RealTalk MS: Recent Episodes
Jon Strum
Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You’ll meet the scientists who are creating tomorrow’s MS treatments today. You’ll hear from the experts discussing how the latest tweaks and changes to our healthcare laws will impact your MS treatment. And we’ll be talking to the courageous MS warriors who are out there advocating on behalf of the MS community every day, as well as the men and women who are committed to living their best lives with MS and living their best lives as MS caregivers. If you're dealing with multiple sclerosis in your life -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS.
If you Google the term "shared decision making", you'll find it defined as a collaborative process where patients and clinicians work together to select tests, treatments, and care plans based on clinical evidence and the patient's personal values and goals.
But shared decision-making isn't an automatic happy pill. It takes work, it takes discipline, and it takes a clear understanding of both the patient's and the clinician's roles. This week, Dr. Aliza Ben-Zacharia and Linda Lachman join me to share how shared decision-making has worked for them over the course of their longtime doctor-patient relationship, and how it can work for you.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into shared decision-making :22
Dr. Aliza Ben-Zacharia and Linda Lachman discuss how they have made shared decision-making work, and what to do if it isn't working for you and your neurologist 2:39
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 467 Guests: Dr. Aliza Ben-Zacharia and Linda Lachman
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We get more listener emails about diet and MS than almost any other topic. If you're curious about how some of the well-known diets for MS actually stack up, or you're interested in understanding the connection between diet and MS-related fatigue, or you want to know what the biggest obstacle to staying on a new diet is (and this may surprise you), then this is the episode for you.
We're devoting this week's entire episode to my conversation with Dr. Tyler Titcomb, an assistant professor in the Department of Dietetics and Nutrition, and a registered dietitian with a PhD in Nutritional Sciences in the Department of Neurology at the University of Kansas Medical Center.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into diet and MS :22
Dr. Tyler Titcomb breaks down what you need to know about how diet influences multiple sclerosis and why it plays such a key role. :54
Share this episode 25:22
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 466 Guest: Dr. Tyler Titcomb
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During his fellowship in the United States, Dr. Avinash Chandra trained to become an MS specialist at a world-class MS center. Then he returned home to Nepal and discovered that MS was largely considered non-existent. But Dr. Chandra knew it wasn't.
In this week's episode, Dr. Chandra discusses his experience creating a framework for MS care in Nepal that hadn't existed before. He also explains the necessary trade-offs in providing costly medical treatment in a country where the average family of four lives on an income of $500 a month.
It's been well-established that males living with MS tend to experience faster and more severe disease progression than females. We're sharing results of a study that shows clear differences in healthcare use by sex up to a decade before the onset of MS.
We'll tell you about a newly published review of 30 years of data measuring the efficacy of autologous hematopoietic stem cell transplantation (aHSCT).
And we're sharing the registration details for ECTRIMS Community Patient Day (it's a free live and online event you won't want to miss!)
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: MS care in a country that considered MS non-existent :22
A study analyzed sex differences in healthcare usage between males and females with MS up to a decade before the first MS symptom develops 1:45
30 years of accumulated data show significant benefits of autologous hematopoietic stem cell transplantation in treating relapsing forms of MS 6:17
It's time to support the National MS Society's $119.6 million active investment in MS research 9:32
Dr. Avniash Chandra discusses MS care in Nepal 12:43
Share this episode 35:40
Next week 36:01
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Just copy this link & paste it into your text or email: https://realtalkms.com/465
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Sex Differences in Healthcare Use Before the First Multiple Sclerosis-Related Demyelinating Event https://www.msard-journal.com/article/S2211-0348(26)00396-2/fulltext
PLAIN ENGLISH SUMMARY: Sex Differences in Healthcare Use Before the First Multiple Sclerosis-Related Demyelinating Event https://tremlettsmsresearchexplained.wordpress.com/2026/07/22/sex-differences-in-healthcare-use-before-the-first-multiple-sclerosis-related-demyelinating-event-explained
LISTEN: Dr. Helen Tremlett Discusses the MS Prodrome https://realtalkms.com/321
STUDY: Autologous Stem Cell Transplantation for Multiple Sclerosis https://pubmed.ncbi.nlm.nih.gov/41482159
REGISTER: ECTRIMS Patient Community Day https://ectrimspatientcommunity.eu
SUPPORT: National MS Society Research https://nationalmssociety.org/research
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 465 Guest: Dr. Avinash Chandra
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If you've spent any time at all living with or caring for someone with multiple sclerosis, you know that medical textbooks and information-filled websites can give us facts, figures, and symptoms, but they rarely capture the sometimes messy, sometimes overwhelming, and sometimes darkly funny reality of what it actually feels like to get a diagnosis of MS and realize your life has suddenly shifted under your feet.
Our guest, Liat Shalom, was diagnosed with MS in 2021, at the age of 30. Instead of letting that diagnosis define her, Liat picked up her pen and created Unravelled—a groundbreaking graphic memoir that refuses to sugar-coat the MS experience.
For about five years, we've known that the Epstein-Barr virus (EBV) triggers MS. We'll explain what biologists just discovered about how EBV triggers MS, and what that could mean for future treatments.
We're sharing evidence from an important study that shows a simple blood test is as accurate as MRI in determining whether someone is experiencing a relapse or a pseudo-relapse.
We're sharing details of a study showing that virtual reality (VR) therapy is effective in treating MS-related brain fog.
And if you're a woman between the ages of 45 and 60 and you're experiencing perimenopause, we'll share an easy way for you to participate in MS research without leaving home.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Unravalled, Liat Shalom's darkly humorous graphic novel about her MS journey :22
Scientists discover how the Epstein-Barr virus triggers MS 1:53
A simple blood test can determine whether someone is experiencing a relapse or a pseudo-relapse 4:08
It's time to support the National MS Society's $119.6 million active investment in MS research 6:58
Virtual reality therapy can improve MS-related brain fog 9:16
An opportunity to participate in MS research for women between 45-60 who are experiencing perimenopause 11:41
Liat Shalom discusses her journey to an MS diagnosis that led her to create Unravalled, a darkly humorous graphic memoir 13:11
Share this episode 30:32
Next week 30:52
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Just copy this link & paste it into your text or email: https://realtalkms.com/464
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
Unravelled: The Story of an MS Warrior by Liat Shalom https://unraveledgraphicnovel.com
STUDY: CD4+ T-Cells Reactive to Epstein-Barr Virus Late Lytic Antigens are Enriched in Individuals with Multiple Sclerosis https://www.science.org/doi/10.1126/scitranslmed.adz6566
STUDY: Utility of Multi-Analyte Protein Assay to Distinguish Multiple Sclerosis Clinical Relapse from Pseudoexacerbation https://link.springer.com/article/10.1007/s40120-026-00984-2
STUDY: Effectiveness of Immersive and Non-Immersive Virtual Reality Interventions on Cognitive Function in People with Multiple Sclerosis: A Systematic Review https://www.mdpi.com/2077-0383/15/12/4534
PARTICIPATE IN RESEARCH: Perimenopause and Multiple Sclerosis https://www.nationalmssociety.org/news-and-magazine/news/ms-study-alert-perimenopause-survey
STUDY: Effectiveness of Immersive and Non-Immersive Virtual Reality Interventions on Cognitive Function in People with Multiple Sclerosis: A Systematic Review https://www.mdpi.com/2077-0383/15/12/4534
SUPPORT: National MS Society Research https://nationalmssociety.org/research
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 464 Guest: Liat Shalom
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Living with depression has been described as "like living under a wet, heavy blanket". It can stop someone from showing up at work, meeting up with friends, and even connecting with their family.
One out of every two people living with MS will experience depression at some point in their MS journey. The METS for MS study is focused on a novel approach to treating major depressive disorder among people with MS -- one that doesn't require another infusion, injection, or pill.
This week, Dr. Robert Motl, principal investigator for the METS for MS study, joins us to explain what the study is about and what his team is learning. And Kelly, who lives with progressive MS, joins us to share how her participation in the study became life-changing.
We'll also tell you about the $500,000 donation to MS research that Fernando Mendoza and his family just made.
We're sharing the details about the CAR-NKT cell therapy for MS that's being developed at UCLA.
You'll learn about the novel nanoparticle therapy for MS that's being developed by a team at Syracuse University's BioInspired Institute.
And we're sharing the surprising results of a study that measured the effectiveness of Rituximab versus Ocrevus.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A study focusing on a novel approach to treating MS-related depression :22
Fernando Mendoza and his family donate $500,000 to MS research 1:18
UCLA research team receives a $7.49 million dollar grant to develop CAR-NKT therapy for MS 2:22
Syracuse University research team receives NIH grant to develop novel nanoparticle therapy for MS 6:22
Study results: Rituximab and Ocrevus were compared head-to-head and the results are surprising 9:43
Dr. Robert Motl explains the Mood and Exercise Training Study for Multiple Sclerosis, and Kelly explains how her participation in the study turned out to be life-changing 14:22
Share this episode 35:43
Next week 36:03
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Rituximab versus Ocrelizumab in Newly Diagnosed Relapsing Multiple Sclerosis https://www.nejm.org/doi/10.1056/NEJMoa2600993
PARTICIPATE: Mood and Exercise Training Study for Multiple Sclerosis (METS for MS) Email: METSforMS@uic.edu Phone Ariel: (312) 355-1790
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 463 Guest: Dr. Robert Motl, Kelly
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The Americans with Disabilities Act ensures that people living with disabilities receive reasonable accommodations at work. That law also applies to students attending most colleges and universities. And the ADA doesn't limit itself to physical disabilities. It's often applied to invisible disabilities, as well.
This week, Britt Neff, the Access Specialist at the University of Washington School of Law, joins me to explain all the ways the accommodation process can work for college students living with MS.
We'll also tell you about PTD802, an oral remyelination therapy that's just been given a green light from the FDA to begin human clinical trials
We're sharing evidence from an important study that should make you feel more confident about getting those MMR (measles, mumps, rubella) and chickenpox vaccines.
You'll learn what researchers at the Cleveland Clinic discovered when they asked the question, "Can someone living with MS over the age of 60 discontinue their disease-modifying therapy?"
And we're sharing the details about an AI application that can predict -- with 90% accuracy -- whether someone with MS is at risk of experiencing cognitive decline over the next few years.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Understanding "reasonable accommodation" at college :22
FDA approves oral remyelination therapy PTD802 for Phase 1 clinical trial 1:07
Study results: MMR (measles, mumps, rubella) and chickenpox vaccines are shown to be safe for people with MS 4:52
Study results: Is it safe for someone living with MS over 60 to discontinue their DMT? 7:34
Study results: AI predicts future cognitive changes among people with MS with 90% accuracy 10:45
Britt Neff explains the many types of accommodation available to college students with MS 15:01
Share this episode 28:24
Next week 28:44
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Just copy this link & paste it into your text or email: https://realtalkms.com/462
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
Pheno Therapeutics https://phenotherapeutics.com
STUDY: Live Attenuated MMR and Varicella Vaccinations and Multiple Sclerosis Activity https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2849165
STUDY: Long-Term Follow-Up of Patients with Multiple Sclerosis Over Age 60: Comparing Clinical and Radiological Outcomes in Disease-Modifying Therapy Continuers and Discontinuers https://journals.sagepub.com/doi/full/10.1177/20552173261448005
STUDY: Explainable Artificial Intelligence to Predict Neurocognitive Disorder Progression in Multiple Sclerosis Using MRI and Clinical Data https://onlinelibrary.wiley.com/doi/10.1111/ene.70568
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 462 Guest: Britt Neff
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A short while ago, we shared very positive results from the Phase 3 clinical trials for fenebrutinib in both relapsing-remitting and primary progressive MS. Those results have been submitted to the FDA for approval.
This week, Dr. Jiwon Oh, the principal investigator in one of the Phase 3 trials for fenebrutinib, walks us through these positive results and explains what makes fenebrutinib a different kind of disease-modifying therapy and who might benefit most from it.
We're also talking about the European approval of Cenrifki (Tolebrutinib) to treat nonrelapsing secondary progressive MS, and we'll share our perspective on why the FDA should have -- and should still -- approve this DMT in the U.S.
We'll tell you about two studies funded by the National MS Society that will focus on identifying links between menopause and MS.
We'll share some sobering news about healthcare affordability in America.
And we'll share some good news from the U.S. House Appropriations Committee, along with an opportunity for you to spend just 5 minutes doing some important advocacy work.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Fenebrutinib has been submitted to the FDA for approval :22
Cenrifki (Tolebrutinib) approved in Europe for Nonrelapsing Secondary Progressive MS 1:09
National MS Society funds two studies to identify links between menopause and MS 4:19
Healthcare has become unaffordable for the majority of Americans 8:23
The U.S. House Appropriations Committee has approved $20 million in funding for the MS Research Program 11:57
Dr. Jiwon Oh explains why Fenebrutinib is a different kind of disease-modifying therapy, and who may benefit from it 15:36
Share this episode 32:22
Next week 32:43
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Just copy this link & paste it into your text or email: https://realtalkms.com/461
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
PHASE 3 CLINICAL TRIAL: Tolebrutinib in Nonrelapsing Secondary Progressive Multiple Sclerosis https://www.nejm.org/doi/abs/10.1056/NEJMoa2415988
VIDEO: Principal Investigator Dr. Robert Fox Discusses the Phase 3 clinical trial for Tolebrutinib in Nonrelapsing Secondary Progressive MS https://www.youtube.com/watch?v=tJQ93qdlXrU
GALLUP POLL: U.S. Adults' Ability to Afford Healthcare at a Five-Year Low https://news.gallup.com/poll/710942/adults-ability-afford-healthcare-five-year-low.aspx
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 461 Guest: Dr. Jiwon Oh
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Next week, Matt Knaggs and Colin Goodman will attempt to set a Guinness World Record for running the 350-mile length of Ireland with MS. This week, you'll meet Matt and Colin and learn why this undertaking is so important to each of them.
We're also sharing survey results that point to gaps in how we approach MS care from the day of diagnosis.
We'll tell you what it really means when you read that the prevalence of MS is increasing. It isn't bad news at all!
We'll provide you with all the details you need to register for ECTRIMS Patient Community Day.
And, if you can spare 20 minutes, we'll tell you how you can participate in an MS research study from the comfort of your own home.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're hitting the open road in Ireland with Matt Knaggs and Colin Goodman :22
Survey points to gaps in how we approach MS care from day one 2:48
What does the increase in MS prevalence really mean? 8:48
Register for ECTRIMS 2026 Patient Community Day 12:33
An opportunity for you to participate in MS research without leaving home 14:10
Matt Knaggs and Colin Goodman talk about their attempt to set a Guinness World Record for running the length of Ireland with MS 15:56
Share this episode 32:13
Next week 32:33
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Just copy this link & paste it into your text or email: https://realtalkms.com/460
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Understanding the Unmet Needs of People with MS at Diagnosis and Throughout Their Care Journey: Insights from a Survey-Based Study https://link.springer.com/article/10.1007/s40120-026-00942-y
STUDY: Drivers of Prevalence in Major Motor Neurodegenerative Diseases: Temporal Trends in Sweden and France (2003-2022) https://www.neurology.org/doi/10.1212/WNL.0000000000218072
REGISTER: ECTRIMS 2026 Patient Community Day https://www.ectrimspatientcommunity.eu
PARTICPATE IN RESEARCH: Survey: Automatic and Reflective Determinants, Fatigue, and Physical Activity for People with Multiple Sclerosis https://purdue.ca1.qualtrics.com/jfe/form/SV_douenJftXAcGxVk
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 460 Guest: Matt Knaggs, Colin Goodman
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For years, the standard medical advice for someone diagnosed with multiple sclerosis was simple, cautious, and as we now know, incredibly limiting: "Take it easy. Don't overexert yourself. And get plenty of rest."
Today, like almost every other aspect of MS care, neurological rehabilitation is being entirely rewritten. It's no longer about just managing decline; it's about leveraging emerging technologies to proactively build resilience, retrain the brain, and adopt cutting-edge exercise science to fundamentally change the trajectory of life with MS.
This week, three experts share their thoughts on what MS rehabilitation looks like in 2026...and it's not your father's MS rehab!
Dr. Brian Sandroff breaks down his groundbreaking research on how tailored exercise regimens—like treadmill walking—can actually improve memory, boost processing speed, and spark cognitive recovery.
Dr. Brad Willingham discusses the game-changing world of continuous remote monitoring, explaining how wearable sensors and AI are turning real-world, 24/7 data into hyper-personalized, dynamic treatment plans.
And Dr. Laura Rice delivers a practical exercise blueprint for individuals with MS who use wheelchairs. You'll learn how to jumpstart a safe fitness routine while effectively managing risks like heat sensitivity, shoulder overuse, skin breakdown, and the fear of falling.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into MS rehabilitation :22
Dr. Brian Sandroff answers the question, "Can exercise be used to treat cognitive impairment?" 2:10
Dr. Brad Willingham explains how AI can play a meaningful role in MS rehabilitation and clinical care 13:41
Dr. Laura Rice shares tips and strategies for exercising safely if you rely on a wheelchair for mobility 26:18
Share this episode 46:27
Next week 46:47
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Just copy this link & paste it into your text or email: https://realtalkms.com/459
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 459 Guest: Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice
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This week, our coverage of the Consortium of MS Centers annual meeting continues with my guest, Dr. Stephen Krieger. In a wide-ranging conversation, Dr. Krieger offers a very encouraging clinical trial update, shares his thoughts on what treating someone living with advanced MS ought to look like, and points out potential obstacles to implementing the updated criteria for diagnosing MS.
Dr. Krieger is a Professor of Neurology at the Icahn School of Medicine at Mount Sinai in New York, and a Multiple Sclerosis Specialist at the Corinne Coldsmith Dickinson Center for MS.
We're also sharing results of a study that revealed some surprising connections between caffeine, alcohol, opioids, and MS symptoms.
And if you're living with MS and you're the parent of a young child, we'll tell you about a book that belongs on your bookshelf.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're at the CMSC annual meeting with Dr. Stephen Krieger :22
Study reveals the connection between caffeine, alcohol, and opioids and your MS symptoms 1:12
My Superhero with Wheels is the book you need if you're living with MS and have young children 5:15
Dr. Stephen Krieger discusses exciting clinical trial results, treating people with advanced MS, and potential challenges in implementing the updated criteria for diagnosing MS 8:39
Share this episode 30:22
Next week 30:41
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/458
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Daily Temporal Associations Between Psychoactive Substances and Fatigue, Pain, Stress, and Depressive Symptoms in People with Multiple Sclerosis https://archives-pmr.org/article/S0003-9993(26)00035-3/fulltext
BOOK: My Superhero with Wheels https://amazon.com/My-Superhero-wheels-True-Story/dp/B0GWVGSWX5/ref=sr_1_1
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on X, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 458 Guest: Dr. Stephen Krieger
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Last week, the Consortium of Multiple Sclerosis Centers, best known as CMSC, hosted its annual meeting in Charlotte, North Carolina, where we had a chance to talk with some of the world's top MS experts. We'll be sharing those conversations over the next few episodes of the podcast. Welcome to Part One of our coverage of CMSC 2026!
In what has become an annual tradition at this conference, Dr. Kathy Zackowski, the National MS Society's Associate Vice-President of Research, joins me to share her impressions of the sessions and presentations that stood out to her.
I also caught up with Dr. Valerie Block and Dr. Riley Bove on the first day of the CMSC annual meeting, and we discussed how wearable devices and digital tools are finding their way into MS care and how they can improve the quality of care for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're reporting from CMSC :22
Dr. Kathy Zackowski shares the CMSC presentations that caught her eye 1:04
Dr. Valerie Block and Dr. Riley Bove discuss how wearable devices and digital tools are reshaping MS care 14:29
Share this episode 28:20
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RealTalk MS Episode 457 Guests: Dr. Kathy Zackowski, Dr. Valerie Block, Dr. Riley Bove
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May 30th is World MS Day! This year, the theme for World MS Day is "My MS Diagnosis," and I've been thinking about what happens right after that diagnosis. Afteran individual hears, "You have MS."
This week, Dr. Nancy Sicotte joins me to discuss the things you should know, the things you should be thinking about, and the things you should be doing in the first 100 days following an MS diagnosis.
Dr. Sicotte is the Chair of Neurology and Director of Multiple Sclerosis and Neuroimmunology at Cedars-Sinai in Los Angeles, and she's the past Chair of the National MS Society's National Medical Advisory Committee.
We're also sharing results of a study that showed an exercise hormone protected neurons from inflammatory attack in a mouse model of MS.
And we're sharing encouraging news about an experimental nasal spray that's been shown to delay disability progression and improve fatigue among people with non-active secondary progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: World MS Day! :22
Study reveals an exercise hormone has neuroprotective effects on a mouse model of MS 2:40
Tiziana shares evidence that Foralumab delays progression and improves fatigue in people with non-active secondary progressive MS 4:34
Dr. Nancy Sicotte looks at the first 100 days following an MS diagnosis 8:40
Share this episode 28:51
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LINKS
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World MS Day Poster Maker https://worldmsday.org/poster-maker
STUDY: The Exercise Hormone Irisin Has Neuroprotective Effects in a Mouse Model of Multiple Sclerosis https://www.nature.com/articles/s42255-026-01527-7
CLINICAL TRIAL: A Study of Nasal Foralumab in Non-Active Secondary Progressive Multiple Sclerosis Patients https://clinicaltrials.gov/study/NCT06292923
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RealTalk MS Episode 456 Guest: Dr. Nancy Sicotte
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When we talk about managing Multiple Sclerosis, our conversations naturally focus on things like disease-modifying therapies, mobility, MRI scans, and symptom management. But in this week's episode, we're shining a light on a critical aspect of MS wellness that doesn't get nearly enough attention: your oral health.
Living with MS can introduce a whole host of unexpected challenges to maintaining a healthy mouth. And beyond preventing tooth decay and gum disease, emerging research suggests that chronic oral inflammation, like periodontal disease, can trigger systemic inflammation throughout the body.
Dr. Ann Spolarich joins us to break down the science, explain the risks, and offer practical suggestions for maintaining oral health for people living with MS and their care partners.
We're also sharing study results that revealed 1,000 differences between immune cells in men and women. (And we're explaining why that's important)
If you're a parent or caregiver for a child or teen with MS, we'll tell you everything you need to know about the FDA approval of Ocrevus for treating pediatric MS.
We're sharing the details of an AI partnership designed to shorten the time to an MS diagnosis and track progression in real time.
We're sharing the details of another AI partnership designed to test a pill that will ease MS-related depression and fatigue.
And we'll tell you about a way that you can participate in MS research from the comfort and convenience of your own home.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The connection between your oral health and MS :22
Study reveals 1,000 differences between men's and women's immune cells 1:30
FDA approves Ocrevus for children over the age of 10 with relapsing remitting MS 3:28
An AI partnership designed to shorten the time to an MS diagnosis and track progression in real time 5:43
An AI partnership to test a pill that will ease MS-related depression and fatigue 9:24
An opportunity to participate in MS research from the comfort and convenience of your own home 13:16
Dr. Ann Spolarich discusses the connection between your oral health and MS 13:16
Share this episode 29:45
Next week 30:05
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LINKS
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STUDY: The Impact of Sex on the Immune System Explored at the Single-Cell Level https://www.cell.com/ajhg/fulltext/S0002-9297(26)00153-9
ONLINE SURVEY: Bladder-Related Fall Risk in People with MS https://www.nationalmssociety.org/how-you-can-help/get-involved/participate-in-research-studies/rs-bladder-fall-risk
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RealTalk MS Episode 455 Guest: Dr. Ann Spolarich
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One out of every two people with MS will experience clinical depression at some point in their MS journey, making depression one of the most significant yet under-discussed aspects of living with MS. While the physical symptoms of MS often take center stage, the neuropsychiatric challenges can be just as impactful on an individual's overall quality of life and long-term outcomes.
Joining us to shed some light on this important topic is Dr. Anthony Feinstein, a world-renowned neuropsychiatrist and professor at the University of Toronto. Dr. Feinstein has spent decades researching the biological and psychological drivers of depression in MS.
We're also sharing study results revealing that wait times to see a neurologist in the U.S. are way too long.
We'll tell you about a pilot trial that's recruiting participants for an implantable device designed to promote remyelination.
We're just two days away from the National MS Society's webcast on protecting federal funding for MS research, the NIH, CDC, and FDA. We're sharing all the details and info to register.
And we'll tell you all about the MS Society's statement for the record at a congressional hearing, exposing how Pharmacy Benefit Managers often prioritize profits over patient welfare.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing MS-Related Depression :22
Study results reveal wait times for an appointment with a neurologist in the U.S. 1:45
A pilot clinical trial for an implantable device designed to promote remyelination 4:38
A webcast to update you on the National MS Society's advocacy efforts to protect federal funding for MS research, the NIH, CDC, and FDA 7:05
The National MS Society has submitted a critical statement for the record at a congressional hearing, exposing how Pharmacy Benefit Managers often prioritize profits over patient welfare 8:39
Dr. Anthony Feinstein discusses the latest research and strategies for managing MS-related depression 11:00
Share this episode 29:37
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Access to High-Efficacy Therapies for Multiple Sclerosis Under Medicaid: Variation in Coverage and Utilization Across States https://aan.com/msa/Public/Events/AbstractDetails/61520
STUDY RESULTS: Neurology Wait Times After Primary Care or Emergency Department Visits Among the Commercially Insured Population in the United States: 2019-2023 https://www.neurology.org/doi/10.1212/WNL.0000000000218008
CLINICAL TRIAL: The SetPoint System as a Pro-Remyelination Therapy for Relapsing-Remitting Multiple Sclerosis: A Pilot Study https://clinicaltrials.gov/study/NCT06796504
WEBCAST: Make It Count Now: Mobilizing for Federal Funding in a Changing Policy Landscape https://nmss.quorum.us/event/33151
READ: The National MS Society Statement for The Record: "Profits Over Patients: The PBM Business Model Under Scrutiny" https://cdn.sanity.io/files/y936aps5/production/0372d3964cc269a404c17dff8ca919b34d0c6603.pdf
AbleNOW https://ablenow.com
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RealTalk MS Episode 454 Guest: Dr. Anthony Feinstein
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For decades, an MS diagnosis came with outdated advice and significant uncertainty regarding starting a family. Today, the conversation has shifted from "Is it possible?" to "How do we optimize the journey?" This week, we're taking a deep dive into the essential considerations for family planning, managing MS during pregnancy, and the crucial postpartum period.
We're joined by Dr. Riley Bove, an Associate Professor of Neurology at UCSF and a leading expert in hormonal influences on MS. Dr. Bove brings her extensive research background and clinical expertise to help us understand how to navigate disease-modifying therapies while planning a family, the biological shifts that occur during pregnancy, and how to build a robust support system for the "fourth trimester."
We're also sharing study results that provide some optimistic news for people experiencing MS-related depression.
We'll tell you about a study that explains the actual changes in the immune system that occur when someone with MS exercises.
If you get your health insurance on the Affordable Care Act online marketplace, we'll explain why health economists feel certain that your premiums will be going up again next year.
And we're also sharing some sobering research that highlights systemic inequities that prevent people with MS who rely on Medicaid from accessing high-efficacy disease-modifying therapies.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: MS and family planning, pregnancy, and postpartum :22
STUDY: High-efficacy disease-modifying therapies are not available to all Medicaid recipients 1:08
Millions have failed to renew their ACA individual health insurance plans 5:05
STUDY: Cognitive-behavioral therapy improves MS-related depression 9:32
STUDY: Researchers identify the biological mechanisms that are impacted when people with MS exercise 11:29
Dr. Riley Bove discusses family planning, pregnancy, and postpartum issues that affect women with MS 14:48
Share this episode 35:31
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Access to High-Efficacy Therapies for Multiple Sclerosis Under Medicaid: Variation in Coverage and Utilization Across States https://aan.com/msa/Public/Events/AbstractDetails/61520
STUDY: Effectiveness of Cognitive Behavioral Therapy for Depression in Patients with Multiple Sclerosis: A Systematic Review and Meta-Analysis https://journals.lww.com/md-journal/fulltext/2026/04170/effectivess_of_cognitive_behavioral_therapy_for.27.aspx
STUDY: Physical Exercise Modulates T Cell Activity and Mitigates Synaptic Dysfunction in Multiple Sclerosis Through Vagus Nerve Engagement https://sciencedirect.com/science/article/abs/pii/S0889159126002710
UCSF Clinical Trials: Pregnancy Registry, Infants, Serum/Milk Analysis (PRISMA) https://clinicaltrials.ucsf.edu/trial/NCT06940323
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RealTalk MS Episode 453 Guest: Dr. Riley Bove
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Myelin repair is a natural function. But, for people living with MS, that ability to repair myelin eventually stops working. New research led by my guest, Dr. Larry Sherman, may explain why that happens and point to new possibilities for future myelin repair treatments.
Dr. Sherman is a professor at the Oregon National Primate Research Center at Oregon Health & Science University, and his research focuses on how the brain and spinal cord respond to injury and disease, particularly in demyelinating conditions such as multiple sclerosis.
We're also sharing some potentially good news for people living with non-relapsing secondary progressive MS in Europe, but not in the United States.
We'll give you the details about an experimental drug that's just been submitted to the FDA and EMA for approval for treating relapsing forms of MS and primary progressive MS.
We'll share the results of a study that focused on the impact of a cancer diagnosis on MS care.
We'll tell you how Fernando Mendoza celebrated being named the #1 pick in this year's NFL draft.
And we're sharing news about a new AI tool for your doctor.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Why myelin repair stops working for people living with MS :22
EMA's Committee for Medicinal Products for Human Use recommends approval of Tolebrutinib 1:35
Roche submits Fenebrutinib for FDA and EMA approval 4:45
Study results show the effect of a cancer diagnosis on MS care 6:13
The first pick in the 2026 NFL draft, Fernando Mendoza, partners with the National MS Society to launch the Mendoza Family Fund 9:43
OpenAI launches ChatGPT for Clinicians 10:56
Dr. Larry Sherman discusses why myelin repair stops working for people with MS, and how his team may have found a way to restart it 14:37
Share this episode 27:59
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
LISTEN: RealTalk MS Episode 440: An MS Specialist Responds to the FDA with Dr. William Conte https://realtalkms.com/440
STUDY: Impact of Cancer on Multiple Sclerosis-Related Healthcare and Disease-Modifying Drug Use: A Multinational Cohort Study https://journals.sagepub.com/doi/10.1177/13524585261437966
STUDY (Plain English Version): Impact of Cancer on Multiple Sclerosis-Related Healthcare and Disease-Modifying Drug Use: A Multinational Cohort Study https://tremlettsmsresearchexplained.wordpress.com/2026/04/23/impact-of-cancer-on-multiple-sclerosis-related-healthcare-and-disease-modifying-drug-use-a-multinational-cohort-study-explained
DONATE: The Mendoza Family Fund (in Partnership with the National MS Society) https://nationalmssociety.org/how-you-can-help/ways-to-give/mendoza
LEARN MORE: ChatGPT For Clinicians https://chatgpt.com/plans/clinicians
AbleNOW https://ablenow.com
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 452 Guest: Dr. Larry Sherman
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The annual meeting of the American Academy of Neurology is underway in Chicago this week, and one of the highlights is the presentation of the John Dystel Prize for Research in Multiple Sclerosis, awarded jointly by the National MS Society and the American Academy of Neurology.
This year's winner of the Dystel Prize is Dr. Ludwig Kappos, a physician-scientist at the University Hospital Basel in Basel, Switzerland, and the director of the Research Center for Clinical Neuroimmunology and Neuroscience Basel.
Dr. Kappos has played a major role in how clinical trials in MS are conducted. He helped establish the Expanded Disability Status Scale, or EDSS, which is the gold standard for measuring disability in people with MS, and Dr. Kappos and his team have advanced our current understanding of a key driver of disability in MS, known as progression independent of relapse activity, or PIRA.
Dr. Kappos will be delivering the Dystel Prize lecture at the American Academy of Neurology meeting this week, and he's joining us to share a preview of that lecture in a conversation you won't want to miss.
We're also sharing news about a blood test used to monitor MS disease activity that has just been approved by the European Union.
We'll give you the details of a study focused on whether disease-modifying therapies can impact neurodevelopmental birth defects in children born to mothers with MS.
We'll explain why yaks and Tibetan antelope may have opened a door to neuroprotection and myelin repair for people living with MS.
And we'll tell you where healthcare providers and patients may differ when it comes to defining high-quality MS care.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The John Dystel Prize for Multiple Sclerosis Research is awarded :22
A blood test to monitor MS disease activity is approved by the EU 2:28
Researchers determine whether disease-modifying therapies have an impact on neurodevelopmental birth defects among children born to mothers with MS 4:21
Researchers studying yaks and Tibetan antelope may have uncovered a pathway to neuroprotection and even myelin repair 7:24
Healthcare providers and people living with MS share their perspectives on what needs improvement in delivering high-quality MS care 10:01
Dr. Ludwig Kappos reflects on how MS clinical trials need to change 13:33
Share this episode 30:58
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Association of Neurodevelopmental Disorders and Congenital Anomalies with Prenatal Multiple Sclerosis Treatment: Real World Historial Cohort Studyhttps://ascpt.onlinelibrary.wiley.com/doi/10.1002/cpt.70235
STUDY: A Gain-of-Function Retstat Variant from High-Altitude Adaptation Promotes Myelination Via a Neuronal Dihydroretinoic Acid-RXR-Y Pathway https://www.cell.com/neuron/fulltext/S0896-6273(26)00013-9
ARTICLE: Areas for Improvement for High-Quality Multiple Sclerosis Care: Insights from Interviews with People with Multiple Sclerosis, Providers, and Clinical Educators https://sciencedirect.com/science/article/abs/pii/S1936657426000300
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RealTalk MS Episode 451 Guest: Dr. Ludwig Kappos
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An exercise program can be hard to start and even more difficult to stick with. But the evidence-based benefits speak for themselves. For people living with MS, it can mean improving quality of life without having to rely on a pill, injection, or infusion. And exercise is 100% affordable!
Dr. Robert Motl, the Director of the Exercise Neuroscience Research Laboratory at the College of Applied Health Sciences at the University of Illinois Chicago, joins me to discuss how exercise can improve MS-related brain fog, reduce fatigue, and perhaps even support myelin repair.
We'll also share the results of a study that shows having mononucleosis is a significant risk factor for developing MS.
And we'll tell you about a powerful imaging agent that can identify which immune cells are causing the inflammatory activity that drives MS, determine disease severity, and track the immune system's response to disease-modifying therapy. It's a potential game-changer in MS care.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Evidence-based benefits of exercise for people living with MS :22
Study results show that having mono increases the chance that someone will develop MS 1:28
Researchers have created an imaging agent with the potential to be a game-changer in diagnosing and treating MS 4:29
Dr. Robert Motl explains how and why exercise can be medicine for people with MS 10:04
Share this episode 31:50
Next week 32:10
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
STUDY: Risk of Multiple Sclerosis Among Persons with Epstein-Barr Virus-Positive Mononucleosishttps://www.neurology.org/doi/10.1212/WN9.0000000000000082
STUDY: A Radiolabeled Dendrimer Non-Invasively Identifies and Tracks Innate Immune Cell Activation in a Mouse Model of Experimental Autoimmune Encephalomyelitis https://www.nature.com/articles/s41467-025-67907-x
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RealTalk MS Episode 450 Guest: Dr. Robert Motl
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When you join the iConquer MS community, you're no longer just a patient; you become a research partner. Not just a data point in someone's study. You become the person to suggest the study, to help define the study, and to participate in sharing the outcome of the study.
In this week's episode, I talk with the iConquer MS leadership team about what it means to be part of this people-powered research revolution and how iConquer MS keeps people affected by MS at the center of MS research.
The National Institutes of Health has just published a Strategic Plan for Disability Health Research. We're sharing all the details.
And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.
And a research team analyzed data from 20 global studies to determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) were cost-effective. We're sharing their somewhat surprising results.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're talking about people-powered MS research :22
The NIH has published a Strategic Plan for Disability Health Research 1:15
Researchers determine whether anti-CD20 disease-modifying therapies (Ocrevus, Kesimpta, Briumvi) are cost-effective 6:05
Sara Loud, Stephanie Buxhoeveden, and Hollie Schmidt discuss what it means to put people affected by MS at the center of MS research 12:41
Share this episode 36:26
Next week 36:45
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes at www.RealTalkMS.com
iConquer MS https://iconquerms.org
National Institutes of Health Strategic Plan for Disability Health Research https://dpcpsi.nih.gov/disabilityhealthresearch
STUDY: Economic Value of Anti-CD20 Therapies in Multiple Sclerosis: A Systematic Review of Cost-Effectiveness Studieshttps://journals.sagepub.com/doi/10.1177/17562864261426816
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RealTalk MS Episode 449 Guests: Sara Loud, Stephanie Buxoeveden, and Hollie Schmidt
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Last week, about 170 MS activists from across the country gathered in Washington, D.C. to participate in the National MS Society's Public Policy Conference. It's hard to come away from this event and not feel outraged by the stories that are shared, but also inspired by the resilience and bravery of the MS Activists who are willing to share some of the worst moments in their MS journey to make sure that our elected representatives in the House and Senate understand why the legislation we ask them to support is so vitally important. I met so many truly amazing MS activists at this year's Public Policy Conference, and you'll meet some of them in this week's episode. We're also sharing survey results that paint a disturbing picture of the human consequences that resulted from losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees The National MS Society has invested $2.3 million in 11 research projects focused on women's health issues and MS. We're sharing details of each new research initiative being funded.
You'll learn about a clinical trial for a novel investigational therapy for MS and other autoimmune diseases.
And we'll tell you about a study that you can participate in from home...and get compensated for your participation!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're at the Public Policy Conference :22
Survey results show the human consequences of losing Congressional funding to support enhanced premium tax credits for ACA Marketplace Enrollees 4:45
The National MS Society invests $2.3 million dollars in research projects focused on women's health issues and MS 7:23
The first healthy participant is dosed in the clinical trial for ICP-538 11:24
An opportunity to participate from home in a clinical trial (and there's compensation!) 12:41
MS Activists David, Cliff, and Michelle share their thoughts on attending the MS Society's Public Policy Conference 15:27
Share this episode 30:10
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
JOIN: Become an MS Activist https://nationalmssociety.org/advocacy
LISTEN: RealTalk MS Episode 446 -- MS Advocacy and the National MS Society's Public Policy Conference with Steffany Stern https://realtalkms.com/446
SURVEY RESULTS: Cost Concerns and Coverage Changes: A Follow-Up Survey of ACA Marketplace Enrollees https://www.kff.org/public-opinion/a-follow-up-survey-of-aca-marketplace-enrollees
PARTICIPATE: A Study to Determine How Well Different Fall Prevention Programs Work for People with Spinal Court Injury and Multiple Sclerosis Email for More Information: DpQol-FallPrev@illionois.edu
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 448 Guests: David Silbaugh, Cliff Currie, and Michelle Constantine Hibbs
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In 1988, there were just 42 Walk MS events, raising approximately $4 million. In 2025, there were 170 events across the country that raised over $30 million. As the largest private funder of MS research in the world, the National MS Society relies on funds raised at events like Walk MS to continue supporting the work that brings us closer to cures. This week, Brigitte Delaney, an amazing fundraiser and captain of the Many Sisters Walk MS team, shares her story, talks about the origin of the Many Sisters team, and offers her recipe for successful fundraising.
We're also sharing study results that show adhering to the MIND diet slows brain aging (and we'll explain why that matters to someone living with MS)
We'll tell you about NG01, a remyelinating cell therapy that just received an FDA designation that will accelerate its development.
You'll learn about CoPilot Health, Microsoft's new AI health chatbot.
And we're sharing study results that indicate people who receive their MS diagnosis over the age of 50 tend to experience a more severe MS disease course.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's WALK MS! :22
Study results show that adherence to the MIND diet slows brain aging 1:24
The FDA grants a designation that accelerates development of a remyelinating cell therapy 4:42
Microsoft launches CoPilot Health, an AI health chatbot 7:17
Study results indicate that people who are diagnosed over the age of 50 often experience a more severe MS disease course 9:32
Brigitte Delaney introduces us to the Many Sisters WALK MS team 12:07
Share this episode 22:28
Next week 22:48
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Just copy this link & paste it into your text or email: https://realtalkms.com/447
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
JOIN: Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Adherence to the MIND Diet and Longitudinal Brain Structural Changes Over a Decade: Evidence from the Framingham Heart Study Offspring Cohort https://jnnp.bmj.com/content/early/2026/3/11/jnnp-2025-336957
STUDY: Effect of Late-Onset on Multiple Sclerosis Phenotype and Outcome: Evidence from a Multi-National Registry https:/link.springer.com/article/10.1007/s00415-026-13632-4
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 447 Guests: Brigitte Delaney
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175 MS activists are heading to Washington, D.C. next week for the National MS Society's Public Policy Conference. Their mission: to bring the concerns of the MS community directly to lawmakers on Capitol Hill. When it comes to the legislative support for healthcare and medical research, it's no secret that these are unusual times. Joining me to brief us on the National MS Society's ongoing advocacy efforts and give us a sneak peek at the specific legislative issues we'll be taking to Capitol Hill is the National MS Society's Vice President of Advocacy, Steffany Stern.
We'll also share updated results from an important study that show the risk of developing MS if a close relative is living with the disease is significantly higher than researchers originally thought.
And we'll give you all the details of a Phase 1 clinical trial that's focused on a novel approach to CAR-T cell therapy for MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Preparing for the MS Society's Public Policy Conference :22
I'm asking for your support: 1:37
An update to a 2015 study shows close relatives of people living with MS are 100 times more likely than the general population to develop MS 2:15
A novel approach to CAR-T cell therapy for MS is recruiting for a Phase 1 clinical trial 4:26
Steffany Stern, the Vice President of Research at the National MS Society, shares a major advocacy win and previews next week's Public Policy Conference in Washington, D.C. 7:27
Share this episode 33:04
Next week 33:25
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
JOIN: Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: A Prospective Study of Individuals at Risk of Multiple Sclerosis Informs the Design of Primary Prevention Studies https://onlinelibrary.wiley.com/doi/10.1002/acn3.70340
GEMS Study Recruitment https:/nationalmssociety.org/news-and-magazine/news/ms-study-alert-gems
RealTalk MS Ep. 439: Preventing MS with Dr. Bruce Bebo https://realtalkms.com/439
PARTICIPATE: A Study to Assess the Safety and Clinical of Azer-cel in Participants with B-cell Mediated Autoimmune Disorders https://clinicaltrials.gov/study/NCT06680037/#contacts-and-locations
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 446 Guests: Steffany Stern
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It's MS Awareness Week, and this year we're diving into a theme that hits home for millions: Unseen MS. Multiple sclerosis is a master of disguise; it can be entirely invisible to the naked eye while remaining profoundly life-altering for the person living it. In this episode, we're exploring the spectrum of the MS experience through two distinct, yet deeply connected stories.
First, you'll hear from RealTalk MS team member Kristine Werner Ozug. Kristine shares what it's like to navigate a world that doesn't always see her struggle, and how her "mostly invisible" MS symptoms still dictate the rhythm of her daily life.
Then, you'll meet the two Kims (and a third). Kim W and Kim P, have been together for 16 years. They both live with MS—but in very different ways. While Kim P has navigated RRMS for 18 years with largely invisible symptoms, Kim W was diagnosed with PPMS just three years ago and faces much more visible physical challenges.
Joining our conversation with Kim and Kim is Kim Fredsall, a physical therapist at Gaylord Specialty Healthcare, who provides expert context on bridging the gap between diagnosis and daily management.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's MS Awareness Week :22
Kristine Werner Ozug shares her story 1:24
Kim W. and Kim P. share their story 24:49
Share this episode 39:14
Next week 39:34
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 445 Guests: Kristine Werner Ozug, Kim P, Kim W, and Kim Fredsall
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You know them by their trade names such as Ozempic, Wegovy, Mounjaro, and Zepbound. This class of medications is known as GLP-1 receptor agonists. And while they are best known for managing diabetes and promoting weight loss, researchers are finding that these drugs are also effective in a broad range of other health conditions. So, what about MS? My guest this week is Dr. Ellen Mowry, the principal investigator of a clinical trial to determine whether a GLP-1 drug can reduce brain inflammation and provide neuroprotection in people living with progressive MS.
We're sharing details about the discovery of a new biomarker that not only confirms an MS diagnosis but also predicts the severity of an individual's disease course in the years ahead.
We'll tell you about three studies focused on better managing some of the most common MS symptoms and funded by the International Progressive MS Alliance.
And we'll explain how Merck and the Mayo Clinic are partnering to build a first-of-its-kind drug discovery platform using AI.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A GLP-1 for MS? :22
I'm asking for your support: 1:31
Researchers discover biomarkers that can predict future disease course 2:13
The International Progressive MS Alliance invests $8.1 million in global studies that address the most common MS symptoms 5:44
Merck and the Mayo Clinic collaborate on AI-driven drug discovery platform 10:02
Dr. Ellen Mowry discusses the clinical trial to determine whether a GLP-1 drug can reduce inflammation in the central nervous system and offer neuroprotection to people with progressive MS 12:20
Share this episode 30:17
Next week 30:38
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
STUDY: Large-Scale Proteomics Across Neurological Disorders Uncovers Biomarker Panel and Targets in Multiple Sclerosis https://pubmed.ncbi.nlm.nih.gov/41747728
International Progressive MS Alliance https://progressivemsalliance.org
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 444 Guests: Dr. Ellen Mowry
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Welcome back to the third and final part of our coverage of the 2026 ACTRIMS Forum. This week's episode bridges the gap between groundbreaking clinical research and the nuanced reality of living with MS every day.
First, we'll dive into the "before" and "after" of a diagnosis, starting with Dr. Helen Tremlett's insights into the MS prodrome—those subtle, early signs that appear years before typical MS symptoms. We'll also talk with Dr. Tremlett about how other health conditions can predict long-term outcomes in sometimes surprising ways.
Dr. Ilana Katz Sand shares her latest research on the connection between diet, MRI findings, and clinical disability. Dr. Katz Sand also shares her list of foods you want to include and those you need to exclude when you choose the MIND diet. And Dr. Katz Sand explains the complementary roles of lifestyle choices and disease-modifying therapies in creating the most effective MS treatment plan.
Finally, we ground these scientific advancements in the lived experience as Kathy Smith joins us to challenge the clinical labels we use to describe MS, questioning whether terms like "relapsing-remitting" or "secondary-progressive" truly capture the day-to-day reality of her two-decade journey with the disease.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The 2026 ACTRIMS Forum (Part 3) :22
Dr. Helen Tremlett discusses the prodromal phase of MS, which comorbidities are predictive of better or worse patient outcomes, and the role of the environment in pediatric MS 1:19
Dr. Ilana Katz Sand shares her latest research on the impact of diet on MS 10:44
As someone who has lived with MS for two decades, Kathy Smith takes on the question of whether the current labels like 'relapsing-remitting' or 'secondary-progressive' actually describe what life is like on a day-to-day basis for someone living with MS 22:35
Share this episode 34:29
Next week's episode 34:49
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
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JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 443 Guests: Dr. Helen Tremlett, Dr. Ilana Katz Sand, and Kathy Smith
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Welcome back to Part Two of our coverage of the 2026 ACTRIMS Forum. This week, we shift our focus to emerging therapies and clinical insights that are re-shaping the future of MS care. From the latest information on stem cell transplantation to evolving treatment strategies to the labels used to describe MS, we're breaking down the complex science into the conversations that matter most to the MS community.
Joining me to discuss one of the most significant presentations from the 2026 ACTRIMS Forum is Dr. Jeffrey Cohen, who opened the event with the Kenneth P. Johnson Memorial Lecture.
Dr. Cohen's lecture, "AHSCT: Current Status and Remaining Questions," tackled a topic of massive interest to both clinicians and the MS community: Autologous Hematopoietic Stem Cell Transplantation (AHSCT). Often described as "resetting" the immune system, AHSCT is a complex and life-changing procedure that continues to evolve.
In our conversation, Dr. Cohen delves deeper into his lecture, discussing transplant efficacy, the best candidates for AHSCT, the optimal time to consider AHSCT, and how people living with MS may qualify to participate in a clinical trial comparing the benefits of AHSCT with those of high-efficacy disease-modifying therapies.
Joining me for a deep dive into the future of MS care is Dr. Daniel Ontaneda. Our wide-ranging conversation explores the cutting edge of clinical practice and research, including the "early vs aggressive" treatment debate, how incorporating new imaging biomarkers will lead to faster, more reliable, and more accurate MS diagnoses, and whether the current disease classifications still serve the best interests of patient care.
While MS research conferences like the ACTRIMS Forum are never short on world-class expert opinions and groundbreaking data, one perspective is often missing from the room: the voice of someone living with the disease.
That's why I was so glad to have Kristine Werner Ozug, a valued member of the RealTalk MS team, on the ground with me. As someone living with MS, Kristine brings a vital lens to these scientific sessions. After the final gavel fell, I sat down with her to get her "patient-first" perspective on the research that mattered most to her and what she's taking away from this year's Forum.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The 2026 ACTRIMS Forum (Part 2) :22
Dr. Jeffrey Cohen takes us on a deep-dive into Autologous Hematopoietic Stem Cell Transplantation (AHSCT) 1:23
Dr. Daniel Ontaneda discusses the ways that today's MS research will impact tomorrow's MS care 10:44
Kristine Werner Ozug shares her "patient-first" perspective on the research that mattered most to her and what she's taking away from the 2026 ACTRIMS Forum 28:17
Share this episode 43:31
Next week's episode 43:54
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 442 Guests: Dr. Jeffrey Cohen, Dr. Daniel Ontaneda, and Kristine Werner Ozug
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Last week, over 1,400 scientists and clinicians gathered in San Diego, California, at the 2026 Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum. This week, in Part One of our coverage, you'll hear from three of the experts who presented their research at the ACTRIMS Forum.
Dr. Manuel Friese, a clinician-scientist at the Institute of Neuroimmunology and Multiple Sclerosis at the University Medical Center Hamburg-Eppendorf in Hamburg, Germany, where he serves as the Director of the Center for Molecular Neurobiology, and the Director of the Institute of Neuroimmunology and Multiple Sclerosis, is this year's winner of the Barancik Prize for Innovation in Multiple Sclerosis. I had an opportunity to talk with Dr. Friese about some of his truly remarkable research.
Dr. Amit Bar-Or, the Director of the Centre for Neuroinflammation and Experimental Therapeutics (CNET) and Chief of the Division of Multiple Sclerosis (MS) and related disorders at the University of Pennsylvania, presented encouraging results from two important clinical trials. Dr. Bar-Or and I discussed what those results might mean for people living with relapsing-remitting and primary progressive MS.
Dr. Haritha Desu, a young investigator at the ACTRIMS Forum, presented her cutting-edge research on how immune cells interact with cells already resident in the brain to drive damage or potentially promote repair. I talked with Dr. Desu about how her work could be key to stopping MS progression independent of relapse activity.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The 2026 ACTRIMS Forum :22
Barancik Prize winner Dr. Manuel Friese discusses his pioneering discoveries 1:34
Dr. Amit Bar-Or shares encouraging results from two important clinical trials 16:27
Dr. Haritha Desu discusses her research 25:27
Share this episode 32:23
Next week's episode 32:42
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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RealTalk MS Episode 441 Guests: Dr. Manuel Friese, Dr. Amit Bar-Or, and Dr. Haritha Desu
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This past December, the FDA issued a Complete Response Letter to drug manufacturer Sanofi in response to Sanofi's application seeking approval for Tolebrutinib, the first in a new category of investigational disease-modifying therapies to undergo FDA review. A Complete Response Letter is an official letter from the FDA to a drug manufacturer stating that the agency can't approve a new medicine in its current form. It's not an outright "no" that kills a project; it's more like a "not yet." However, this Complete Response Letter raised some issues which, at first glance, don't appear to be easily fixable. Sanofi has pointed out that the issues raised in the Complete Response Letter were markedly different from the guidance they received from the FDA over the course of this approval process. Sanofi has also indicated that it would work with the FDA to find a path forward for Tolebrutinib.
Dr. William Conte, an MS Specialist and a principal investigator in the Phase 3 clinical trial for Tolebrutinib, has published an article responding to the FDA's Complete Response Letter. This week, Dr. Conte joins me to discuss the FDA's action and his response to that action.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're at the 2026 ACTRIMS Forum :22
Check out the official ACTRIMS Forum Insider podcast! :42
The FDA's Complete Response Letter about Tolebrutinib 1:09
Dr. William Conte responds to the FDA's Complete Response Letter 4:09
Share this episode 38:10
Next week's episode 38:30
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 440 Guests: Dr. William Conte
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The first coordinated global research strategy to prevent MS has been announced. This week, Dr. Bruce Bebo, the National MS Society's Executive Vice President and Chief Research & Medical Affairs Officer, joins me to explain what MS prevention looks like and how experts plan to achieve this remarkable goal. We'll also tell you who won the 2025 Barancik Prize for Innovation in MS Research, and we'll explain how their groundbreaking research impacts MS care.
We're sharing the details of a newly announced partnership designed to reduce delays in getting an MS diagnosis and expand access to MS care in Wisconsin.
We'll tell you how an international drug discovery network found that a drug already approved for another condition could also protect nerve cells and promote remyelination.
And we'll share research that shows that AI can accurately predict whether someone newly diagnosed with MS will experience progression independent of relapse activity (PIRA) in the three years following their diagnosis.
We have a lot to talk about! Are you ready for RealTalk MS??!
I'm asking for your support: :22
This Week: Preventing MS 1:47
Dr. Manuel Friese is the winner of the 2025 Barancik Prize for Innovation in MS Research 2:41
National MS Society announces a partnership to improve time to MS diagnosis and access to MS care in Wisconsin 6:26
An international drug discovery network identifies a drug that protects nerve cells and promotes remyelination 8:05
STUDY: AI accurately predicts progression independent of relapse activity in individuals who are newly diagnosed with MS 10:51
Dr. Bruce Bebo explains the strategy behind the global research initiative to prevent MS 14:48
Share this episode 31:31
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Support Jon at WALK MS https://realtalkms.com/walkms
RealTalk MS Episode 424: I'm a Participant in a Clinical Trial for CAR T-Cell Therapy for MS with Jan Janisch-Hanzlik https://realtalkms.com/424
STUDY: In Silico Screening and Preclinical Validation Identify Bavisant as a Therapeutic Candidate for Multiple Sclerosis https://science.org/doi/10.1126/scitranslmed.ads0633
STUDY: Machine Learning Analysis Applied to Prediction of Early Progression Independent of Relapse Activity in Multiple Sclerosis Patients https://onlinelibrary.wiley.com/doi/10.1111/ene.70417
Find out about ABLEnow Accounts https://ablenow.com
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RealTalk MS Episode 439 Guests: Dr. Bruce Bebo
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One of the more confusing aspects of MS is that it can present differently from one person to the next. A research team at University College London may have uncovered a reason for that when they identified two new, and quite different, subtypes of MS. Joining me to walk us through this discovery and to explain how it may impact MS clinical care is the study's principal investigator, Dr. Arman Eshaghi.
We're also sharing study results that may explain how the Epstein-Barr Virus triggers MS in some individuals.
We'll tell you about the free online fitness and wellness programs for veterans living with MS offered by the Paralyzed Veterans of America.
And we'll explain how the latest entrant in the AI for healthcare revolution can prepare you for your next appointment with your neurologist.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Discovering 2 new subtypes of MS :22
Study results show how the Epstein-Barr Virus may trigger MS 1:20
The PVA is offering free online fitness and wellness classes for veterans with MS 5:45
Claude for Healthcare joins the AI in healthcare revolution 7:03
Dr. Arman Eshaghi discusses his team's discovery of 2 subtypes of MS 9:59
Share this episode 28:15
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
EBV Infection and HLA-DR15 Jointly Drive Multiple Sclerosis by Myelin Peptide Presentation https://www.cell.com/cell/fulltext/S0092-8674(25)01495-3
STUDY: Combined Magnetic Resonance Imaging and Serum Analysis Reveals Distinct Multiple Sclerosis Types https://academic.oup.com/brain/article/148/12/4578/8321558
PVA Offers Free Online Fitness & Wellness Classes for Vets with MS https://pva.org/sports-recreation/online-programs
Find out about ABLEnow Accounts https://ablenow.com
Claude for Healthcare https://claude.com/solutions/healthcare
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 438 Guests: Dr. Arman Eshaghi
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I don't have to remind anyone who listens to this podcast that the cost of MS disease-modifying therapies is obscenely high. And we're not just talking about relatively new medications. Older medications -- some decades old -- continue to increase in price without any rational explanation for why or how. On January 2nd, we lost a true warrior in the ongoing battle to lower the price of prescription drugs when David Mitchell, the founder of Patients for Affordable Drugs, passed away. I met David in 2018 at a National MS Society Public Policy Conference, and he was a guest on Episode 31 of RealTalk MS. This week, I'm re-sharing the conversation we had in 2018.
We'll also tell you about an international workshop that represents the initial steps in developing a global research agenda to end MS.
We're explaining how AI is about to have a major impact on healthcare.
And we'll share the American Medical Association's brief to Congress, making the case for extending access to telehealth.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're remembering David Mitchell :22
The first steps toward a global research agenda to prevent MS were just published 1:02
Doctor AI will see you now 5:45
The American Medical Association asks lawmakers to extend access to telehealth 10:27
David Mitchell in his own words 12:41
Share this episode 27:56
Next week 28:16
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Patients for Affordable Drugs https://patientsforaffordabledrugs.org
PAPER: Toward a Global Research Agenda for Preventing Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/13524585251398381
AMA BRIEF: The Case for Permanent Telehealth Policy and Expanded Access to Virtual Care https://ama-assn.org/system/files/issue-brief-telehealth-policy-expanded-access-to-virtual-care.pdf
ChatGPT Health https://openai.com/index/introducing-chatgpt-health
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 437 Guests: David Mitchell
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Scientists are expanding our understanding of MS at an unprecedented pace. This week, Dr. Leorah Freeman discusses why, as new discoveries and medications enter clinical practice, neurologists and MS specialists should ask themselves 3 important questions when considering a patient's treatment plan.
Dr. Freeman is the Director of the Multiple Sclerosis and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin, where she also leads the MS and Neuroimmunology fellowship program and the MS Imaging and Outcomes Research Laboratory.
We'll also tell you about study results that reveal two distinct biologically-informed MS subtypes.
We're explaining some of the confusing background to the FDA's decision not to approve a disease-modifying therapy that achieved positive results in its Phase 3 clinical trial.
And did we really need a study to tell us that people living with MS fear experiencing a relapse or disease progression? Well, yes. We'll explain why.
We're also reminding you to mail your insurance premium payments and other important documents earlier than you have in the past.
And we're sharing details about the two clinical trials that received $4.1 million in funding as part of the International Progressive MS Alliance Experimental Medicine Trial Awards.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: 3 questions your neurologist should be asking themselves :22
Public Service Announcement: How the new rule about postmarks could affect your healthcare 1:16
FDA says it's not ready to approve Tolebrutinib 3:16
Study identifies two biologically-informed MS subtypes 6:29
Study results remind us that people with MS fear relapse and progression 10:09
The International Progressive MS Alliance invests $4.1 million in two clinical trials 14:04
Dr. Leorah Freeman discusses why neurologists need to ask themselves 3 important questions when considering a patient's treatment plan 17:18
Share this episode 33:16
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The Multiple Sclerosis Insider https://themultiplesclerosisinsider.substack.com
STUDY: Combined Magnetic Resonance Imaging and Serum Analysis Reveals Distinct Multiple Sclerosis Types https://academic.oup.com/brain/article/148/12/4578/8321558
STUDY: Fear of Disease Progression and Relapse in Multiple Sclerosis: A Systematic Scoping Review https://frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2025.1680781/full
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 436 Guests: Dr. Leorah Freeman
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We're closing out the year by revisiting the most listened-to episode of RealTalk MS in 2025. And it shouldn't come as a major surprise that this year's most listened-to episode wasour review of the largest MS research conference in the world, ECTRIMS. This episode features the annual conversation that I have with Dr. Bruce Bebo, right outside of the conference center, just minutes after ECTRIMS adjourns. Dr. Bebo is the Executive Vice President of Research at the National MS Society, and each year, he very generously closes out 3 days of nonstop meetings, presentations, and research reviews by sharing his initial thoughts on the announcements and presentations that caught his eye during the conference. When I produced this episode last September, I also wanted to capture a patient's perspective on what can easily become an overwhelming 3 days of presentations, news, and announcements. Kristine Werner Ozug, a member of the RealTalk MS team who lives with MS, joined me right after the conference to share her perspective on ECTRIMS 2025. We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: ECTRIMS 2025 :22
Dr. Bruce Bebo shares his first impressions of the news and research presented at ECTRIMS 2025 1:22
Kristine Werner Ozug weighs in with an MS patient's perspective on the news and research presented at ECTRIMS 2025 10:35
Share this episode 22:45
Next week on RealTalk MS 23:06
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS at ECTRIMS 2025 on YouTube https://www.youtube.com/playlist?list=PLATxgj1uHpxNoXakZif9TEkKT6mQSwX_9
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 435 Guests: Dr. Bruce Bebo and Kristine Werner Ozug
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The holiday season gives me the opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes in December to revisit the most popular conversations that I've had over the past year. Women represent two-thirds of the MS population. Yet, surprisingly, there isn't nearly enough data related to women's health issues and MS. With an estimated 300,000 women living with MS in the United States who are currently in peri- or post-menopause, researchers have started to focus on how menopause and MS interact, and the best ways to treat symptoms of each. This brings me to a conversation I had last March about managing menopause while managing MS with Dr. Riley Bove. Dr. Bove is a neurologist and the founding director of the Sex and Gender-Enriched (SAGE) Neurology Program at the University of California, San Francisco, and she's considered one of the world's foremost experts on women's health issues and MS. We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing menopause while you're managing MS :22
Dr. Riley Bove discusses some of the issues facing the estimated 30% of the MS population who are currently in peri- or post-menopause 1:53
Share this episode 20:30
Next week on RealTalk MS 20:51
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Just copy this link & paste it into your text or email: https://realtalkms.com/434
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS at ECTRIMS 2025 on YouTube https://www.youtube.com/playlist?list=PLATxgj1uHpxNoXakZif9TEkKT6mQSwX_9
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 434 Guests: Dr. Riley Bove
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As the year draws to a close, we wanted to share some of the most compelling conversations we've had over the past 12 months. And rather than make my own picks, we went through the hundreds of emails we've received over the past year from the RealTalk MS listener community to see which topics really connected with you.
In this week's episode, you'll hear from four of the top MS experts in the world discussing the subjects you've told me are most important to you.
First, we'll explore aging and MS with Dr. John Corboy, the principal investigator of the largest study designed to answer the question, "Once I turn 60, can I discontinue my disease-modifying therapies?"
We'll talk about remyelination with the winner of the 2025 Barancik Prize for Innovation in Multiple Sclerosis Research, Dr. Mikael Simons.
You'll hear our conversation with one of the world's top MS rehabilitation experts, Dr. John DeLuca, as we tackle one of the most disruptive MS symptoms -- fatigue.
And we'll wrap up this episode by talking with clinician-scientist Dr. Stephen Krieger about the confusion around trying to reconcile the idea of progression independent of relapse activity (PIRA) with a diagnosis of relapsing-remitting MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Our most important conversations of 2025 :22
Dr. John Corboy discusses aging and MS 1:07
Dr. Mikael Simons discusses remyelination 10:54
Dr. John DeLuca discusses MS-related fatigue 19:20
Dr. Stephen Krieger discusses how the current course descriptors for MS (relapsing-remitting, secondary progressive, primary progressive) may no longer be working for doctors or patients 26:11
Share this episode 42:10
Next week's episode 42:30
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Just copy this link & paste it into your text or email: https://realtalkms.com/433
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 433 Guests: Dr. John Corboy, Dr. Mikael Simons, Dr. John DeLuca, Dr. Stephen Krieger
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This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada. Please note this episode is only intended for a U.S. audience.
In this special episode of RealTalk MS, Professor Elisabeth Celius and Amanda Montague join me to explore new consensus recommendations for the future of MS care from MS in the 21st Century. We'll hear what experts and people in the MS community think are the priorities to focus on to improve care and help lessen the burden of living with MS.
Professor Elisabeth Celius is a consultant neurologist with a special focus on MS at Oslo University Hospital in Norway, where she is the group leader of the MS Research Group and also conducts epidemiological, genetic, and clinical research.
Amanda Montague is a global thought leader and Interim President & CEO of the Multiple Sclerosis Association of America.
Both Amanda and Elisabeth are active members of the MS in the 21st Century initiative, more commonly known as MS21. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals, people with MS, and patient advocacy groups.
To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Michael Jordan never won an NBA championship until he was paired with the right coach. Then, he won six. Could working with a coach change your MS journey?
In this week's episode, health & wellness coach Amy Behimer explains what health coaching is all about and how working with a coach might impact someone living with MS.
We're also sharing study results that show DMTs fail to manage MS-related pain. Then, we'll explain how a common misconception can lead to the wrong outcome for someone with MS.
And we'll share study results showing that adhering to the Mediterranean or MIND diet improves cognitive performance among people living with MS. We'll also explain why this study raises as many questions as it seeks to answer.
We have a lot to talk about! Are you ready for RealTalk MS??!
Thank you! :22
This Week: What working with a health coach is all about 1:08
Study results show that disease-modifying therapies don't help manage MS-related pain (But are they supposed to???) 2:29
Study results show that adhering to the Mediterranean or MIND diet improves cognitive performance among people with MS (Or does it??) 5:13
Health & Wellness Coach Amy Behimer explains how someone living with MS could benefit from coaching 12:11
Share this episode 39:33
Next week's episode 39:53
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Just copy this link & paste it into your text or email: https://realtalkms.com/432
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
DONATE: The National MS Society https://nationalmssociety.org/donate
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Phase 2 Clinical Trial for Moderna's EBV Vaccine and MS https://www.msard-journal.com/article/S2211-0348(25)00573-5/fulltext
STUDY: Mediterranean and MIND Diet Patterns and Cognitive Performance in Multiple Sclerosis: A Cross-Sectional Analysis of the UK Multiple Sclerosis Register https://www.mdpi.com/2072-6643/17/21/3326
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 432 Guests: Amy Behimer
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Welcome to a RealTalk MS special series on MS clinical trials. This special series is made possible through a generous grant from Sanofi.
In this final episode of this series, you'll meet Jan Janisch-Hanzlik. Jan lives with MS and is a participant in one of the clinical trials evaluating the safety and efficacy of CAR-T cell therapy for MS.
In CAR-T cell therapy, blood is taken from the patient or a healthy donor, much as you would donate blood. This blood is sent to a lab, where the white blood cells, or T-cells, are separated out and reprogrammed to carry a receptor designed to fight a particular condition. This receptor is known as a chimeric antigen receptor, or CAR.
Over several weeks in the lab, these fortified T-cells multiply until there are millions of them, then they're reintroduced to the patient by intravenous infusion. CAR-T cell therapy is already used to treat some blood cancers, and Jan is the first person in the world to receive this one-and-done treatment to treat MS. She's joining us to share her experience participating in the clinical trial and to give us an update on how she's doing following her treatment.
This special episode of RealTalk MS is made possible by a generous grant from Sanofi. Sanofi has two ongoing Phase 3 clinical trials in MS studying Frexalimab, an investigational second-generation anti-CD40 ligand monoclonal antibody. If you are interested in learning more about these clinical trials, please visit SanofiStudies.com
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At the age of 14, Michaela Janssen Pohl became a caregiver for her mother, who lives with MS.
I think most of us can agree that just being a teenager carries with it more than enough challenges. Those adolescent years are the years when just about everything in life starts changing. Imagine adding the responsibilities of being a caregiver to all the other things going on in a 14-year-old girl's life. Michaela joins me this week to explain how she found ways to survive and thrive in what can only be described as a challenging situation for any teenager.
We'll also explain why you might want to think a little differently about Giving Tuesday this year.
We're sharing all the details about the Phase 2 clinical trial focusing on Moderna's investigational Epstein-Barr vaccine and MS (and we'll explain why that might turn out to be important!)
We're talking about how MS impacts women's health issues with this year's winner of the Rachel Horne Prize for Women's Research in Multiple Sclerosis, Dr. Kristen Krysko.
And we're sharing the results of the Phase 2 clinical trial for PIPE-307, an investigational remyelination therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
It's Giving Tuesday (and why that matters more this year than ever before) :22
This Week: Becoming a caregiver for a parent with MS when you're 14 years old 3:27
A clinical trial focused on an EBV vaccine and MS is recruiting participants 4:25
Dr. Kristen Krysko discusses MS and women's health issues 7:52
Results from the Phase 2 clinical trial for PIPE-307 remyelination therapy 13:48
Michaela Janssen Pohl shares her story of becoming a caregiver at the age of 14 16:55
Share this episode 33:20
Next week's episode 33:40
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Just copy this link & paste it into your text or email: https://realtalkms.com/431
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
DONATE: The National MS Society https://nationalmssociety.org/donate
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
PARTICIPATE: Phase 2 Clinical Trial for Moderna's EBV Vaccine and MS https://clinicaltrials.gov/study/NCT06735248 Email: WeCareClinicalTrials@modernatx.com
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 431 Guests: Dr. Kristen Krysko, Michaela Janssen Pohl
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Almost everyone with MS is aware of their sensitivity to heat. But cold weather presents a whole different set of challenges that we don't always think about. This week, I'm talking with Dr. James Stark about safely navigating cold-weather conditions when you're living with MS.
Dr. Stark is the Senior Attending Neurologist and Associate Medical Director at the International Multiple Sclerosis Management Practice. And he's sharing tips for staying safe and healthy when the temperature starts to drop.
The FDA has just approved a new generic DMT, and the first biosimilar for MS is hitting the market. We'll tell you about these new disease-modifying therapy options, and we'll bring you up to speed on what biosimilars are all about.
I ran into Dr. Robert Fox at ECTRIMS, the world's largest MS research conference. And, in a brief conversation, Dr. Fox provided a great overview of the MS research landscape. You won't want to miss this conversation!
If you missed the International Progressive MS Alliance's global webcast, Hidden Potential: How Existing Drugs Could Transform MS Treatment, you can still catch the video replay. We're sharing all the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: There's a lot to still be thankful for :22
Your opportunity to support the organization that supports you 2:03
What you need to know about the new generic and biosimilar disease-modifying therapies 9:24
The Cleveland Clinic's Dr. Robert Fox shares an overview of the MS research landscape 10:29
Catch the International Progressive MS Alliance Global Webcast video replay 22:41
Dr. James Stark shares tips for navigating winter weather when you're living with MS 23:27
Share this episode 35:14
Next week's episode 35:35
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Just copy this link & paste it into your text or email: https://realtalkms.com/430
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
DONATE to the National MS Society https://nationalmssociety.org/donate
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
WATCH: International Progressive MS Alliance Global Webcast Replay https://youtube.com/watch?v=hWK-iVMiQ_I
LISTEN: RealTalk MS EP. 315: Understanding Generic and Biosimilar Drugs for MS with Dr. Jiwon Oh https://realtalkms.com/315
VISIT: Mark Cuban Cost Plus Drugs https://costplusdrugs.com
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 430 Guests: Dr. Robert Fox, Dr. James Stark
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Welcome to a RealTalk MS special series on MS clinical trials. This special series is made possible through a generous grant from Sanofi.
In today's episode, you'll meet two participants from the TEAMS Study, a research study at the University of Illinois Chicago's UI Health, in conjunction with the University of Alabama Birmingham School of Public Health.
TEAAMS is an acronym for Targeted Exercise for African-Americans with Multiple Sclerosis. And the study's research team analyzed the effects of a remotely delivered, racially tailored exercise training program among African Americans with MS living in low-income areas of the Southeastern United States, including Alabama, Georgia, Mississippi, North Carolina, South Carolina, Louisiana, Arkansas, and Tennessee. This is a part of the country that doesn't have many primary care or MS clinics that provide full exercise and rehabilitation services for patients with MS.
The TEAMMS study consists of two 16-week exercise programs, completed 3 days per week at home. One exercise program combines aerobic and resistance training, while the other focuses on stretching and flexibility. Study participants were randomly assigned to one of the two programs, and all of the materials to complete each program, like yoga mats, resistance bands, and training manuals, were provided. And every study participant receives a $90 gift card in compensation for completing the program.
The study's research team hypothesizes that completing the TEAAMS program would improve walking, reduce symptoms of fatigue, anxiety, depression, and pain, and enhance quality of life.
This special episode of RealTalk MS is made possible by a generous grant from Sanofi. Sanofi has two ongoing Phase 3 clinical trials in MS studying Frexalimab, an investigational second-generation anti-CD40 ligand monoclonal antibody. If you are interested in learning more about these clinical trials, please visit SanofiStudies.com
SHARE THIS EPISODE OF REALTALK MS
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
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Being a caregiver for a loved one with MS isn't an easy job. And, while it may consume hours of your time, often, it's not your only job. Many caregivers are the only family members bringing in an income. So, in addition to their caregiving responsibilities, they may also be facing the responsibilities that go along with holding down a full-time job.
This week, Diana Grazio joins me to discuss how she balances her roles and responsibilities as her partner's caregiver while holding down a full-time job.
You have online opportunities tomorrow! Participate in the National MS Society's Hispanic LatinX MS Experience Summit, or catch the International Progressive MS Alliance's global webcast, How Existing Drugs Could Transform MS Treatment. We have all the info for you to register for either or both!
If you purchase your health insurance through the ACA Healthcare Marketplace, you've probably already been notified that your premiums will skyrocket in 2026. MS Activist, Sarah Quezada, shares how those premium increases will affect her family.
Roche has announced the outcomes of Phase 3 clinical trials for Fenebrutinib and Relapsing MS, and Primary Progressive MS. It's positive news, and we have the details!
Could nanoparticles penetrate the blood-brain barrier and deliver anti-inflammatory medication directly to the central nervous system? University of Illinois researchers say yes! We're sharing the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's National Family Caregiver Month :22
The MS Care Partner Connection :34
The National MS Society is hosting the Hispanic LatinX MS Experience Summit TOMORROW! 2:20
The International Progressive MS Alliance Global Webcast is TOMORROW! 2:51
Sarah Quezada shares how astronomical increases in ACA health insurance premiums will affect her family 3:46
Roche announces outcomes for Phase 3 clinical trials for Fenebrutinib and Relapsing MS, and Primary Progressive MS 11:59
Could nanoparticles penetrate the blood-brain barrier and deliver anti-inflammatory medication directly to the central nervous system? 13:43
Diana Grazio discusses how she manages her role as a caregiver while holding down a full-time job 16:07
Share this episode 29:10
Next week's episode 29:30
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Just copy this link & paste it into your text or email: https://realtalkms.com/429
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Online Survey https://s.alchemer.com/s3/Perspectives-on-MS
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
REGISTER: The Hispanic LatinX MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience
REGISTER: International Progressive MS Alliance Global Webcast https://msif.org/news/2025/11/03/alliance-webcast
VISIT: The MS Care Partner Connection https://mscarepartnerconnection.com
STUDY: Nanoparticle-Boosted Myeloid-Derived Suppressor Cell Therapy for Immune Reprogramming in Multiple Sclerosis https://www.science.org/doi/10.1126/sciadv.ady4135
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 429 Guests: Sarah Quezada, Diana Grazio
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As researchers continue to learn about MS, it becomes clear that you can change the trajectory of your MS journey and improve your quality of life by making smart lifestyle choices. Quitting smoking and watching your alcohol and caffeine consumption are smart choices for everyone, and they can pay especially big dividends if you're living with MS.
This week, Dr. Barbara Giesser discusses how smoking, consuming alcohol, and consuming caffeine can impact your MS.
We're also sharing the details about the Black MS Experience Summit taking place on November 12th, and the Hispanic LatinX MS Experience Summit taking place on November 19th.
We'll tell you about a study that revealed what may be a novel way of stimulating remyelination.
You'll meet Dr. Arman Eshaghi and hear about how artificial intelligence may impact your future MRI exam.
We'll share study results that show that carbohydrate consumption may increase the risk of an individual developing MS.
And we'll tell you about a study that looked at the connection between starting a disease-modifying therapy early and quality of life related to cognitive function and fatigue.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: What you need to know about how smoking, consuming alcohol, and consuming caffeine impact your MS :22
The Black MS Experience Summit is TOMORROW! 1:32
The National MS Society is hosting the Hispanic LatinX MS Experience Summit on Nov 19th 2:33
Study results indicate the path to myelin repair may require subtraction, not addition 3:04
Dr. Arman Eshaghi discusses how AI may change how MRI scans are interpreted 5:12
Study results show a connection between carbohydrate intake and MS risk 15:10
Study results show how starting a DMT early impacts quality of life related to cognitive function and fatigue among people with MS 17:55
Dr. Barbara Giesser discusses how smoking, consuming alcohol, and consuming caffeine impact people living with MS 21:38
Share this episode 31:07
Next week's episode 31:27
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Just copy this link & paste it into your text or email: https://realtalkms.com/428
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Online Survey https://s.alchemer.com/s3/Perspectives-on-MS
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
WATCH: The RealTalk MS ECTRIMS Extra Conversations video playlist on YouTube https://realtalkms.com/ectrims2025
STUDY: Gt2fi-Encoded Transcription Factor Tfii-i Regulates Myelin Via Sox10 and Mbp Regulatory Elements https://www.nature.com/articles/s41467-025-63500-4
STUDY: Association Between Dietary Carbohydrate Intake and Multiple Sclerosis Risk: A Large-Scale Cohort Study https://www.frontiersin.org/journals/nutrition/articles/10.3389/fnut.2025.1654538/full
STUDY: Self-Reported Quality of Life Related to Cognitive Function and Fatigue in Adults with Multiple Sclerosis https://www.sciencedirect.com/science/article/abs/pii/S2211034825005516
REGISTER: The Black MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/black-ms-experience
REGISTER: The Hispanic LatinX MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 428 Guests: Dr. Arman Eshaghi, Dr. Barbara Giesser
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When you're living with a chronic condition like MS, you want to be sure you're doing everything you can to preserve and promote good health. And, right now, you may be feeling confused about whether you should be getting vaccinated, and which vaccines are safe. It's understandable. Unfortunately, there's a lot of confusing information about vaccines and vaccinations floating around out there.
This week, Dr. Lisa Doggett helps us get past all the unnecessary noise and hysteria and reviews the science-based vaccine recommendations for people living with MS.
We're also talking about the historic meeting that took place last week between the FDA and people affected by MS.
We're sharing dramatic results from the largest study of its kind that measured the true impact of MS on quality of life.
And we're giving you all the details about the National MS Society's upcoming Black MS Experience Summit.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Reliable, science-based vaccine guidance for people living with MS :22
An historic meeting between the FDA and the MS community 1:17
The largest study of its kind shows the true impact of MS on quality of life 3:13
The National MS Society is hosting the Black MS Experience Summit on Nov 12th 4:40
Dr. Lisa Doggett covers everything you need to know about vaccines and MS 6:22
Share this episode 26:10
Next week's episode 26:30
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Just copy this link & paste it into your text or email: https://realtalkms.com/427
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Online Survey https://s.alchemer.com/s3/Perspectives-on-MS
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
WATCH: The RealTalk MS ECTRIMS Extra Conversations video playlist on YouTube https://realtalkms.com/ectrims2025
STUDY: EQ-5D-5L In Multiple Sclerosis: Estimated Utility Values, Minimal (Clinically) Important Changes, and Direct and Indirect Influences Over Time https://valueinhealthjournal.com/article/S1098-3015(25)02486-6/fulltext
REGISTER: The Black MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/black-ms-experience
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 427 Guests: Dr. Lisa Doggett
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Some disease-modifying therapies can change the trajectory of your MS journey. But gaining access to those medications isn't always as easy or straightforward as it should be. In the United States, insurance companies are most often the gatekeepers to prescription medications.
This week, Cassandra Ashby shares a story that many of you may already be too familiar with, as she takes us through her family's long, hard, and confusing struggle to get the DMT that her newly-diagnosed daughter's neurologist prescribed. I
We're also talking about the game-changing results of a study that demonstrate MS-related damage to the brain occurs years before the very first symptom becomes apparent. And we're explaining why this opens the door to treatment that may stop MS symptoms from even developing.
We're giving you a heads-up about changes to the way health records for MS patients are being coded, and how these changes are already creating obstacles to accessing the disease-modifying therapy that you may have been taking for months or years.
And we're reminding you that you still have time to register to participate virtually in tomorrow's historic meeting between people with MS and the FDA
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The sometimes overwhelming challenge of gaining access to the disease-modifying therapy that's been prescribed by your MS Specialist :22
Study results demonstrate MS-related brain damage occurs years before MS symptoms 1:22
What are ICD-10 codes, and why do the latest changes to these codes pose potential challenges for people living with MS? 5:52
You can participate virtually in tomorrow's meeting between people with MS and the FDA 9:23
Cassandra Ashby shares her family's long, hard, and confusing struggle with their insurance company 10:56
Share this episode 31:06
Next week's episode 31:26
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Just copy this link & paste it into your text or email: https://realtalkms.com/426
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Myelin Injury Precedes Axonal Injury and Symptomatic Onset in Multiple Sclerosis https://nature.com/articles/s41591-025-04014-w
WATCH: The RealTalk MS ECTRIMS Extra Conversations video playlist on YouTube https://realtalkms.com/ectrims2025
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 426 Guests: Cassandra Ashby
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Just about a month ago, 9,600 researchers, clinicians, and representatives from patient advocacy organizations gathered in Barcelona for the European Committee on Treatment and Research in MS annual scientific congress, better known as ECTRIMS, the largest MS research conference in the world.
Now that he's had an opportunity to review his notes and digest all of the science presented at ECTRIMS 2025, Dr. Bruce Bebo, the National MS Society's Executive Vice-President of Research, returns to the podcast to take us on a deep dive covering some of the most important research presented this year.
We're also talking about next-generation CAR T-cell therapy for MS, and we'll explain why it's such exciting news.
We're sharing details about a DNA-based therapy for overactive bladder that just received fast-track status from the FDA.
We'll tell you about a new effort to develop a simple blood test that will detect MS progression.
We have some news to share about the RealTalk MS app. And we want to remind you to check out our ECTRIMS Extra Conversations video playlist on the RealTalk MS YouTube channel!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A deep dive into the research presented at ECTRIMS 2025 :22
Kernal Biologics received $48 million grant for the next-generation CAR T-Cell therapy 2:35
FDA grants fast track designation to DNA-based therapy to treat overactive bladder 6:02
Octave Bioscience receives grant to develop a blood test to detect MS progression 8:30
News about our app 9:42
Have you checked out our ECTRIMS Extra Conversations YouTube playlist? 10:30
Dr. Bruce Bebo discusses some of the most important research presented at ECTRIMS 2025 11:06
Share this episode 32:26
Next week's episode 32:47
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Just copy this link & paste it into your text or email: https://realtalkms.com/425
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
LISTEN: RealTalk MS Ep 422: From ECTRIMS 2025 with Dr. Bruce Bebo and Kristine Werner Ozug https://realtalkms.com/422
WATCH: The RealTalk MS ECTRIMS Extra Conversations video playlist on YouTube https://realtalkms.com/ectrims2025
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
DOWNLOAD: The RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
DOWNLOAD: The RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 425 Guests: Dr. Bruce Bebo
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Jan Janisch-Hanzlik lives with MS and is a participant in one of the clinical trials evaluating the safety and efficacy of CAR-T cell therapy for MS. Jan is the first person in the world to receive this one-and-done treatment, and this week, she's joining me to share her experience participating in the clinical trial. But you'll be especially interested in hearing how CAR-T cell therapy has impacted Jan's MS.
Open enrollment for people with Medicare and for those who get their health insurance through the ACA healthcare.gov Marketplace begins this week, and we're talking about some of the reasons you want to pay particular attention to your 2026 health insurance options.
As the U.S. federal government shutdown enters its third week, we're reviewing some of the ways that the shutdown may affect someone living with MS.
And we're giving you a reminder about how you can add your voice and share your story of living with MS with the FDA by participating in the Shaping Tomorrow Together initiative.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A first-hand account of an important clinical trial, open enrollment begins, and how the government shutdown may affect people with MS :22
Open enrollment for Medicare and Marketplace enrolees begins :22
How the federal government shutdown could affect people living with MS 4:29
Your opportunity to tell the FDA what it's like to live with MS 8:57
Jan Janisch-Hanzlik shares her experience participating in a CAR-T cell therapy clinical trial, and how the treatment has impacted her MS 11:28
Share this episode 31:38
Next week's episode 31:57
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Just copy this link & paste it into your text or email: https://realtalkms.com/424
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
DOWNLOAD: The RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
DOWNLOAD: The RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 424 Guest: Jan Janisch-Hanzlik
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Welcome to a RealTalk MS special series on MS clinical trials. This special series is made possible through a generous grant from Sanofi. In today's episode, we're exploring the risks and rewards of participating in a clinical trial with Dr. Kathy Zackowski and Mimi Brown. Dr. Zackowski is the Associate Vice President of Research at the National MS Society, and she's going to offer an overview of the risks and benefits that you'll want to weigh in considering participating in a clinical trial. Mimi Brown lives with primary progressive MS, and Mimi is going to share her own experience as a participant in multiple clinical trials. This special episode of RealTalk MS has been made possible through a generous grant from Sanofi. Sanofi has two ongoing Phase 3 clinical trials in MS studying Frexalimab, an investigational second-generation anti-CD40 ligand monoclonal antibody. If you are interested in learning more about these clinical trials, please visit SanofiStudies.com
SHARE THIS EPISODE OF REALTALK MS
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
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From the earliest days of the COVID-19 pandemic, people living with MS have been justifiably concerned about how a COVID-19 infection might impact their MS. As the new "Stratus" strain of COVID-19 is currently surging in the United States, research is providing answers we didn't have five years ago.
Dr. Robert Fox, the Managing Director of the NARCOMS Patient Registry, joins me to discuss how COVID-19 infections and other infections impact people with MS.
As ECTRIMS, the world's largest MS research conference, approached, many attendees anticipated the FDA's decision on whether to approve Tolebrutinib, the first in a new category of disease-modifying therapies. Instead, the FDA has requested additional time for its review. We'll fill you in on the FDA's new target action date, and explain why there's strong interest in this particular disease-modifying therapy.
We know there's a specific gene that increases the risk of someone developing MS. But have you ever wondered where that gene came from, or why it exists at all? At ECTRIMS, Professor Lars Fugger took us on a journey 5,000 years into the past to explain its origin. When I spoke with him, Professor Fugger also explained how events from ancient history are still affecting the risk of developing MS today. You won't want to miss this compelling conversation!
At ECTRIMS, I also caught up with Jason Tardio, the President, and Dr. Andreas Muehler, the Chief Medical Officer, from Immunic Therapeutics. We talked about how their investigative drug, vidofludimus calcium, could potentially benefit people with MS by combating inflammation, protecting the nervous system, and offering antiviral benefits.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Infections and MS, and more from ECTRIMS 2025! :22
FDA extends its review of Tolebrutinib 1:42
From ECTRIMS: Professor Lars Fugger discusses the origin of the gene that increases an individual's risk of developing MS 4:11
From ECTRIMS: Jason Tardio, President, and Dr. Andreas Muehler, Chief Medical Officer, at Immunic Therapeutics, discuss how vidofludimus calcium could potentially benefit people with MS 11:22
Dr. Robert Fox discusses what the research reveals about how COVID-19 infections and other infections impact people living with MS 16:34
Share this episode 32:00
Next week's episode 32:19
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Just copy this link & paste it into your text or email: https://realtalkms.com/423
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
DOWNLOAD: The RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
DOWNLOAD: The RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 423 Guests: Professor Lars Fugger, Jason Tardio, Dr. Andreas Meuhler, and Dr. Robert Fox
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Last week, over 9600 MS researchers and clinicians gathered in Barcelona for the European Committee for Treatment and Research in Multiple Sclerosis annual scientific congress -- ECTRIMS 2025.
Minutes after the conference adjourned, in what has become an annual tradition, Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society, joined me to share his initial thoughts on the science presented at the meeting.
Then, Kristine Werner Ozug, a member of the RealTalk MS team who lives with MS, joined me to share her perspective on three non-stop days of presentations, news, and announcements.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's all about ECTRIMS 2025! :22
The Executive Vice President of Research at the National MS Society, Dr. Bruce Bebo, shares his initial impressions of ECTRIMS 2025 1:17
As someone who lives with MS, Kristine Werner Ozug shares her thoughts on ECTRIMS 2025 10:03
Share this episode 22:30
Next week's episode 22:50
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Just copy this link & paste it into your text or email: https://realtalkms.com/422
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
DOWNLOAD: The RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
DOWNLOAD: The RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 422 Guests: Dr. Bruce Bebo and Kristine Werner Ozug
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Happy birthday to us! RealTalk MS is 8 years old today! It's hard for me to believe that the podcast I launched in 2017, with the goal of one day reaching 300 listeners, today reaches thousands of people living with MS, their care partners, MS researchers, and clinicians in more than 100 countries.
So, let me start this week's show notes with a profound thank you to each of you for being an important part of the RealTalk MS listener community. Your ongoing engagement is a constant reminder that our podcast is a two-way conversation. And I'm looking forward to continuing the conversation until we can talk about MS in the past tense.
MS can affect memory, attention, and processing speed. But proactive strategies can help preserve your cognitive function and quality of life.
Erin Wilkinson, a nurse practitioner in the Multiple Sclerosis Department of the Cleveland Clinic Lou Ruvo Center for Brain Health, is joining me to help us better understand the relationship between MS and brain health and to share strategies for preserving and even improving brain health.
You'll also meet Jan Bonville, a consultant, speaker, writer, and advocate for inclusive travel and patient empowerment. Jan has lived with MS for twenty years, and our conversation focused on resilience, empowerment, and self-advocacy. As you will hear, these are things that Jan lives every day.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Happy birthday to us and greetings from ECTRIMS! :22
MS advocate Jan Bonville discusses resilience, empowerment, and self-advocacy 4:40
Nurse Practitioner Erin Wilkinson shares strategies for optimizing your brain health 23:03
Share this episode 41:01
Next week's episode 41:21
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Just copy this link & paste it into your text or email: https://realtalkms.com/421
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
LISTEN: RealTalk MS Episode 416: The Updated McDonald Diagnostic Criteria for MS with Dr. Andrew Solomonhttps://realtalkms.com/416
VIDEO: Dr. Robert Fox explains the results of the Phase 3 clinical trial for Tolebrutinib and Non-relapsing secondary progressive MS https://youtube.com/watch?v=tJQ93qdlXrU
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
DOWNLOAD: The RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
DOWNLOAD: The RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 421 Guests: Jan Bonville and NP Erin Wilkinson
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You're living with MS, and maybe you're thinking about participating in an MS clinical trial. But how do they work? Are they safe? What's the difference between Phase 1, 2, and 3 trials? What are the real patient risks and benefits of participating in a clinical trial?
In this special episode of RealTalk MS, we're getting answers to those questions and so much more from my guest, Dr. Aaron Boster.
Dr. Boster is the founder of the Boster Center for Multiple Sclerosis in Columbus, Ohio, where he brings over 20 years of experience as an MS clinician. Dr. Boster has also participated in more than 65 clinical trials.
This special episode of RealTalk MS has been made possible through a generous grant from Sanofi. Sanofi has two ongoing Phase 3 clinical trials in MS studying Frexalimab, an investigational second-generation anti-CD40 ligand monoclonal antibody. If you are interested in learning more about these clinical trials, please visit SanofiStudies.com
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Disease-modifying therapies are the cornerstone of MS treatment, but they're not the only piece of the puzzle. Beyond prescription medications, self-care that includes making healthy lifestyle choices can significantly improve your quality of life with MS.
Julie Polisena knows this firsthand. Julie lives with MS, and in a recent blog post, she shared a comprehensive list of the lifestyle changes that have improved her quality of life with MS. Julie joins us today to discuss some of the most impactful changes you can make to start your own journey toward better health and wellness.
We're also diving into the science behind some of the most talked-about diets for MS. We're breaking down the research on the Mediterranean diet, the Keto diet, the Wahls Diet, the Swank Diet, a gluten-free diet, and intermittent fasting, giving you an overview of the studies that have measured their impact on MS.
We're discussing the latest developments in the ongoing scrutiny of pharmacy benefit managers (PBMs). There's significant pending legal action and a congressional investigation targeting PBMs, the powerful and secretive middlemen in the prescription drug supply chain. And we'll tell you how they've profited at the expense of millions of people with chronic illnesses, including people living with MS.
We'll tell you about a clinical trial that's testing an injectable formulation of Briumvi.
You'll hear about a promising new strategy for myelin repair.
And we'll remind you about a warning from the FDA and Health Canada about glatiramer acetate (Copaxone).
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A DIY approach to improving your MS journey :22
A roundup of studies that focused on popular diets for people with MS 1:53
Congress and the FTC have pharmacy benefit managers in their sites 7:32
TG Therapeutics is testing an injectable form of Briumvi 9:32
A research team has developed a novel remyelination strategy 11:03
A warning about glatiramer acetate has been issued 14:08
Julie Polisena discusses lifestyle changes that can make a difference in your quality of life 16:58
Share this episode 33:24
Next week's episode 33:43
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Just copy this link & paste it into your text or email: https://realtalkms.com/420
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
READ: Small Changes, Big Impact: Managing My MS Through Lifestyle Changes https://mscanada.ca/find-support/blog/small-changes-big-impact-managing-my-ms-through-lifestyle-change
STUDY: The Role of Nutrition and Physical Activity in Modulating Disease Progression and Quality of Life in Multiple Sclerosis https://mdpi.com/2072-6643/17/16/2713
STUDY: Transient Gene Melting Governs the Timing of Oligodendrocyte Maturation https://sciencedirect.com/science/article/abs/pii/S009286742500861X
REVIEW: Copaxone, Glatopa (Glatiramer Acetate) FDA Drug Safety Communication https://www.fda.gov/safety/medical-product-safety-information/copaxone-glatopa-glatiramer-acetate-drug-safety-communication-fda-adds-boxed-warning-about-rare
JOIN: The RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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REVIEW: Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 420 Guest: Julie Polisena
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Some people living with MS adhere to a treatment plan based exclusively on what we might consider traditional medicine. Others opt for alternative treatments. And, still, others take a whole-person health approach, blending integrative medicine with traditional treatments designed to support an individual's mind and body.
Dr. Lynne Shinto joins me to discuss how a whole-person health approach can transform living with MS. Dr. Shinto is a Professor of Neurology and an MS Specialist at the Center for Women's Health at Oregon Health and Science University.
We're also sharing some encouraging news about funding for the National Institutes of Health in 2026.
We'll explain the research that has led to the identification of a new and quite different subtype of MS.
We'll tell you about this year's winner of the Rachel Horne Prize for Women's Research in Multiple Sclerosis.
The National MS Society's virtual program, New to MS: Navigating Your Journey, takes place in just two days. We have all the details!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A whole-person health approach to MS care :22
House Republicans reject President Trump's $20 billion cut to 2026 NIH funding 1:26
Have researchers identified a new MS subtype? 4:16
This year's winner of the Rachel Horne Prize for Women's Research in Multiple Sclerosis 8:27
We're two days away from the National MS Society's New to MS: Navigating Your Journey virtual program 9:53
Dr. Lynne Shinto discusses how taking a whole-person approach to MS care can transform your MS journey 12:04
Share this episode 31:41
Next week's episode 32:01
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Just copy this link & paste it into your text or email: https://realtalkms.com/419
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
SIGN UP: Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Large-Scale Online Assessment Uncovers a Distinct Multiple Sclerosis Subtype with Selective Cognitive Impairment https://nature.com/articles/s41467-025-62156-4
REGISTER: New To MS: Navigating Your Journey https://nationalmssociety.org/understanding-ms/newly-diagnosed/new-to-ms-journey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 419 Guest: Dr. Lynne Shinto
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Living with MS means living with uncertainty, possible physical disability or cognitive dysfunction, bouts of crushing fatigue, mood changes, and let's not forget the very real irritation of well-meaning people telling you how healthy you look. Just processing the world around you can feel challenging.
In this episode, psychologist Dr. Miriam Franco joins me to discuss how developing a growth mindset can make all the difference in how you experience your MS journey.
We're also sharing a real-world example of how the drastic cuts in federal funding are already impacting MS care.
We'll tell you about the first country in the world to approve Tolebrutinib, a new disease-modifying therapy for nonrelapsing secondary progressive MS. And we'll explain why people are particularly excited about this medication.
We'll share details about the MS Clinical Imaging and Data Resource that's been launched by the International Progressive MS Alliance.
We'll tell you how and where to catch the MS Standup Comedy Benefit next Monday in New York.
And we're reminding you about your opportunity to impact future MS therapies by helping the FDA better understand what living with MS is really like.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Developing a growth mindset :22
How those federal research funding cuts are impacting MS patient care 1:30
United Arab Emirates becomes the first country in the world to approve Tolebrutinib for nonrelapsing secondary progressive MS 5:05
The International Progressive MS Alliance launches an MS Clinical Imaging and Data Resource open to the MS research community 8:32
The MS Standup Comedy Benefit takes place next Monday in New York 10:15
Add your voice and participate in the Shaping Tomorrow Together initiative 11:04
Dr. Miriam Franco discusses what it means to have a growth mindset when you're living with MS 14:50
Share this episode 34:11
Next week's episode 34:31
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Just copy this link & paste it into your text or email: https://realtalkms.com/418
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
VIDEO: Dr. Robert Fox, Principal Investigator in the Phase 3 Clinical Trial for Tolebrutinib and Secondary Progressive MS https://youtu.be/tJQ93qdlXrU?si=S5jREy5ixVcE7ol-
VIDEO: Dr. Jiwon Oh, Principal Investigator in the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS https://youtu.be/zcBmAHRTotA?si=n86KRjB9Xt9sdZMg
The International Progressive MS Alliance Clinical Imaging and Data Resource https://progressivemsalliance.org/ms-clinical-and-imaging-data-resource
ATTEND: MS Stand-Up Comedy Benefit https://msstandup.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 418 Guest: Dr. Miriam Franco
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If you've watched the critically acclaimed series, House of Cards, on Netflix, or the OCD detective series, Monk, on the USA Network, you've already listened to some of five-time Emmy award-winning composer Jeff Beal's work.
This week, Jeff joins me to discuss his journey as an artist and as someone living with MS. We're also sharing all the details about the free event taking place at the Broad Stage in Santa Monica, California, on September 1, when Jeff joins conductor Leonard Slatkin and the Los Angeles Chamber Orchestra for a free concert featuring three of Jeff's works, including a world premiere!
We're also explaining a newly introduced AI-based model of MS that replaces the MS subtypes (relapsing-remitting, secondary progressive, primary progressive) with a continuum that tracks four different states.
We'll tell you about a study that identified specific gut bacteria that may determine whether an individual is susceptible to MS.
And we'll share the details of a study that identified the first genetic marker that can accurately predict how someone will respond to a disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Emmy award-winning composer Jeff Beal discusses his work and his MS journey :22
An AI-based model of MS 1:18
A study identifies specific gut bacteria that may be linked to MS susceptibility 4:49
A study identifies the first genetic marker for accurately predicting an individual's response to MS treatment 6:29
Composer Jeff Beal discusses his journey as an artist and as someone living with MS 9:57
Share this episode 30:36
Coming next week 30:56
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Just copy this link & paste it into your text or email: https://realtalkms.com/417
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
ATTEND: Music + The Body https://realtalkms.com/musicandthebody
An AI-Driven Reclassification of Multiple Sclerosis Progression https://nature.com/articles/s41591-025-03901-6
STUDY: Multiple Sclerosis and Gut Microbiota: Lachnospiraceae From the Ileum of MS Twins Trigger MS-Like Disease in Germfree Transgenic Mice -- An Unbiased Functional Study https://www.pnas.org/doi/10.1073/pnas.2419689122
PARTICIPATE: International MS Microbiome Study https://www.nationalmssociety.org/how-you-can-help/get-involved/participate-in-research-studies/other-studies/international-ms-microbiome
STUDY: HLA-A*03:01 As Predictive Genetic Biomarker for Glatiramer Acetate Treatment Response in Multiple Sclerosis: A Retrospective Cohort Analysis https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(25)00317-2/fulltext
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 417 Guest: Jeff Beal
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Since 2001, clinicians have relied on the McDonald Diagnostic Criteria as the gold standard for diagnosing someone with multiple sclerosis. As science continues to add to our understanding of MS, the McDonald Criteria have been updated in 2005, 2010, 2017, and most recently in 2024.
This latest iteration of the McDonald criteria will be published in September, and today, Dr. Andrew Solomon is giving us a preview of what these changes are, what they mean, and how they're going to improve the process of diagnosing someone with MS. We'll also share results of a study that show MS may actually start 15 years before someone experiences their first MS symptom.
We'll tell you about a study that shows a decline in the number of people with MS who are progressing to secondary progressive MS.
We'll give you all the details so you can participate in the Shaping Tomorrow Together initiative with the FDA.
And we'll remind you that Burgers to Beat MS Day is just two days away!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Updated criteria for diagnosing MS :22
Study results show that MS actually starts many years before the first symptom 1:21
Study shows a decline in the number of people progressing to secondary progressive MS 7:40
A unique opportunity for you to impact future treatments and share your experience of living with MS with the FDA 9:51
We're just 2 days away from Burgers to Beat MS Day! 13:06
Dr. Andrew Solomon shares a preview of the updated McDonald Diagnostic Criteria for MS 14:40
Share this episode 26:20
Coming next week 26:41
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Just copy this link & paste it into your text or email: https://realtalkms.com/416
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
PARTICIPATE: Take the Shaping Tomorrow Together Survey https://s.alchemer.com/s3/Perspectives-on-MS
REGISTER: Attend the virtual Shaping Tomorrow Together meeting with the FDA https://nmss.quorum.us/event/25463
STUDY: Health Care Use Before Multiple Sclerosis Symptom Onset https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2837128
STUDY: Health Care Use Before Multiple Sclerosis Symptom Onset (PLAIN ENGLISH VERSION) https://tremlettsmsresearchexplained.wordpress.com/2025/08/05/healthcare-use-before-multiple-sclerosis-symptom-onset-explained
STUDY: Multiple Sclerosis From Onset to Secondary Progression: A 30-Year Italian Register Study https://researchgate.net/publication/392714813_Multiple_sclerosis_from_onset_to_secondary_progression_a_30-year_Italian_register_study
DONATE: Burgers To Beat MS https://burgerstobeatms.ca
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 416 Guest: Dr. Andrew Solomon
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Living with MS is expensive. Very expensive. It's estimated that the average cost of living with MS is over $88,000 per year. How, in the midst of financial stress and uncertainty, can you formulate a financial plan that takes MS into account?
Paula Cole lives with MS, and she also lives with a lot of financial planning savvy. Paula joins the podcast to share tips and strategies for establishing a personal financial plan for you and your family -- even while you're coping with MS. And Beth Scott, the director of case management at the Patient Advocate Foundation, joins us to explain how you can take advantage of work incentive programs that allow an individual to keep working or even try returning to work while they're receiving Social Security Disability cash benefits.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Ways to earn and hold onto more money when you're living with MS :22
Beth Scott explains how you can benefit from work incentive programs while you're receiving Social Security Disability cash benefits :35
Paula Cole shares tips and strategies for establishing a personal financial plan for you and your family when you're living with MS 12:48
Share this episode 27:47
Next Week: The new criteria for diagnosing MS 28:07
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 415 Guests: Beth Scott, Paula Cole
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Living with MS has always meant living with uncertainty. Left unchecked, that uncertainty can lead to anxiety, which can make your MS symptoms feel worse.
This week, Licensed Clinical Social Worker, Andrea Arzt, joins me to share tips and strategies for finding peace in the midst of uncertainty. You'll also meet the CEO of the MS International Federation, Dr. Lydia Makaroff.
And you'll hear how artist Gordon Keith is combining his art with philanthropy in support of MS Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Finding peace during uncertain times :22
Dr. Lydia Makaroff discusses the work that the MS International Federation is involved in on behalf of the global MS community :58
Gordon Keith discusses his life as an artist and how he's using his art to raise funds for MS Canada 10:43
Licensed Clinical Social Worker, Andrea Arzt, offers strategies for finding peace of mind while facing uncertainty 21:40
Share this episode 32:12
Next Week: It's all about the money! 32:32
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 414 Guests: Dr. Lydia Makaroff, Gordon Keith, and Andrea Arzt
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We're witnessing the early stages of a paradigm shift, as artificial intelligence is beginning to impact virtually every aspect of healthcare, from research to patient care. And there's much, much more to come.
This week, Dr. Brad Willingham, the Director of MS Research at Shepherd Center in Atlanta, joins me to discuss how AI will impact MS patient care. We'll also share the encouraging results from a Phase 2 open-label extension study for Fenebrutinib, an investigational disease-modifying therapy.
We'll tell you about study results that show exercise interventions that follow physical activity guidelines for MS can have a significant impact on MS-related depression.
And we're sharing the results of a study that illustrate what can happen when you delay starting a disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How AI will impact MS patient care :22
Fenebrutinib shows positive results after one-year extension study 1:33
MS-related depression can be significantly eased through exercise intervention that follows physical activity guidelines for MS 3:36
What happens when you delay starting disease-modifying therapy? 8:46
Dr. Brad Willingham discusses how artificial intelligence is impacting all aspects of healthcare 14:29
Share this episode 33:18
Have you downloaded the free RealTalk MS app? 33:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/413
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Safety and Efficacy of Fenebrutinib in Relapsing Multiple Sclerosis (FENopta): A Multicentre, Double-Blind, Randomised, Placebo-Controlled, Phase 2 Trial and Open-Label Extension https://thelancet.com/journals/laneur/article/PIIS1474-4422(25)00174-7/abstract?rss=yes
STUDY: Effects of Meeting Exercise Guidelines on Depression and Anxiety in Multiple Sclerosis: A Systematic Review and Meta-Analysis https://tandfonline.com/doi/full/10.1080/09593985.2025.2518261
Exercise and Physical Activity Recommendations for ALL People with MS https://nationalmssociety.org/news-and-magazine/news/exercise-and-physical-activity-recommend
STUDY: Delayed Access and Adherence are Real-World Challenges That Compromise Effectiveness of Natalizumab in Multiple Sclerosis https://sciencedirect.com/science/article/abs/pii/S2211034825003694
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 413 Guest: Dr. Brad Willingham
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More people over the age of 50 are being diagnosed with MS than ever before. When you consider the other health conditions that often develop as we age, and you add the fact that our immune system changes with age, there's a lot to think about when it comes to diagnosing and treating late-onset MS.
This week, Dr. Jacqueline Nicholas, the System Chief of Neuroimmunology and Multiple Sclerosis at the OhioHealth Multiple Sclerosis Center, joins me to help us better understand late-onset MS. We'll also tell you about research results that could lead to a simple blood test that can predict MS years before someone experiences a single symptom.
You'll learn about an ultra-high resolution brain imaging tool that could open the door to precision neuroscience and revolutionize the treatment of neurological disorders
The FDA wants to talk with people about what living with MS is like, and what they're looking for in future treatments. We'll tell you how and where to register for an informational webinar that will give you all the details about the Shaping Tomorrow Together initiative.
And if you're in or around Northern California, we'll remind you that you can join us this Saturday in Napa Valley at Crush MS!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Understanding Late-Onset MS :22
How a simple blood test may predict MS years before someone experiences any symptoms 1:34
How a new ultra-high resolution brain imaging tool may revolutionize the treatment of neurological disorders 6:40
Are you interested in telling the FDA what it's like living with MS, and what you want in future treatments? 8:53
Are you ready to support MS research while spending the afternoon in a Napa Valley vineyard? Get all the details to attend Crush MS 10:29
Dr. Jacqueline Nicholas discusses what's different and what's the same in treating late-onset MS 12:09
Share this episode 29:26
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Early Identification of Individuals at Risk for Developing Multiple Sclerosis by Quantification of EBNA-1-381-452-Specific Antibody Titers https://nature.com/articles/s41467-025-61751-9
REGISTER: Informational Webinar on the FDA "Shaping Tomorrow Together" Listening Session https://nmss.zoom.us/webinar/register/WN_hHdHhEE3TBmPJ2glcgME0Q#/registration
EVENT: Crush MS https://crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 412 Guest: Dr. Jacqueline Nicholas
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Back in Episode #401, we reported promising results from a Phase 2 clinical trial for vidofludimus calcium and its impact on progressive MS. This therapy is being developed by Immunic Therapeutics, and this week, Jason Tardio, Immunic's President and Chief Operating Officer, joins me to share some of the specifics of that clinical trial.
Jason will also shed light on why Immunic believes that vidofludimus calcium goes beyond merely slowing disability, potentially offering vital neuroprotection for MS patients, making it a potential game-changer. We're also sharing the encouraging results from a study that focused on the efficacy of neural stem cell transplantation as a remyelination therapy.
We'll tell you about a study in the U.K. that measured disability progression among people with MS five years after undergoing autologous hematopoietic stem cell transplantation (aHSCT).
You'll learn about an AI tool that can predict whether someone living with MS is likely to experience progression independent of relapse activity (PIRA) with a high degree of accuracy.
We'll tell you where you can catch the International Progressive MS Alliance webcast featuring a panel of experts discussing the future role of digital tools in MS research.
We'll explain how one of the less publicized aspects of the One Big Beautiful Bill Act will impact future MS care.
And Crush MS is less than two weeks away! We're sharing all the details!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Encouraging results from a clinical trial for progressive MS. :22
How a less-publicized aspect of the One Big Beautiful Bill Act will impact future MS patient care 1:18
A study looked at the efficacy of neural stem cell transplantation as a remyelination therapy 4:31
A study in the U.K. analyzed disability progression among people with MS five years after receiving autologous hematopoietic stem cell therapy (aHSCT) 7:42
Can AI accurately predict who will experience progression independent of relapse activity (PIRA)? 10:45
Don't miss the International Progressive MS Alliance webcast featuring experts discussing the future role of digital tools in MS research 12:40
Are you ready to support MS research while spending the afternoon in a Napa Valley vineyard? Get all the details to attend Crush MS 13:45
Jason Tardio, President and Chief Operating Officer of Immunic Therapeutics, discusses the recent Phase 2 clinical trial for vidofludimus calcium as a therapy for progressive MS 15:03
Share this episode 30:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/411
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
STUDY: Remyelination of Chronic Demyelinated Lesions With Directly Induced Neural Stem Cells https://academic.oup.com/brain/advance-article/doi/10.1093/brain/awaf208/8185601
STUDY: Autologous Haemotopoietic Stem Cell Transplantation in the U.K.: A 20-Year Retrospective Analysis of Activity Haematological Outcomes from the British Society of Blood And Marrow Transplantation and Cellular Therapy https://onlinelibrary.wiley.com/doi/epdf/10.1111/bjh.20199
STUDY: Deep Learning to Predict Progression Independent of Relapse Activity at a First Demyelinating Event https://academic.oup.com/braincomms/article/7/4/fcaf243/8185588
WEBCAST: A Discussion From the International Progressive MS Alliance's Digital Tools Workshop https://msif.org/news/2025/07/08/webcast-digital-tools
EVENT: Crush MS https://crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 411 Guest: Jason Tardio
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Over the past few months, we've shared news about an algorithm that can accurately predict whether someone living with MS will experience worsening symptoms or a relapse in the weeks ahead.
You've heard about a three-quarter-of-a-million-dollar investment by the International Progressive MS Alliance to support the development of an AI-based tool that will predict future disability as well as how someone with MS will respond to different disease-modifying therapies.
Just last week, you learned about a digital tool that can accurately diagnose whether someone has relapsing-remitting MS or progressive MS -- after a five-minute test!
Digital tools are poised to rewrite the rules when it comes to conducting MS research and providing patient care. Welcome to Part Two of our coverage of the Digital Tools Workshop hosted by the International Progressive MS Alliance.
In this week's episode, you'll hear Vanessa Fanning share her perspective as someone living with progressive MS on how digital tools can benefit people with progressive MS, while also highlighting some of the challenges that need to be addressed.
Then, you'll hear neuroimmunologist and data scientist Professor Sergio Baranzini discuss how all the data that digital tools produce will be integrated into MS research and MS care.
Dr. Ruth Ann Marrie recaps the topics covered at the meeting and describes the next steps necessary to integrate digital tools into MS clinical care.
And we'll have to take a moment to share the frightening real-world consequences of last week's decision by President Trump and Congress to cut a trillion dollars from Medicaid.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The real-world impact of the Big, Beautiful Bill on people with MS and any other chronic illness :22
An example of how a digital tool could revolutionize MS patient care 7:41
Vanessa Fanning shares a patient's perspective on how digital tools can benefit people living with progressive MS and reminds us of the challenges that still need to be solved 11:19
Professor Sergio Baranzini discusses managing big data in the clinic 23:15
Dr. Ruth Ann Marrie provides a recap of the workshop and describes the next steps to be taken 31:07
Share this episode 43:21
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Just copy this link & paste it into your text or email: https://realtalkms.com/410
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 410 Guests: Vanessa Fanning, Professor Sergio Baranzini, Dr. Ruth Ann Marrie
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Last week, I was in Philadelphia, attending the Digital Tools Workshop hosted by the International Progressive MS Alliance. Welcome to Part One of our coverage!
As we look around us, it's hard to imagine a single aspect of our lives that hasn't been impacted by the constant and rapid evolution of technology. Just consider the capabilities of the device you're using to listen to this podcast. This workshop highlighted the ways that emerging digital tools will accelerate MS clinical trials and enhance personalized MS care.
In this week's episode, you'll hear Dr. Robert Fox, the Chair of the International Progressive MS Alliance Scientific Steering Committee, and Dr. Tim Coetzee, President and CEO of the National MS Society, discuss some of the ways digital tools can impact MS research and care, as well as some of the issues that need to be addressed to ensure that everyone living with MS can benefit from these tools.
Then, you'll hear the workshop co-chair, Dr. Jennifer Graves, discuss her team's work in developing a digital tool that can accurately determine whether an individual has relapsing-remitting MS or progressive MS -- after a 5-minute test that consists of tapping their fingers and feet!
You'll hear Dr. Anne Helme, the Head of Research and Access at the MS International Federation, explain how digital tools can boost patient-reported outcomes in MS research.
And you'll hear Dr. Stefan Gold share the positive results of his study involving an at-home digital intervention designed to treat depression among people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the International Progressive MS Alliance Digital Tools Workshop :22
Dr. Tim Coetzee and Dr. Robert Fox discuss how digital tools will impact MS research and care :54
Dr. Jennifer Graves talks about her team's work in developing a digital tool, and how MS research is being threatened by drastic cuts in federal research funding 9:56
Dr. Anne Helme discusses how digital tools will boost patient-reported outcomes in MS research 16:26
Dr. Stefan Gold shares the positive results of his study involving an at-home digital intervention designed to treat depression among people with MS. 24:06
Share this episode 37:38
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Just copy this link & paste it into your text or email: https://realtalkms.com/409
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 409 Guests: Dr. Tim Coetzee, Dr. Robert Fox, Dr. Jennifer Graves, Dr. Anne Helme, Dr. Stefan Gold
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Have you experienced those familiar feelings of frustration when the people closest to you don't seem to get your MS? Do you find yourself explaining and re-explaining things to well-meaning friends, co-workers, and even family members?
Kris Inman's wife, Mariah, was diagnosed with MS in 2020, and, since then, Kris has been Mariah's care partner and an active member of the MS community. This week, Kris joins me to talk about overcoming the challenge of helping your friends and family understand what an MS diagnosis means and what living with MS is really like. We're also sharing research results that show that someone's age at the time they experience the first symptoms of MS can determine whether they experience a better physical or mental health-related quality of life.
We'll tell you about a report issued jointly by the MS Society in the UK and the Work Foundation at Lancaster University that details specific challenges people with MS face in the workplace.
We'll give you the details about the National MS Society's Fast Forward investment in Neurogenesis, a biotech company developing a proprietary stem cell therapy designed to treat progressive MS.
And we'll share news about the Portable Neuromodulation Stimulator (PoNS), a device that's used in combination with physical therapy to reduce walking problems for people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The frustration you might feel when some of the people closest to you don't really seem to get your MS. :22
Study results show that the age of MS onset can be predictive of physical and mental health-related quality of life 1:27
A report details challenges faced in the workplace by people living with MS in the UK 4:28
The MS Society's Fast Forward program has made an investment in Neurogenesis, a biotech company developing a proprietary cell therapy designed to treat progressive MS 8:00
Aetna Healthcare has become the third major private insurer to offer reimbursement for the PoNS device 11:00
Kris Inman discusses the finer points of being an MS care partner 14:17
Share this episode 29:13
Have you downloaded the free RealTalk MS app? 29:32
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Just copy this link & paste it into your text or email: https://realtalkms.com/408
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
Act Now! Contact Your Senators About Medicaid and Health Coverage https://nmss.quorum.us/campaign/127768
STUDY: Age of Multiple Sclerosis Symptom Onset Affects Mental and Physical Health-Related Quality of Life in Opposite Directions https://sciencedirect.com/science/article/abs/pii/S2211034825003037
REPORT: No Compromises: Supporting People with MS to Thrive In and Out of Work https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/reports/WF_MSSNoCompromises-SupportingpeoplewithMStothriveinandoutofwork.pdf
Neurogenesis https://neurogenesis-cell.com
The Portable Neuromodulation Stimulator (PoNS) https://ponstherapy.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 408 Guest: Kris Inman
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Getting a good night's sleep is something that benefits everyone. And if you're someone who's living with MS, it's perhaps even more important. But research suggests that more than half the people living with MS experience poor sleep.
Dr. Katie Siengsukon, the Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, returns to the podcast to discuss the importance of good sleep hygiene, along with steps you can take to improve the quality of your sleep. We're also explaining how changes in U.S. public policy will impact people with MS.
We'll tell you about an algorithm developed at Duke University that can predict (with 80-90% accuracy!) whether someone's MS symptoms will worsen in the weeks ahead.
We'll share study results that show MS accelerates biological aging among children and teens with MS. We'll explain why this finding can also be applied to adults with MS, and what it means.
And we'll tell you about the biotech start-up that has succeeded at bringing the brains of people who have passed away back to life, and we'll explain why that can have a major impact on CNS disease research.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Sleep Hygiene and MS :22
How public policy changes in the U.S. will impact people with MS 1:18
What if you knew when an MS symptom was going to worsen? 6:18
Study results show MS accelerates biological aging in children 9:04
How re-animated human brains could accelerate CNS research (And which company is doing it!) 12:00
Dr. Katie Siengsukon discusses the importance of good sleep hygiene for people living with MS 15:37
Share this episode 33:32
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Just copy this link & paste it into your text or email: https://realtalkms.com/407
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
Act Now! Contact Your Senators About Medicaid and Health Coverage https://nmss.quorum.us/campaign/127768
STUDY: Performance of Machine Learning Models for Predicting High-Severity Symptoms in Multiple Sclerosis https://nature.com/articles/s41598-024-63888-x
STUDY: Epigenetic Aging in Pediatric-Onset Multiple Sclerosis https://neurology.org/doi/10.1212/WNL.0000000000213673
Bexorg https://bexorg.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 407 Guest: Dr. Katie Siengsukon
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Welcome to Part Two of our coverage of the Consortium of Multiple Sclerosis Centers annual meeting! In this week's episode, Dr. John DeLuca shares research that has identified an effective behavioral treatment for MS-related fatigue. Dr. Brian Sandroff discusses how MS rehabilitation has evolved and then answers some of your questions about exercise and MS. And Kristine Werner Ozug, a member of the RealTalk MS team and someone who lives with MS, shares her perspective on the sessions and presentations she attended at CMSC. We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Part 2 of our coverage from the 2025 Consortium of MS Centers Annual Meeting :22
Dr. John DeLuca shares his research, which has identified an effective behavioral treatment for MS-related fatigue 1:15
Dr. Brian Sandroff discusses how MS rehabilitation has evolved and answers some of your questions 8:34
Kristine Werner Ozug shares her perspective on the sessions and presentations she attended at CMSC 19:34
Share this episode 31:13
Have you downloaded the free RealTalk MS app? 31:34
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Just copy this link & paste it into your text or email: https://realtalkms.com/406
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 406 Guests: Dr. John DeLuca, Dr. Brian Sandroff, and Kristine Werner Ozug
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Last week in Phoenix, Arizona, the Consortium of Multiple Sclerosis Centers (CMSC) held its annual meeting, and we had a chance to talk with some of the top MS experts in the world. Welcome to Part One of our coverage! First, you'll hear Dr. Kathy Zackowski, the National MS Society's Associate Vice-President of Research, share her overview of the sessions and presentations that especially stood out to her. Then, you'll hear Dr. Stephen Krieger as he expands on one of the most interesting and provocative presentations at the conference. Dr. Krieger headed up a panel of experts that explained how the terms used to describe MS today (relapsing-remitting, secondary progressive, and primary progressive) are no longer adequate and then offered answers to the question, "If MS is one disease, what does that mean for clinical conversations?". We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the 2025 Consortium of MS Centers Annual Meeting :22
Dr. Kathy Zackowski shares an overview of the sessions and presentations that caught her eye 1:08
Dr. Stephen Krieger discusses seeing MS as one disease 17:11
Share this episode 31:58
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 405 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger
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Every five minutes, someone somewhere in the world is diagnosed with MS. But getting that diagnosis can be challenging. And the evidence is clear that early intervention makes a difference. The sooner someone can begin a disease-modifying therapy, the better their outcome is going to be.
World MS Day is May 30th, and this year, World MS Day is focused on eliminating the obstacles that get in the way of a timely and accurate diagnosis.
I thought World MS Day would be the perfect time to invite Meredith O'Brien to join me to discuss her new book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients.
We'll also explain how the drastic cuts to Medicaid funding that were approved by the U.S. House of Representatives will affect hundreds of thousands of people with MS, and how the additional changes made to the Affordable Care Act will leave millions of Americans without health insurance.
We're sharing the results of a study that may have identified how B-cells infected by the Epstein-Barr Virus migrate into the brain. And we'll explain why that could be the activity that triggers MS.
We'll tell you about a study that makes the case for treating pediatric MS with Ocrevus.
And we'll share the results of a study that discovered an association between inflammation-causing molecules and frailty among people with relapsing forms of MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: World MS Day :22
U.S. House of Representatives Vote to Gut Healthcare in America 2:29
Get involved! Become an MS Activist today! 3:38
A research team has demonstrated how EBV-infected B-cells migrate to the brain 4:28
Researchers demonstrate the efficacy of Ocrevus in treating pediatric MS 7:13
Researchers show an association between frailty and an inflammatory molecule 8:57
Meredith O'Brien discusses her new book, Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients 11:05
Share this episode 24:51
Have you downloaded the free RealTalk MS app? 25:12
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/404
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy
World MS Day https://worldmsday.org
Uncomfortably Numb 2: An Anthology for Newly-Diagnosed MS Patients https://amazon.com/Uncomfortably-Numb-Anthology-Newly-Diagnosed-Patients/dp/1954332580/ref=sr_1_1
STUDY: Epstein-Barr Virus Induces Aberrant B Cell Migration and Diapedesis Via FAK-Dependent Chemotaxis Pathways https://nature.com/articles/s41467-025-59813-z
STUDY: Ocrelizumab for Relapsing Pediatric Multiple Sclerosis https://sciencedirect.com/science/article/abs/pii/s2211034825002810
STUDY: Association Between Frailty and Inflammatory Cytokines in Patients with Multiple Sclerosis: A Case-Control Study https://sciencedirect.com/science/article/abs/pii/s1043466625000924
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 404 Guest: Meredith O'Brien
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Last week, the National Multiple Sclerosis Society and the European Committee for Treatment and Research in Multiple Sclerosis convened a meeting in Dublin, Ireland, to dive deeper into what a new framework for describing MS might look like. There's still a tremendous amount of work to be done here. But, considering that whatever language is eventually adopted will affect every person living with MS, I want to keep you fully informed on this important work. So I'm devoting this entire episode of the podcast to sharing conversations I had with three of the attendees at the meeting in Dublin. First, you'll hear from Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research. Then, you'll hear from Dr. Daniel Ontaneda, a neurologist specializing in MS at the Cleveland Clinic, and, finally, you'll hear from Kathy Smith, who's lived with MS for the past 20 years. As you listen to these conversations, I think you'll hear three slightly different perspectives, but you'll also hear some of the broad concepts and ideas around which there was a high level of agreement at our meeting. We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A meeting to discuss moving to a biologically based description of MS :22
Dr. Bruce Bebo discusses how a new framework for describing MS could impact MS research and people living with MS 3:45
Dr. Daniel Ontaneda describes some of the shortcomings of the current MS course descriptors and discusses how a new framework for describing MS could impact people living with MS 17:34
Kathy Smith explains how current MS course descriptors fail to fully capture her experience as someone living with MS, and explains how new course descriptors could benefit people living with MS 26:24
What's next in the work to develop new course descriptors for MS 35:20
Share this episode 35:44
Have you downloaded the free RealTalk MS app? 36:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/403
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 403 Guests: Dr. Bruce Bebo, Dr. Daniel Ontaneda, Kathy Smith
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If you're living with MS, you might experience days when it feels like you're losing your sense of who you are, as your sense of self gets redefined by your symptoms. Reasserting your personal style can be a powerful way to rediscover joy in who you are while reclaiming your identity.
Jeri Zink Denz lives with MS and works in the luxury fashion industry. She's always been passionate about fashion and personal style, and Jeri joins me to discuss how you can find and define your personal style, despite the challenges that MS may present.
We'll also explain the hidden outcome of the massive agency layoffs and drastic cuts in federal funding for healthcare research, and this is the outcome that can affect research for decades to come.
We're sharing the results of a study that may have identified a biomarker for rapid MS progression.
We'll tell you about the game-changing artificial intelligence project that received a $750,000 investment from the International Progressive MS Alliance.
And you'll find out how and where you can register for the upcoming Hispanic/Latinx MS Experience Summit.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Reasserting your personal style can be a powerful way to rediscover joy in who you are in spite of the challenges that MS may present. :22
Layoffs + funding cuts = brain drain 1:08
Have researchers found a biomarker for rapid MS progression? 4:51
The International Progressive MS Alliance has invested $750,000 in what could be a game-changing AI project 9:09
The National MS Society's Hispanic/Latinx MS Experience Summit is just 8 days away 10:59
Jeri Zink Denz discusses why it's especially important (and even therapeutic!) to assert your personal style when you're living with MS 12:22
Share this episode 29:31
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Just copy this link & paste it into your text or email: https://realtalkms.com/402
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
STUDY: Broad Rim Lesions are a New Pathological and Imaging Biomarker for Rapid Disease Progression in Multiple Sclerosis https://nature.com/articles/s41591-025-03625-7
International Progressive MS Alliance https://progressivemsalliance.org
Hispanic/Latinx MS Experience Summit Info & Registration https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 402 Guest: Jeri Zink Denz
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Most people living with MS don't see their neurologist often. For many, it might be only once or twice a year. A lot of important things take place during that appointment. Symptoms are assessed. Decisions about disease-modifying therapies are made or, sometimes, changed. Questions get asked and, hopefully, answered.
Dr. Barbara Giesser returns to the podcast, this time, to review the things that should be discussed and followed up on at your appointment with your neurologist or MS specialist.
We're also sharing some good news about MS research funding from the National MS Society and the International Progressive MS Alliance.
We'll tell you how you can catch the replay of the International Progressive MS Alliance's webcast focused on putting people with MS at the center of MS research.
We're sharing the encouraging outcome of the Phase 2 clinical trial for vidofludimus calcium and progressive MS.
We'll tell you how you or a family member can participate in the GEMS study.
And we'll tell you about a new AI tool that can accurately diagnose a patient's transition from relapsing-remitting MS to secondary progressive MS, often before a clinician can!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: What (should) happen during your appointment with your neurologist :22
National MS Society invests $18.1 million in new research 1:04
International Progressive MS Alliance funds 3 clinical trial development projects 3:53
Catch the replay of the International Progressive MS Alliance webcast focused on putting people with MS at the center of research 6:56
Immunic Therapeutics announces positive results from the Phase 2 clinical trial evaluating vidofludimus calcium for progressive MS 7:45
You or a family member may qualify to participate in the GEMS study 10:00
AI tool can accurately diagnose the transition from relapsing-remitting MS to secondary progressive MS 12:01
Dr. Barbara Giesser discusses the kinds of conversations you should be having during your appointment with your neurologist 16:49
Share this episode 30:38
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
National MS Society Commits $18.1 Million for Research (Projects Being Funded) https://cdn.sanity.io/files/y936aps5/production/a788b2e3d8409173a4de417fcf3bebcfbddddc41.pdf
International Progressive MS Alliance https://progressivemsalliance.org
International Progressive MS Alliance Webcast: Putting People with MS at the Center of Research https://youtube.com/watch?v=uacSJ7ZxuRM
Participate in MS Research: The GEMS Study https://recruit.cumc.columbia.edu/studyinfopage/1419
GEMS Study Contact: Juliana Oyegunle Email: gems_neuro@cumc.columbia.edu Phone: (212) 305-2434
STUDY: Conformal Prediction Enables Disease Course Prediction And Allows Individualized Diagnostic Uncertainty in Multiple Sclerosis https://www.nature.com/articles/s41746-025-01616-z
Multiple Sclerosis Progression Tracker https://msp-tracker.serve.scilifelab.se/
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 401 Guests: Dr. Barbara Giesser
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Welcome to the 400th episode of RealTalk MS! Over the past nearly eight years, it's been my absolute honor to bring you insights from leading experts, researchers, advocates, and, perhaps most importantly, from people living with MS themselves. And we have no intention of stopping here! We're excited to continue bringing you the information and conversations that matter most to the MS community.
In this episode of the podcast, Dr. Tim Coetzee, President and CEO of the National MS Society, looks back at a significant milestone that took place eighty years ago. Tim also shares his detailed vision of the future for people living with MS, and discusses some of the cutting-edge MS research that he's most excited about.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Welcome to episode 400! :18
Dr. Tim Coetzee, President and CEO of the National MS Society, looks back at the past, shares his vision of the future, and discusses the MS research that he's most excited about 2:32
Share this episode 30:31
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Just copy this link & paste it into your text or email: https://realtalkms.com/400
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 400 Guests: Dr. Tim Coetzee
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Research shows that spirituality can benefit mental health and improve overall well-being. And it can play a meaningful role in helping people cope with life’s challenges, like living with MS. This week, Dr. Mana Ali Carter, a rehabilitation psychologist at MedStar National Rehabilitation Hospital in Washington D.C., joins me to discuss the positive effects that spirituality can have on the mind and body, and how it's been shown to make a difference for people living with MS.
We're also sharing encouraging initial reports from a Phase 1 clinical trial for KYV-101, Kyverna's investigational CAR-T therapy for MS.
We'll tell you about a positive report on two years of data from a Phase 2 clinical trial extension study for Frexalimab, a novel investigational disease-modifying therapy from Sanofi.
We'll explain how the decision to discontinue federal matching funds for designated state health programs will have a direct impact on some people living with MS.
And we'll tell you how you can register for the National MS Society's webinar in support of restoring federal funding for the MS Research Program.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How spirituality can make a difference if you're living with MS :22
Initial reports from a Phase 1 clinical trial for a CAR-T therapy are encouraging 1:15
Two years of data from a Phase 2 extension study of Frexalimab are positive 3:07
The federal government will no longer provide matching funds for designated state health programs 5:47
The National MS Society is hosting a virtual event to support restoring federal funding for the MS Research Program 8:38
Dr. Mana Ali Carter explains how spirituality can make a difference in your life if you're living with MS 11:27
Share this episode 30:40
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Just copy this link & paste it into your text or email: https://realtalkms.com/399
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
Participate in a Sanofi Clinical Trial https://sanofistudies.com
Register for a Virtual Event: Restore the MS Research Program https://nmss.quorum.us/event/23043
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 399 Guests: Dr. Mana Ali Carter
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Last week, at the American Academy of Neurology annual meeting, Dr. Amit Bar-Or received the John Dystel Prize for Multiple Sclerosis Research for his multiple achievements that have advanced our knowledge of neuroimmunology, precision medicine, and biomarkers in MS. We talked with Dr. Bar-Or about how some of the latest discoveries in MS research would impact patient care.
Tolebrutinib, an investigational disease-modifying therapy, is currently making its way through the FDA's regulatory process. Last week, the results of the Phase 3 clinical trials for Tolebrutinib were published, and we're sharing the details.
We'll also tell you about MindGlide, an AI-powered tool for analyzing MRI scans that will significantly reduce MRI exam times.
We're talking about the results of the Phase 3 clinical trial for high-dose Ocrevus.
And we'll tell you about a cell therapy that doesn't use stem cells that successfully repaired myelin in the mouse model of MS -- twice!
We have a lot to talk about! Are you ready for RealTalk MS??!
Congratulations to Dr. Stephen Hauser and Dr. Alberto Ascherio :22
This Week: The impact of breakthrough MS research on MS care 2:17
Results of the phase 3 clinical trials for Tolebrutinib have been published 3:07
An AI-powered tool for analyzing MRI scans will significantly reduce MRI exam times for patients 4:21
Results of the phase 3 clinical trial for high-dose Ocrevus 8:13
A cell therapy that doesn't use stem cells has successfully repaired myelin in the mouse model of MS -- twice! 10:14
Dystel Prize winner Dr. Amit Bar-Or discusses how some of the latest discoveries in MS research will impact MS care 12:39
Share this episode 22:36
Have you downloaded the free RealTalk MS app? 22:56
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Just copy this link & paste it into your text or email: https://realtalkms.com/397
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
RealTalk MS Episode 310: The Face Laughs While The Brain Cries: The Education of a Doctor with Dr. Stephen Hauser https://realtalkms.com/310
RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh https://realtalkms.com/ectrims244
VIDEO: RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh https://youtu.be/zcBmAHRTotA
VIDEO: RealTalk MS ECTRIMS Extra: Results from the Phase 3 Clinical Trial for Tolebrutinib and Nonrelapsing Secondary Progressive MS with Dr. Robert Fox https://youtu.be/tJQ93qdlXrU
STUDY: Tolebrutinib Versus Teriflunomide in Relapsing Multiple Sclerosis https://nejm.org/doi/full/10.1056/NEJMoa2415985
STUDY: Tolebrutinib in Nonrelapsing Secondary Progressive Multiple Sclerosis https://nejm.org/doi/full/10.1056/NEJMoa2415988
Enabling New Insights from Old Scans By Repurposing Clinical MRI Archives for Multiple Sclerosis Research https://www.nature.com/articles/s41467-025-58274-8
Fibroblast Technology https://fibrobiologics.com/technology/#cnsms
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 398 Guests: Dr. Amit Bar-Or
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For many people, it can be difficult to talk about the feelings of loss that can accompany MS. For some, it's the loss of the way they imagined their life would turn out. For others, it's the more specific loss of function. Perhaps the loss of their mobility. Or a decline in their cognitive skills. It's painful to imagine any of these scenarios, let alone experience them in real life.
The human response to loss is grief. And grieving itself can affect your physical, emotional, and cognitive health. Joining me today to discuss how grieving can affect you, along with ways to best manage grief, is Dr. Mary-Frances O'Connor.
Dr. O'Connor is a professor of psychology at the University of Arizona, where she directs the Grief, Loss, and Social Stress Lab, investigating the effects of grief on the brain and the body. Dr. O'Connor also lives with MS, and the title of her new book is The Grieving Body: How the Stress of Loss Can Be an Opportunity for Healing.
We'll also share the results of a study on MS fatigue in Finland.
We'll tell you about a study that focused on sexual dysfunction among women living with MS in Iran.
You'll learn what a research team discovered when they connected sick days from work with the prodromal phase of MS.
And we're sharing a new resource from the MS International Federation that will help you assess which wellness practices and complementary therapies may be beneficial for you.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing the grief that comes from living with MS :22
Results from a Finnish study adds further evidence to what we know about MS fatigue 1:36
Results of a study that focused on sexual dysfunction among women living with MS in Iran 3:13
Can job-related sick days help researchers better understand the prodromal phase of MS? 5:48
The MS International Federation has produced a very worthwhile guide to wellness practices and complementary therapies for people with MS 10:49
Dr. Mary-Frances O'Connor discusses managing the grief that accompanies being diagnosed with MS 12:42
Share this episode 34:02
Have you downloaded the free RealTalk MS app? 34:22
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Just copy this link & paste it into your text or email: https://realtalkms.com/397
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
STUDY: Evaluation of Patient-Perceived Fatigue in Multiple Sclerosis Using the Finnish MS Registry https://journals.sagepub.com/doi/10.1177/20552173251325098
STUDY: The Prevalence of Sexual Dysfunction and Its Contributors Among the Women with Multiple Sclerosis https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-025-03653-y
STUDY: The Prodromal Phase of Multiple Sclerosis: Evidence from Sickness Absence Patterns Before Disease Onset -- A Matched Cohort Study https://jnnp.bmj.com/content/early/2025/03/25/jnnp-2024-335279.full
STUDY (PLAIN ENGLISH VERSION): The Prodromal Phase of Multiple Sclerosis: Evidence from Sickness Absence Patterns Before Disease Onset -- A Matched Cohort Study https://tremlettsmsresearchexplained.wordpress.com/2025/03/26/the-prodromal-phase-of-multiple-sclerosis-evidence-from-sickness-absence-patterns-before-disease-onset-a-matched-cohort-study-explained
DOWNLOAD: Wellness Practices and Complementary Therapies in MS https://msif.org/resources/wellness-practices-and-complementary-therapies/
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 397 Guests: Dr. Mary-Frances O'Connor
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Managing MS means staying focused not only on your MS but also on your overall health. That includes getting routine health screenings to stay ahead of potential complications. Recent research has shown that, compared to healthy people, people with MS are more likely to develop some cancers.
Clinician-scientist Dr. Ruth Ann Marrie joins me to discuss which cancers pose a greater risk to someone with MS, why you need to make those appointments for cancer screenings, where you can find low-cost or no-cost cancer screenings, and things you can do to further minimize your risk of developing cancer.
Dr. Marrie is a professor of medicine and the Multiple Sclerosis Clinical Research Chair at Dalhousie University in Canada. She's a past recipient of the Barancik Prize for Innovation in MS Research and is recognized as one of the world's leading MS experts.
We'll also explain how and why we're going to be discussing the impact of those devastating federal budget cuts and mass layoffs in the federal agencies responsible for healthcare and MS research on this podcast.
We'll tell you about the FDA's decision to grant priority review to Tolebrutinib. (We'll also explain why Tolebrutinib isn't just another DMT. We're even sharing the projected date when the FDA will make its approval decision!)
And you'll learn what happened when a research team set out to identify the diversity-related characteristics of the MS population in Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
How we'll be talking about the impact of public policy on people affected by MS (and why we must) :22
Hear what's on the minds of some of the attendees at last week's National MS Society Public Policy Conference 3:55
This Week: The importance of cancer screenings for people with MS 12:52
Tolebrutinib, an investigative DMT from Sanofi, is granted priority review by the FDA 13:44
What happened when researchers set out to identify the diversity-related characteristics of the MS population in Canada 17:56
Dr. Ruth Ann Marrie discusses the importance of cancer screenings for people living with MS 20:02
Share this episode 30:03
Have you downloaded the free RealTalk MS app? 30:23
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/396
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
VIDEO: Tolebrutinib and Non-Relapsing Secondary Progressive MS with Dr. Robert Fox https://realtalkms.com/tolebrutinib1
VIDEO: Tolebrutinib and Relapsing-Remitting MS with Dr. Jiwon Oh https://realtalkms.com/tolebrutinib2
VIDEO: RealTalk MS 2025 ACTRIMS Forum YouTube Playlist https://realtalkms.com/actrims
STUDY: Characterizing the Diversity of the Multiple Sclerosis Population in Canada: A Scoping Review https://journals.sagepub.com/doi/10.1177/20552173251321814
STUDY (PLAIN ENGLISH VERSION): Characterizing the Diversity of the Multiple Sclerosis Population in Canada: A Scoping Review https://tremlettsmsresearchexplained.wordpress.com/2025/03/20/characterizing-the-diversity-of-the-multiple-sclerosis-population-in-canada-a-scoping-review-explained
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 396 Guests: Dr. Ruth Ann Marrie
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When you look at a list of the typical symptoms associated with perimenopause, you'd think you were looking at a list of MS symptoms. And, for women living with MS, that's where the confusion begins. With an estimated 30% of the current MS population now in peri- or post-menopause, researchers are beginning to focus on how menopause and MS interact and the best ways to treat symptoms.
Dr. Riley Bove, a neurologist and founding director of the Sex and Gender-Enriched (SAGE) Neurology Program at the University of California San Francisco, joins me to talk about the things you need to know when you're managing MS while you're managing menopause.
We'll also tell you about this year's winner of the John Dystel Prize for Multiple Sclerosis Research.
We'll share a deeply personal poem written by a friend who's been living with MS since 1988.
And we'll tell you about the results of a study that should be a reminder of the importance of starting disease-modifying therapy and the value of early intervention.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're in Washington, D.C., at the National MS Society's Public Policy Conference :22
Dr. Amit-Bar-Or is the winner of the 2025 John Dystel Prize for Multiple Sclerosis Research 2:26
Magician Wayne Dobson's poem 7:07
STUDY: Cognitive impairment is prevalent among people living with untreated MS 10:23
Dr. Riley Bove talks about the things you need to know when you're managing MS while you're managing perimenopause and menopause 14:18
Share this episode 32:56
Have you downloaded the free RealTalk MS app? 33:16
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Just copy this link & paste it into your text or email: https://realtalkms.com/395
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
RealTalk MS 2025 ACTRIMS Forum YouTube Playlist https://www.youtube.com/playlist?list=PLATxgj1uHpxNEoc2-9_7-Wzmr96B7wt2C
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 395 Guests: Dr. Riley Bove
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Next week, a couple of hundred MS activists will gather in Washington, D.C. for the National MS Society's Public Policy Conference. As we're seeing devastating cuts in funding for MS research, layoffs in every major governmental agency that impacts our healthcare, including the National Institutes of Health, the FDA, CDC, Health and Human Services, and the Department of Veterans Affairs, and even Medicaid funding is at serious risk, advocacy has never been more important than it is right now.
I'm devoting this entire episode to a conversation with Steffany Stern, the National MS Society's Vice President for Advocacy, who joins me to assess the current legislative climate in Washington, D.C., and give us a preview of the issues that will take center stage at this year's Public Policy Conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Is there anything more urgent and important to discuss than advocacy? :22
Steffany Stern discusses the current legislative climate in our nation's capitol, and gives us a sneak peek at next week's National MS Society Public Policy Conference 2:16
Share this episode 25:40
Have you downloaded the free RealTalk MS app? 26:08
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/394
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org
RealTalk MS 2025 ACTRIMS Forum YouTube Playlist https://www.youtube.com/playlist?list=PLATxgj1uHpxNEoc2-9_7-Wzmr96B7wt2C
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 394 Guests: Steffany Stern
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Kristine Werner Ozug lives with MS and, full disclosure, she's a member of the RealTalk MS team. After the ACTRIMS Forum, Kristine shared her impressions of the conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims08
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Kristine Werner Ozug
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Emanuelle Waubant is a neurologist who specializes in treating patients with MS, and she is the Director of the UCSF Regional Pediatric Multiple Sclerosis Center.
At the ACTRIMS Forum, we talked with Dr. Waubant about advances in pediatric MS treatment and care, and the importance of the International Women in Multiple Sclerosis organization.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims07
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Emanuelle Waubant
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Mikael Simons is a neurologist and researcher at Technical University Munich and the Centre for Neurodegenerative Diseases in Munich, Germany, and he's this year's recipient of the Barancik Prize for Innovation in MS Research.
At the ACTRIMS Forum, we talked with Dr. Simons about his research in myelin repair.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims06
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Mikael Simons
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Daniel Reich is a neurologist and neuroradiologist. He is the Director of the Translational Neuroradiology Section at the NIH National Institute of Neurological Disorders and Stroke. In his clinical practice, Dr. Reich cares for people living with MS and other neurological diseases, and he leads several clinical trials focused on multiple sclerosis.
At the ACTRIMS Forum, we talked with Dr. Reich about myelin repair, how improvements in imaging have impacted diagnosing and treating MS, and what he sees in MS research today that has him excited.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims05
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Daniel Reich
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Christina Azevedo is an Associate Professor of Neurology at the University of Southern California.
At the ACTRIMS Forum, we talked with Dr. Azevedo about updates to the McDonald criteria, which are the criteria used to diagnose MS, and the benefits of getting an early MS diagnosis.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims04
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Christina Azevedo
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine, focusing on the diagnosis and management of MS. He is the principal investigator on several clinical trials and oversees research projects focused on creating new anti-inflammatory and neuroprotective therapies for MS.
At the ACTRIMS Forum, we talked with Dr. Calabresi about updates to the criteria used to diagnose MS, the importance and benefit of identifying biomarkers for MS, and what he sees in MS research today that has him excited.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims03
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Peter Calabresi
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It's MS Awareness Week, and the National MS Society is asking everyone in the MS community to tell MS exactly what they think of it. We're kicking off MS Awareness Week by introducing you to two difference-makers in the MS community who have each found their own way of talking back to MS.
Case Jernigan is an experimental animator, narrative gamemaker, and educator. His short animated documentary, Noggin, is currently making the rounds of the film festival circuit, raising awareness of how Case reacted and responded to his early symptoms of MS.
Suni Conway is an MS activist who has lived with MS for nearly 13 years. Suni uses her social media platform to raise awareness about MS diagnosis and treatment, and the need for healthcare reform.
Be sure to follow RealTalk MS all week long, as we celebrate MS Awareness Week with bonus episodes featuring conversations with leading MS experts from the 2025 ACTRIMS Forum!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's MS Awareness Week! :22
Case Jernigan explains how his short animated documentary, Noggin, reflects the early parts of his MS journey 1:02
Suni Conway discusses the motivation behind her social media efforts and why advocacy is so important 12:05
Share this episode 35:52
Don't miss RealTalk MS bonus episodes all week long during MS Awareness Week! 36:12
Have you downloaded the free RealTalk MS app? 36:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/393
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
VIDEO: Noggin https://vimeo.com/casejernigan/noggin
Suni Conway on Instagram https://www.instagram.com/sunisideupproject
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 393 Guests: Case Jernigan and Suni Conway
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Nara Michaelson is a Multiple Sclerosis Fellow at Harvard's Massachusetts General Hospital. We first talked with Dr. Michaelson last summer when her article, The Unraveling, was published in the journal, Neurology.
At the ACTRIMS Forum, we talked with Dr. Michaelson about how she uses arts therapy with her patients, and how lessons learned studying piano when she was 8 years old continue to serve her today in her work as an MS specialist.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims02
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Darin Okuda
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Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
Dr. Darin Okuda is the Director of the Multiple Sclerosis and Neuroimmunology Imaging Program, the Director of Neuroinnovation, and the Deputy Director of the Multiple Sclerosis Program and Clinical Center for Multiple Sclerosis at University of Texas Southwestern Medical Center.
At the ACTRIMS Forum, we talked with Dr. Okuda about the impact of artificial intelligence on MS care, how to go about preventing MS, and a frightening case study of what went wrong with an MS patient's generic disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/actrims01
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode Guest: Dr. Darin Okuda
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Last week, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents arrived in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum.
I'm kicking off our coverage of this important conference by sharing two of the conversations I had at ACTRIMS 2025.
First, I talked with Dr. Lilyana Amezcua about the Alliance for Research in Hispanic Multiple Sclerosis, and her just-published paper, The Impact of Person-Centered Social Determinants and Neighborhood Deprivation Associated with Disability in Hispanic People with Multiple Sclerosis.
I also talked with Dr. John Corboy about aging and MS, and what he learned as the Principal Investigator of DISCO-MS, the largest clinical trial to focus on the question of whether it makes sense for someone over the age of 55 or 60 to discontinue their disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the 2025 ACTRIMS Forum :22
Dr. Lilyana Amezcua discusses the Alliance For Research in Hispanic Multiple Sclerosis, and her paper focused on the impact of person-centered social determinants and neighborhood deprivation associated with disability in Hispanic people with multiple sclerosis 2:06
Dr. John Corboy discusses aging and MS, and what he learned as the Principal Investigator of DISCO-MS, the largest clinical trial to focus on the question of whether it makes sense for someone over the age of 55 or 60 to discontinue their disease-modifying therapy. 12:05
Share this episode 21:37
Next Week: Look for special episodes of the podcast with lots more interviews from the ACTRIMS Forum, featuring some of the leading MS experts in the world 21:57
Have you downloaded the free RealTalk MS app? 22:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/392
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
RESEARCH PARTICIPATION OPPORTUNITY: The Global PROMS Initiative eHealth Survey https://proms-initiative.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 392 Guests: Dr. Lilyana Amezcua and Dr. John Corboy
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MS can limit your ability to get around and do the things you like to do. And when that happens, the right mobility device can be a game-changer when it comes to staying safe, staying active, and improving your quality of life.
This week, Dr. Evan Cohen joins me to discuss how to know when it's time to consider a mobility device, and how to choose the right mobility device for you.
We’re also presenting findings from two separate studies that shed significant light on how the gut microbiome interacts with the brain and how its composition varies among individuals with MS.
We'll tell you what happened when a research team gave a multiple-choice "test" measuring MS expertise to neurologists and neurology residents and then gave the same test to the leading artificial intelligence platforms.
And we'll share an opportunity for you to participate in MS research by taking the PROMS Initiative's eHealth survey.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Choosing the right mobility device :22
Differences in the gut microbiome of people with MS 1:28
Evidence shows the vagus nerve is the connection between the gut and the brain 3:53
Who won the "MS expertise" showdown between neurologists and AI? 6:18
Your opportunity to participate in MS research by taking the PROMS initiative survey 8:31
Dr. Evan Cohen shares everything you need to know about choosing a mobility device 10:27
Share this episode 30:57
Have you downloaded the free RealTalk MS app? 31:15
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/391
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
STUDY: Alterations in Gut Microbiome-Host Relationships After Immune Perturbation in Patients with Multiple Sclerosis https://neurology.org/doi/10.1212/NXI.0000000000200355
STUDY: Select Microbial Metabolites In the Small Intestinal Lumen Regulates Vagal Activity Via Receptor-Mediated Signaling https://cell.com/iscience/fulltext/S2589-0042(24)02926-2
STUDY: Artificial Intelligence Versus Neurologists: A Comparative Study on Multiple Sclerosis Expertise https://sciencedirect.com/science/article/abs/pii/S030384672500068X
RESEARCH PARTICIPATION OPPORTUNITY: The Global PROMS Initiative eHealth Survey https://proms-initiative.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 391 Guest: Dr. Evan Cohen
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This special episode of RealTalk MS is sponsored by Sanofi. By now, you may have come across the term smoldering MS and wondered what it means. An international panel of MS experts has published a consensus statement on the definition, biology, and clinical implications of smoldering MS. Joining me is the lead author of that paper, Dr. Antonio Scalfari.
Dr. Antonio Scalfari has a research background in multiple sclerosis and neuro-inflammatory conditions. From 2003 to 2006, he was a clinical fellow in the neurology department of Oxford University. In 2011, Dr. Scalfari obtained his PhD in neuro-epidemiology at Imperial College London, where he was then a post-doctorate research fellow from 2011 to 2013.
Since 2006, Dr. Scalfari has been working at the London North West Healthcare NHS Trust, and in 2013, he started working at the multiple sclerosis unit at Imperial College Healthcare NHS Trust. In 2017, Dr. Scalfari was appointed as a substantive consultant neurologist. Along with other consultants, he manages the multiple sclerosis and neuro-inflammatory diseases service at Charing Cross and St Mary's hospitals and is a general neurologist at London North West Healthcare NHS Trust.
Sanofi convened the meetings and paid for medical writing assistance, but the authors worked independently to develop and draft the consensus statement. While Dr. Scalfari has been compensated by Sanofi, his views and opinions are his own and do not necessarily reflect those of Sanofi.
More than half of the people living with MS live with pain. And, too often, the distraction and discomfort of MS-related pain can stop you from fully engaging in every aspect of your life.
Dr. Bianca Weinstock-Guttman joins me to discuss treatment options for managing MS pain. Dr. Weinstock-Guttman is a neurologist and professor of neurology at the Jacobs School of Medicine and Biomedical Sciences at the University of Buffalo, where she also serves as the Director of the Jacobs Multiple Sclerosis Center for Treatment and Research.
We're also taking a moment to respond to all your questions and concerns about the state of healthcare policy and administration in the U.S. federal government.
MS experts in Australia and New Zealand have released recommendations for MS care in those countries. We're sharing all the details.
We'll tell you about the National MS Society's initiative designed to improve access to MS care in rural communities in the U.S.
And we'll share the details of a study that shows that, together, obesity and smoking worsen MS symptoms faster.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing MS pain :22
Responding to your concerns about healthcare in the U.S. :57
Recommendations published for treating MS in Australia and New Zealand 7:16
National MS Society has launched an initiative designed to improve access to MS care in rural communities in the United States 9:09
Together, smoking and obesity worsen MS physical and cognitive symptoms faster 12:46
Dr. Bianca Weinstock-Guttman shares treatment options for managing MS pain 14:14
Share this episode 29:19
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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Consensus Recommendations on Multiple Sclerosis Management in Australia and New Zealand https://mja.com.au/journal/2025/222/7/consensus-recommendations-multiple-sclerosis-management-australia-and-new
STUDY: Smoking and Obesity Interact to Adversely Affect Disease Progression and Cognitive Performance in Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1111/ene.70058
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RealTalk MS Episode 390 Guest: Dr. Bianca Weinstock-Guttman
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Living your best life with MS means learning to overcome the stigma of having a disability, successfully navigating social relationships, and learning how to ask for and accept help.
Joining me to share their perspectives and their experiences in overcoming some of these social obstacles are Denise Schnieders, who was diagnosed with MS just about a year ago, and Fox Rigney, who's been living with MS since 2012.
We're also applauding a forward-thinking caregiver leave benefit that's just been announced by EMD Serono.
We're sharing results of a study that show MS lesions dynamically change over time and explains why those changes aren't apparent on MRI scans.
We'll tell you about an AI-powered drug repurposing platform that has identified a potential treatment for MS.
We'll also share an announcement from the CEO of Google's artificial intelligence company, DeepMind, that we will see pharmaceutical drugs developed by artificial intelligence in clinical trials by the end of this year.
And we'll share the details of a Phase 2 clinical trial that you may qualify to participate in.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Overcoming the stigma of disability, navigating social situations, and how to ask for and receive help :22
EMD Serono implements caregiver leave benefit (And we're applauding!) 1:04
Imaging study reveals that T-2 lesions expand and contract "invisibly" 3:16
Has an AI drug repurposing platform discovered a new treatment for MS? 6:22
We will see pharmaceutical drugs developed by artificial intelligence in clinical trials this year 8:06
Your opportunity to participate in MS resesarch 10:54
Denise Schnieders and Fox Rigney discuss overcoming the stigma of MS 14:04
Share this episode 32:46
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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Dynamic Expansion and Contraction of Multiple Sclerosis T-2 Weighted Hyperintense Lesions Are Present Below the Threshold of Visual Perception https://www.ajnr.org/content/early/2025/01/16/ajnr.A8453
Contact Information for Obexelimab Phase 2 Clinical Trial Phone: (833) 269-4696 Email: clinicaltrialsinfo@zenasbio.com
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RealTalk MS Episode 389 Guests: Denise Schnieders and Fox Rigney
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When we talk about myelin damage, most of us typically think of the brain. After all, that myelin is located in your central nervous system. But the inflammation that causes myelin damage may be triggered by activity that's taking place well south of your central nervous system, in your gut microbiome, the colony of trillions of bacteria and microorganisms that live in your intestines.
Dr. Ashutosh Mangalam joins me to help us understand what this gut-brain connection is all about, how that connection impacts MS, and what you can do to change the makeup of your gut microbiome. Dr. Mangalam is an Associate Professor of Pathology at the Carver College of Medicine at the University of Iowa, where his research is focused on studying the gut microbiome and the immune system in multiple sclerosis.
We're also talking about the newly published guidance from the European Committee for Treatment and Research in MS and the European Society for Blood and Marrow Transplantation, recommending autologous hematopoietic stem cell transplantation (aHSCT) for treating some cases of relapsing-remitting MS.
We'll tell you about an experimental drug that may resolve MS-related vision issues through remyelination.
And we'll introduce you to this year's winner of the Barancik Prize for Innovation in MS Research.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The gut-brain connection (and what it means if you're liviing with MS) :22
The European Committee for Treatment and Research in MS and the European Society for Blood and Marrow Transplantation issue a recommendation for stem cell therapy to treat relapsing-remitting MS 1:35
Researchers develop a drug that may resolve MS-related vision issues through remyelination 4:44
National MS Society names this year's winner of the Barancik Prize for Innovation in MS Research 7:23
Dr. Ashutosh Mangalam explains how (and why) the brain-gut connection impacts MS 11:14
Share this episode 35:38
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Autologous Hematopoietic Stem Cell Transplantation for Treatment of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorder -- Recommendations from ECTRIMS and EBMT https://www.nature.com/articles/s41582-024-01050-x
National MS Society Releases Recommendations for aHSCT-Bone Marrow Transplant for MS https://nationalmssociety.org/news-and-magazine/news/national-ms-society-releases-recommendations
STUDY: Incomplete Remyelination Via Therapeutically Enhanced Oligodendrogenesis Is Sufficient to Recover Visual Cortical Functionhttps://www.nature.com/articles/s41467-025-56092-6
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RealTalk MS Episode 388 Guest: Dr. Ashutosh Mangalam
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The TEAAMS study examines the effects of a remotely delivered, racially-tailored exercise training program among African-Americans with MS, who are living in low-income areas of the Southeastern United States, which is a part of the country that doesn't have many primary care or MS clinics that provide full exercise and rehabilitation services for patients with MS. Ashli, who lives with MS and has completed the TEAAMS program, and Victoria, a behavioral coach who has worked with several study participants, join me this week to share their experiences in the study.
We're also talking about a new Phase1/2 clinical trial for another investigative CAR-T therapy. (And we'll explain what a Phase 1/2 trial is)
We'll tell you about TG Therapeutics' plans for Briumvi, as well as their investigative CAR-T therapy.
We'll tell you about the Phase 2 clinical trial for Contineum Therapeutics' oral remyelination therapy.
We'll share the details of a study that shows ballroom dancing delivers both physical and psychological benefits to people with MS.
We'll share some potentially good news about managing MS-related fatigue.
And we'll give you a new opportunity to participate in MS research.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Inside the TEAAMS study :22
Cabaletta Bio announces Phase 1/2 trial for CAR-T therapy 1:45
TG Therapeutics will develop an injectable formulation for Briumvi 5:45
Contineum Therapeutics completes recruitment for Phase 2 trial for an oral remyelination therapy 7:52
Study shows that ballroom dancing delivers physical and psychological benefits for people with MS 9:05
Study shows that Elevida, an online German fatigue intervention, significantly reduces MS-related fatigue 11:32
Ashli and Victoria share their experience in the TEAAMS study 15:37
Share this episode 32:57
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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STUDY: Ballroom Dancing for People with Multiple Sclerosis: Perceptions of the Experience https://meridian.allenpress.com/ijmsc/article/26/Q4/355/504470/Ballroom-Dancing-for-People-With-Multiple
PARTICIPATE IN MS RESEARCH: Targeted Exercise for African-Americans with Multiple Sclerosis (TEAAMS) https://projectteaams.ahs.uic.edu/
PARTICIPATE IN MS RESEARCH: Confirmatory Trial for Alleviating Fatigue in MS (CAFE-MS)https://cafems.iconquerms.org/
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RealTalk MS Episode 387 Guests: Ashli and Victoria
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MS symptoms can worsen, and relapses can occur. And when that happens, how do you know whether you require immediate medical care? When is it time to go to the hospital? Dr. Kalina Sanders joins me to talk about when it's time to seek immediate medical care for MS. Dr. Sanders is a board-certified neurologist who specializes in multiple sclerosis and spasticity management at Baptist Health in Jacksonville Beach, Florida.
We're also talking about MS care in the United Arab Emirates with Professor Bassem Yamout, the President of the Middle East North Africa Committee for Treatment and Research in Multiple Sclerosis.
We'll explain why Bayer's new MRI contrast agent is good news for people with MS.
We'll tell you about a new Federal Trade Commission report that calls out Pharmacy Benefit Managers for inflating the price of generic specialty drugs by thousands of percent.
We'll share the details of a study that shows the profound impact of menopause on MS.
And we're sharing two different opportunities for you to participate in MS research.
We have a lot to talk about! Are you ready for RealTalk MS??!
A word about Facebook posts :22
This Week: Worsening symptoms? Relapse? When is it time to go to the Emergency Room? 1:46
FTC reports Pharmacy Benefit Managers have marked up generic specialty drugs 1000s of percent 2:20
Bayer's new MRI contrast agent contains 60% less gadolinium 4:57
Professor Bassem Yamout discusses MS in the United Arab Emirates 6:48
Study reveals menopause significantly increases the speed of disability worsening and brain cell damage in women with MS 15:08
Two opportunities for you to participate in MS research 17:38
Dr. Kalina Sanders explains when it's time to seek immediate medical care for MS 19:54
Share this episode 31:42
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS
Federal Trade Commission Interim Report on Pharmacy Benefit Managers and Specialty Generic Drugs https://www.ftc.gov/reports/specialty-generic-drugs-growing-profit-center-vertically-integrated-pharmacy-benefit-managers
Bayer Announces MRI Contrast Agent Gadoquatrane Meets Primary and Main Secondary Endpoints in Pivotal Phase III Studies https://www.businesswire.com/news/home/20250109869429/en/Bayers-investigational-MRI-contrast-agent-gadoquatrane-meets-primary-and-main-secondary-endpoints-in-pivotal-Phase-III-studies
STUDY: Association of Menopause with Functional Outcomes and Disease Biomarkers in Women with Multiple Sclerosis https://www.neurology.org/doi/10.1212/WNL.0000000000210228
PARTICIPATE IN MS RESEARCH: Psychometric Properties of Sexual Difficulties Scales in People Living with Multiple Sclerosis https://qualtrics.kcl.ac.uk/jfe/form/SV_br1fVoYGqXnLooK
PARTICIPATE IN MS RESEARCH: Efficacy and Safety Study of Frexalimab in Adults with Nonrelapsing Secondary Progressive Multiple Sclerosishttps://www.sanofistudies.com/SR0A/
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RealTalk MS Episode 386 Guests: Professor Bassem Yamout, Dr. Kalina Sanders
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One of the most important MS research events everyyear is the annual European Committee for Treatment and Research in MS Scientific Congress, usually referred to by its acronym, ECTRIMS. You've made our podcast episode that followed ECTRIMS the most downloaded episode of the year. So, this week, I'm revisiting the two conversations that I had immediately after the ECTRIMS conference ended. In what has become an annual tradition, it's my privilege to sit down with the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, just minutes after the conclusion of ECTRIMS to get his first impressions of the news and presentations that caught his eye. This year, I also wanted to bring you the perspective of someone who's living with MS, who attended ECTRIMS for the very first time. So, less than an hour after the conference concluded, I had a conversation with Kristine Werner Ozug. (Full disclosure, Kristine is a member of the RealTalk MS team.) We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Revisiting ECTRIMS 2024 :22
Dr. Bruce Bebo shares the announcements and presentations that caught his eye at ECTRIMS 1:59
Kristine Werner Ozug shares a patient's perspective on attending the largest MS research conference in the world 14:07
Share this episode 26:54
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LINKS
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RealTalk MS Episode 383 Guests: Dr. Bruce Bebo and Kristine Werner Ozug
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The holiday season provides me with an opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes of the year to revisit the most compelling and important conversations that I've had over the past year. This week, I'm revisiting two conversations I had with two experts on MS and women's health issues. MS affects women almost 3 times more frequently than it affects men, which should make understanding how MS might impact other women's health issues a priority. Unfortunately, that hasn't really been the case. The good news is we're seeing that situation change and you can expect to hear much more about MS and women's health in the coming year. This brings me to two conversations that I had this past year when I talked with Dr. Rhonda Voskuhl and Dr. Anna Shah. Dr. Shah is an Associate Professor of Neurology and Associate Clinic Director of Outpatient Neurology at the University of Colorado School of Medicine. Dr. Voskuhl is the Director of the UCLA Multiple Sclerosis Program, she holds the Jack H. Skirball Chair in MS, and Dr. Voskuhl also serves as Faculty Neurologist of the UCLA Comprehensive Menopause Care Program. We have a lot to talk about! Are you ready for RealTalk MS??!
Happy Holidays! :22
This Week: Revisiting our deep dive into women's health and MS :44
Dr. Rhonda Voskuhl discusses her research looking at why MS affects men and women differently 2:34
Dr. Anna Shah discusses how MS can affect women's health issues and how those health issues can affect MS 13:30
Share this episode 32:18
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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RealTalk MS Episode 382 Guests: Dr. Anna Shah, Dr. Rhonda Voskuhl
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This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.
In this special episode of RealTalk MS, Dr. Mary Rensel and Amanda Montague join me to explore HCP (Healthcare Provider) burnout and patient empowerment; and we'll be taking a close look at how patients and their healthcare providers can work together to support one another.
Dr. Mary Rensel is an Assistant Professor of Medicine at the Cleveland Clinic Lerner College of Medicine and Director of Pediatric Multiple Sclerosis and Wellness at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic.
Amanda Montague is a global thought leader and Chief Mission Officer at the Multiple Sclerosis Association of America. Amanda is also an active member of the MS in the 21st Century initiative, more commonly known as MS21. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals, or HCPs, and patient advocates.
To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
There's an alarming shortage of neurologists in the United States. That shortage makes it hard to be seen by a neurologist and, in some regions of the U.S., you may not even find an MS specialist without having to travel hundreds of miles. The good news is now there's an app for that! Joining me to talk about how an app called BeCare is already changing the game when it comes to MS care is the Chief Medical Officer of BeCareLink, Dr. Charisse Litchman.
The FDA has designated Tolebrutinib as a Breakthrough Therapy for the treatment of adults with non-relapsing secondary progressive MS. We're sharing the details.
We'll tell you where you can participate in a phase 2 clinical trial that's designed to test the efficacy of Foralumab, an investigational disease-modifying therapy formulated as a nasal spray, among adults with non-relapsing secondary progressive MS.
We'll share the details of a report that provides some frustrating data about out-of-pocket costs for MS prescription medications.
Dr. Alicyn Magruder reviews the risks and benefits of using off-label medications to manage MS.
And we'll share the results of a study that focused on how socioeconomic status impacts disease severity among kids and teens living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: An app that can tell you if your MS is worsening :22
FDA awards Tolebrutinib Breakthrough Therapy designation 1:04
Phase 2 clinical trial for Foralumab adds 6 additional sites 3:13
Study compares out-of-pocket costs of MS DMTs with meds for other neurologic conditions 5:55
Dr. Alicyn Magruder discusses using off-label medications to manage MS 9:51
Study analyzes the impact of socioeconomic status on disease severity in pediatric-onset MS 15:27
Dr. Charisse Lichtman explains how the BeCare MS app is changing the game and providing an important bridge to better MS care 19:52
Share this episode 30:53
Have you downloaded the free RealTalk MS app? 31:13
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Just copy this link & paste it into your text or email: https://realtalkms.com/381
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS on YouTube https://www.msif.org/webcast-clinical-trials
CLINICAL TRIAL: A Study of Nasal Foralumab in Non-Active Secondary Progressive Multiple Sclerosis Patients https://clinicaltrials.gov/study/NCT06292923
STUDY: Costs Are Still On the Rise for Commonly Prescribed Branded Neurologic Medications https://neurology.org/doi/10.1212/WNL.0000000000210029
STUDY: Association of Social Determinants of Health with Brain MRI Outcomes in Individuals with Pediatric Onset Multiple Sclerosis https://neurology.org/doi/10.1212/WNL.0000000000210140
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RealTalk MS Episode 381 Guests: Dr. Alicyn Magruder, Dr. Charisse Litchman
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If you're living with MS, you've probably already learned that hot weather, hot baths, or anything that causes your body temperature to increase can quickly cause your symptoms to worsen. But winter can also be a challenging time. Less daylight, frigid temperatures, ice, and snow can all have an impact on MS. Dr. Lisa Doggett returns to the podcast with tips and strategies for enjoying winter while staying healthy, safe, and warm.
We'll also remind you that the International Progressive MS Alliance global webcast is happening tomorrow -- Dec. 11th! And we'll share the details you'll need to sign up.
We'll tell you about study results from Sweden that show that experiencing serious COVID-19 makes it twice as likely that someone will develop MS. (And we'll tell you why those study results aren't as scary as they may sound!)
We're sharing research that has uncovered evidence of nerve damage in the central nervous system up to 9 years before someone experiences MS symptoms.
We'll tell you about a team of biomedical engineers who are creating a tiny implantable device that will warn you if your MS is worsening or if you're heading for a relapse.
And if you're over 55, you're living with MS, and you have 15 minutes to spare, we'll tell you about an online survey that we hope you'll decide to participate in.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Winning against winter when you're living with MS :22
Don't miss the International Progressive MS Alliance global webcast on Dec. 11 1:46
A study shows that serious COVID-19 doubles the likelihood that someone will develop MS 2:42
Research reveals that nerve damage can occur in the central nervous system up to 9 years before you can experience any symptoms of MS 6:13
Imagine a tiny device implanted in your arm that can alert you if your MS is worsening or you're headed for a relapse 8:48
If you're 55 years old or older and you've been diagnosed with MS, there's a survey just for you 10:56
Dr. Lisa Doggett shares tips and strategies for thriving in cold weather when you're living with MS 12:29
Share this episode 26:14
Have you downloaded the free RealTalk MS app? 26:33
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Just copy this link & paste it into your text or email: https://realtalkms.com/380
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER FOR THE WEBCAST: What We're Learning from Clinical Trials https://www.msif.org/webcast-clinical-trials
STUDY: SARS-CoV-2 Infection and Risk of Subsequent Demyelinating Diseases: National Register-Based Cohort Study https://academic.oup.com/braincomms/article/6/6/fcae406/7909395
STUDY: Temporal Dynamics of Plasma Neurofilament Light In Blood Donors with Preclinical Multiple Sclerosis https://neurology.org/doi/10.1212/NXI.0000000000200335
SURVEY: If you are 55 years old or older and living with MS, please complete https://illinois.qualtrics.com/jfe/form/SV_5oM7xmdpdSphTiC
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 380 Guests: Dr. Lisa Doggett
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Disease-modifying therapies work, and, as a result, people with MS are living longer. With half the MS population over the age of 55, it's never been more urgent to understand how the process of aging impacts MS and how MS impacts the process of aging. In this special episode of RealTalk MS, Dr. Leorah Freeman discusses the many factors associated with aging with MS.
This special episode of RealTalk MS is sponsored by Viatris.
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode V202 Guests: Dr. Leorah Freeman
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More effective treatments and even cures for MS can only happen as a result of clinical research. And clinical research can only happen when people living with MS choose to become research participants. But what are the pros and cons that you should consider when you're thinking about participating in MS research? The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, returns to the podcast to discuss the risks and benefits of participating in clinical research. We're also joined by Mimi Brown, who lives with primary progressive MS. Mimi will share her experiences as a participant in several MS research studies.
We'll also remember Professor Giancarlo Comi, a true giant in the MS research community who passed away last week.
We'll discuss the updated Brain Health -- Time Matters report.
We'll tell you about a research collaboration between the National MS Society, Breakthrough T1D (formerly the Juvenile Diabetes Research Foundation), and the Lupus Research Alliance.
And we're sharing the details about the International Progressive MS Alliance's upcoming global webcast.
We have a lot to talk about! Are you ready for RealTalk MS??!
Remembering Professor Giancarlo Comi :22
This Week: Participating in MS research 3:28
Experts release the Brain Health -- Time Matters report 4:10
The National MS Society teams up with Breakthrough T1D and the Lupus Research Alliance to fund research in common mechanisms that drive autoimmunity 6:35
The International Progressive MS Alliance is hosting a global webcast on Dec. 11 9:27
Dr. Kathy Zackowski and Mimi Brown discuss the risks and benefits of participating in MS research 10:58
Share this episode 29:52
Have you downloaded the free RealTalk MS app? 30:11
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REPORT: Brain Health -- Time Matters https://www.msbrainhealth.org/wp-content/uploads/2024/09/Brain-Health-Time-Matters-2024.pdf
VIDEO: Brain Health -- Time Matters https://www.msbrainhealth.org/launch-videos
Decoding Immunity: Common Mechanisms of Autoimmunity https://decodingautoimmunity.org
REGISTER FOR THE WEBCAST: What We're Learning from Clinical Trials https://www.msif.org/webcast-clinical-trials
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 379 Guests: Dr. Kathy Zackowski and Mimi Brown
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Too often, care partners remain invisible as they deal with the emotional, physical, and even financial burdens that go along with supporting a loved one who's living with multiple sclerosis.
November is National Family Caregivers Month, and I'm devoting this entire episode to a roundtable discussion with four remarkable care partners as they share their insights, experiences, and lessons learned caring for a loved one with MS. You won't want to miss my conversation with Barbara, Marina, Maiya, and Matt.
We have a lot to talk about! Are you ready for RealTalk MS??!
Giving thanks :22
This Week: A roundtable discussion with four amazing MS care partners 1:31
Barbara, Marina, Maiya, and Matt discuss their roles as care partners 1:58
Share this episode 33:22
Have you downloaded the free RealTalk MS app? 33:43
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Just copy this link & paste it into your text or email: https://realtalkms.com/378
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The MS Care Partner Connection https://mscarepartnerconnection.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 378 Guests: Barbara, Marina, Maiya, and Matt
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There are some people who, once you meet them, it's impossible to forget them. They seem to leave an indelible impression. Lydia Emily is one of those people. Whether it's through her art that occasionally escapes the canvas to be expressed as massive urban murals proclaiming End MS, or through her outspoken MS advocacy. Lydia Emily is a force. Now, along with co-author Lenlee Keep, Lydia Emily has channeled that energy into a book entitled, The Art of Hope: The Life and Art of Lydia Emily. Lydia Emily and her co-author, Lenlee Keep, join me this week to talk about the process of writing the book and some of the issues affecting people with MS that Lydia Emily is passionate about.
We'll also tell you about study results that provide an answer to how nerve cells die in MS.
We'll share results from a study that shows MS progression may not be directly connected to the number of lesions someone may have.
And we'll tell you about research that provides evidence for continuing your MS disease-modifying therapy, no matter your age.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Art of Hope :22
A study uses a novel mouse model to explain how nerve cells die in MS 2:17
Study results show that MS progression may have less to do with the number of lesions and more to do with what's happening inside those lesions 5:23
Study results provide evidence for continuing your DMT, even as you age 9:15
Artist Lydia Emily and co-author Lenlee Keep discuss The Art of Hope: The Life and Art of Lydia Emily 14:17
Share this episode 34:50
Have you downloaded the free RealTalk MS app? 35:11
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Just copy this link & paste it into your text or email: https://realtalkms.com/377
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Remyelination Protects Neurons from DLK-Mediated Neurodegeneration https://www.nature.com/articles/s41467-024-53429-5
STUDY: Advanced MRI Measures of Myelin and Axon Volume Identify Repair in Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/ana.27102
STUDY: Impact of Discontinuing Disease-Modifying Therapies On Healthcare Utilization Among Midlife Patients with Multiple Sclerosis in the United States https://www.jmcp.org/doi/10.18553/jmcp.2024.30.11.1248
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 377 Guests: Lydia Emily and Lenlee Keep
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MS affects almost 3 times as many women as men, often affecting women of childbearing age. In this special episode of RealTalk MS, Dr. Riley Bove answers some of the important questions about the impact of MS on a woman's pregnancy and the impact of pregnancy on a woman's MS.
This special episode of RealTalk MS is sponsored by Viatris.
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode V201 Guests: Dr. Riley Bove
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On this podcast, we tend to talk a lot about new technologies, emerging treatments, the most recently approved disease-modifying therapies, and even some DMTs that haven't yet been approved. And in the midst of all that cutting-edge research and evolving science, it's easy to lose sight of the fact that expressive therapies like dance and movement therapy, music therapy, and art therapy have all been shown to help promote self-efficacy, emotional well-being, and motor control in people living with MS. Dr. Francois Bethoux joins me on today's episode to discuss the benefits of integrating dance and movement therapy, music therapy, and art therapy into your treatment plan to help manage your MS symptoms and enhance your well-being.
November is National Family Caregivers Month, and we're sharing a neat piece of tech that can not only make life easier for MS caregivers but can make life better for their care recipients, as well. CEO Costin Tuculescu introduces us to his company's new device, OnScreen.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Adding expressive therapies to your MS treatment plan :22
OnScreen CEO Costin Tuculescu explains how OnScreen can help people with MS and their caregivers 1:34
Dr. Francoi Bethoux discusses the benefits of dance therapy, music therapy, and art therapy for people living with MS 17:45
Share this episode 31:47
Have you downloaded the free RealTalk MS app? 32:06
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Just copy this link & paste it into your text or email: https://realtalkms.com/376
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
OnScreen https://onscreeninc.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 376 Guests: Costin Tuculescu and Dr. Francois Bethoux
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Being a teenager is hard. So, imagine for a moment that in addition to everything else that teenagers have to endure, you're a teenager who's been diagnosed with MS. Your ability to participate in after-school activities or just hang out with your friends is impacted by MS-related fatigue. The typical adolescent anxiety over something someone posted on social media evolves into depression. And cognitive issues begin to make it harder for you in the classroom. This is an unfortunate reality for many adolescents who are living with MS.
Joining me to discuss how MS affects adolescents and how families can help manage MS is Dr. Ann Yeh. Dr. Yeh is a Professor of Pediatric Neurology at the University of Toronto and the director of the MS and Neuroinflammatory Disorders Program and Fellowship Program at the University of Toronto's Hospital for Sick Children, known as SickKids.
We'll also tell you about a new online resource for MS care partners.
We'll share the results of a study that explored how different symptom management responsibilities impact MS care partners.
We'll share details of a study that demonstrated positive results in improving MS-related fatigue.
We'll tell you about the discovery of a plant-based molecule that is showing promise in promoting myelin repair.
And we're sharing surprising research results that have more than doubled the prevalence of MS in Australia.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing Teenage MS :22
November is National Family Caregivers Month 1:47
You're invited to preview MS Care Partner Connection 3:40
A study reveals the most challenging MS symptoms for care partners to manage 6:33
Study results show Modafinil and cognitive behavioral therapy are both effective in managing MS fatigue 7:25
Researchers discover a plant-based molecule that may be effective in promoting myelin repair 9:46
Prevalence of MS in Australia more than doubled over an 11-year period 12:54
Dr. Ann Yeh discusses the challenges of MS among adolescents 16:05
Share this episode 31:15
Have you downloaded the free RealTalk MS app? 31:36
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Just copy this link & paste it into your text or email: https://realtalkms.com/375
ADD YOUR VOICE TO THE CONVERSATION
I've always considered the RealTalk MS podcast a conversation. This is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The MS Care Partner Connection https://mscarepartnerconnection.com
Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis
STUDY: Symptom Management Among Multiple Sclerosis Care Partners in Canada https://meridian.allenpress.com/ijmsc/article/25/6/281/496792/Symptom-Management-Among-Multiple-Sclerosis-Care
STUDY: Comparative Effectiveness of Cognitive Behavioural Therapy, Modafinil, and Their Combination for Treating Fatigue in Multiple Sclerosis (COMBO-MS): A Randomised, Statistician-Blinded, Parallel-Arm Trial https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00354-5/abstract
STUDY: Distinct Chemical Structures Inhibit the CEMIP Hyaluronidase and Promote Oligodendrocyte Progenitor Cell Maturationhttps://www.jbc.org/article/S0021-9258(24)02418-9/fulltext
STUDY: Significantly Increasing Multiple Sclerosis Prevalence in Australia from 2010 to 2021 https://journals.sagepub.com/doi/10.1177/13524585241265890
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RealTalk MS Episode 375 Guest: Dr. Ann Yeh
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Learning to live with MS is learning to live with loss. For some, those losses may be minor and seem relatively insignificant. For others, those losses can be huge and life-altering. The definition of grief is an emotional response to a significant loss. It's not unusual to grieve over those things in your life that have been lost due to MS. In fact, healthy grieving is a necessary emotional step to moving forward in life.
Dr. Holly Hendin, a faculty physician and psychiatrist at St. Joseph’s Hospital Medical Group Outpatient Behavioral Health in Phoenix, Arizona, joins me to explore grieving when you live with MS.
We'll also share the results of a study that show other health conditions can have a negative impact on MS disease activity, like relapses and disability worsening.
And we're sharing the details of the $4.6 million dollar investment the National MS Society is making in research focused on myelin repair.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Grieving when you're living with MS :22
A study shows how other health conditions may cause MS to worsen 2:00
The National MS Society is investing $4.6 million dollars in research focused on myelin repair 6:21
Dr. Holly Hendin helps us understand the importance of healthy grieving when you're living with MS 9:39
Share this episode 35:30
Have you downloaded the free RealTalk MS app? 35:50
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Just copy this link & paste it into your text or email: https://realtalkms.com/374
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I've always considered the RealTalk MS podcast a conversation. This is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Comorbidity and Disease Activity in Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2823966
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RealTalk MS Episode 374 Guest: Dr. Holly Hendin
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Now that he's had a chance to digest all of the research presented at ECTRIMS, Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research, is back to share the key research presented at the largest MS research conference in the world. This episode of RealTalk MS is the perfect follow-up to my initial conversation with Bruce, which occurred just minutes after ECTRIMS ended. (If you missed our conversation, you may want to check out Episode 369 of RealTalk MS.)
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Part 2 of our coverage of ECTRIMS 2024 :22
Dr. Bruce Bebo shares the key research presented at ECTRIMS 1:06
Share this episode 26:13
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 369: ECTRIMS 2024 with Kristine Werner Ozug and Dr. Bruce Bebo https://realtalkms.com/369
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 373 Guest: Dr. Bruce Bebo
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Open enrollment is underway! And if you're one of the 25% of people living with MS who get their coverage through Medicare, there are some major changes coming in 2025. So, it's especially important that you review your prescription drug coverage to make sure you're enrolled in the Medicare Part D plan that's best for you.
Sarah Anderson, pharmacist and senior director of clinical resources and programming at the National MS Society, joins me to help us decipher those changes and navigate the sometimes confusing world of health insurance.
We'll also tell you about a research team that's editing human DNA to promote myelin repair.
We'll share the results of a study that offers some surprising evidence about the quality of MS care for women in France.
We'll explain why a study that shows people with MS are at a higher risk for being diagnosed with cancer may not be as scary as it sounds.
In my conversation with Dawn Schottlandt, you'll hear the story of In My Running Shoes and learn how people with MS and other disabilities can benefit from their work.
And we'll give you all the details about artist Elizabeth Jameson's exhibition, An Intimate Journey, which opens in New York on Saturday, October 19th.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Open Enrollment has begun :22
Researchers succeed in editing human DNA to promote myelin repair 1:14
Research reveals women with MS are often undertreated in France 3:38
Are people with MS more likely to develop cancer? 6:18
Dawn Schottlandt explains why she founded In My Running Shoes and how you might benefit 9:12
Elizabeth Jameson's art exhibition, An Intimate Journey, opens in New York on Saturday 16:01
Sarah Anderson explains the changes to Medicare in 2025 18:04
Share this episode 27:56
Have you downloaded the free RealTalk MS app? 28:16
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Just copy this link & paste it into your text or email: https://realtalkms.com/372
ADD YOUR VOICE TO THE CONVERSATION
I've always considered the RealTalk MS podcast a conversation. This is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: CRISPR-Edited ES-Derived Oligodendrocyte Progenitor Cells Improve Remyelination in Rodents https://www.nature.com/articles/s41467-024-52444-w
STUDY: Cancer Risk Among Patients with Multiple Sclerosis https://www.neurology.org/doi/10.1212/WNL.0000000000209885
In My Running Shoes https://inmyrunninigshoes.org
Elizabeth Jameson exhibition at the Positive Exposure Gallery https://positiveexposure.org/event/41014
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 372 Guests: Dawn Schottlandt and Sarah Anderson
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In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker.
One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And Dee's initial DM led to my conversation with Dee and the inventor of the Alinker, a true difference-maker, BE Alink.
The National MS Society's 3rd annual Hispanic/Latinx MS Experience Summit is just two days away! We're sharing all the details, including how you can register for this free virtual event.
And I'm sharing my thoughts following attending the University of Pittsburgh's bi-annual caregiver research conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
The Hispanic/Latinx MS Experience Summit is two days away! :22
Don't miss our ECTRIMS Extra Conversations 1:38
Thoughts following attending the caregiver research conference at the University of Pittsburgh 2:15
Dee and BE discuss all things Alinker (including how you can get yours!) 9:26
Share this episode 37:02
Have you downloaded the free RealTalk MS app? 37:23
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/371
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/resources/get-support/education-programs-and-library/hispanic-latinx-ms-experience
MS Care Partner Connection https://mscarepartnerconnection.com
The Alinker https://thealinker.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 371 Guests: Dee Ecklund and BE Alink
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With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh.
Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael’s Hospital in Ontario, Canada. Dr. Oh is also the Principal Investigator in Gemini, the Phase 3 clinical trial for Tolebrutinib and relapsing-remitting MS.
At ECTRIMS, Dr. Oh shared the outcome of the Gemini clinical trial.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims244
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guest: Dr. Jiwon Oh
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In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in Episode 125 of RealTalk MS.
The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In Episodes 297and 298 of RealTalk MS, I shared news and interviews from what I described as yet another historic meeting.
The Pathways to Cures Research Roadmap has been updated, and I'm devoting this week's episode of RealTalk MS to my conversation with the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and the MS Society's Vice-President of Global Initiatives, Shawna Golden, to bring us up to date on how this global MS research initiative has been refined and enhanced and how it's resetting the global MS research agenda.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Pathways to Cures research roadmap has been updated :22
Dr. Bruce Bebo and Shawna Golden discuss the refined and enhanced Pathways to Cures research roadmap 2:34
Share this episode 29:58
Have you downloaded the free RealTalk MS app? 30:18
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/370
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 125: From the Pathways to Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 297: From the Pathways to Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 370 Guests: Dr. Bruce Bebo, Shawna Golden
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With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Peter Calabresi.
Dr. Peter Calabresi is the Director of the Division of Neuroimmunology and the Director of the Multiple Sclerosis Center at Johns Hopkins Medicine. He is the principal investigator on several clinical trials and oversees research projects focused on developing new anti-inflammatory and neuroprotective therapies for MS.
At ECTRIMS, Dr. Calabresi co-chaired what was probably the most highly anticipated presentation at this year's conference: the unveiling of updated criteria for diagnosing MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims243
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guest: Dr. Peter Calabresi
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With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Rachel Horne and Professor Kerstin Hellwig.
Professor Kerstin Hellwig is the 2024 recipient of the Rachel Horne Prize for Women's Research in MS. Professor Hellwig was honored at ECTRIMS for her pioneering research into understanding and navigating the safety of approved treatments for women with MS before, during, and after pregnancy.
Professor Hellwig is a senior consultant at St Josef Hospital, Ruhr University, Bochum, Germany, specializing in MS and neuroimmunology, and is a leading clinician-scientist in the field of MS and family planning.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims242
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guests: Rachel Horne, Professor Kerstin Hellwig
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ECTRIMS 2024, the largest MS research conference in the world concluded last week, and in this week's episode, we'll be hearing two slightly different perspectives on which news, announcements, and presentations stood out at this year's meeting. The ECTRIMS conference can feel almost overwhelming. You find yourself among 9 or 10 thousand other attendees, trying to determine which of the more than 1700 scientific presentations you want to learn more about. It's both a marathon and a sprint that seem to be taking place simultaneously.
Kristine Werner Ozug is a member of the RealTalk MS team and a person who lives with MS. This week, Kristine shares her perspective on attending ECTRIMS for the first time.
At the conclusion of ECTRIMS, you can almost hear a collective sigh coming from all the attendees. It feels like you've crossed the finish line, but now the work of sorting and processing all that you've seen, heard, and read over what feels like a non-stop 72-hour blur actually begins.
Joining me to share his initial thoughts on the ECTRIMS news that caught his eye is the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: ECTRIMS 2024 :22
It's our 7th anniversary! 1:28
Kristine Werner Ozug shares a patient's perspective on attending the largest MS research conference in the world 3:56
Dr. Bruce Bebo shares the news and announcements that caught his eye at ECTRIMS 17:19
Share this episode 28:59
Have you downloaded the free RealTalk MS app? 29:19
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/369
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 369 Guests: Kristine Werner Ozug, Dr. Bruce Bebo
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With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Fred Lublin.
Dr. Fred Lublin is the Director of the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai. He participated in the development of the very first disease-modifying therapy that was approved for MS. When we talk about relapsing-remitting MS, secondary-progressive MS, or primary-progressive MS, we're using the clinical course descriptions of MS that were developed and subsequently updated by Dr. Lublin and his colleagues.
At ECTRIMS, Dr. Lublin gave a presentation on the need to update the way we think about and talk about multiple sclerosis by, once again, updating those clinical course descriptors.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims241
ADD YOUR VOICE TO THE CONVERSATI
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra Guest: Dr. Fred Lublin
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Living with the unpredictability of MS sometimes feels like riding a rollercoaster. As you experience the twists and turns of life with MS, you can sometimes feel unmoored from the person you thought you were. You can sense your priorities, motivations, and values shifting. And, in those moments, it becomes easy to lose your sense of purpose. Clinical assistant professor and rehabilitation psychologist at the University of Michigan, Dr. Evan Smith, joins me to discuss how to identify and reconnect with your core values and live a more purposeful and satisfying life.
We'll also tell you about Creating Order, an art exhibit featuring 12 artists living with MS. (Don't miss our conversation with the co-curators and lead artist in this unique exhibit!)
And we're sharing the details of MS Stand Up, a night of comedy and cocktails at the Gotham Comedy Club.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Greetings from ECTRIMS! :22
Our 7th anniversary is one week away! 2:00
Coming Up: The importance of staying connected to your core values 2:30
Creating Order art exhibit features 12 artists living with MS 3:35
My conversation with Creating Order co-curators Pam Schoenberg and Ted Meyer, and lead artist, Susan Trachman 4:27
MS Stand Up is happening September 30 at the Gotham Comedy Club 15:24
Dr. Evan Smith discusses how to lead a purposeful life while living with MS 16:54
Share this episode 33:17
Have you downloaded the free RealTalk MS app? 33:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/368
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Creating Order exhibit at the DNJ Gallery https://dnjgallery.net
MS Stand Up https://msstandup.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 368 Guests: Pam Schoenberg, Ted Meyer, Susan Trachman, Dr. Evan Smith
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Living with MS is expensive. A recent study funded by the National MS Society found the average cost of living with MS in the United States is $88,487 a year. Even with insurance, that can turn out to be a heavy lift.
One thing you don't need is to be worrying about money while you're already worrying about MS. So, when I think about discussing budgeting and managing your personal finances when you're living with MS, I think we're really talking about preserving your quality of life.
Joining me with strategies for budgeting and managing debt when you're living with MS is the Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary.
We'll also tell you about the updated Pathways to Cures Research Roadmap and the first ever global landscape analysis of MS research funding.
We're sharing very encouraging results from the Phase 2 open-label extension study of Fenebrutinib, an experimental BTK inhibitor.
We'll give you the details of a pilot study that demonstrated what may be a successful treatment for sexual dysfunction among men and women living with MS.
We'll tell you why middle-aged people with MS may want to consider resistance training.
And we'll tell you how to register for the National MS Society's Voting Without Barriers webinar.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Budgeting for Living with MS :22
The Pathways to Cures Research Roadmap has been updated and refined 1:25
There's very encouraging news from the Phase 2 open-lable extension study of Fenebrutinib 5;31
Results from a pilot study point to successful treatment for sexual dysfunction among men and women living with MS 6:35
Study results show that resistance training is beneficial for middle-aged people with MS 9:52
We're 8 weeks away from election day in the U.S. and the National MS Society is hosting a webinar about access to polling places 11:36
Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary, shares tips and strategies for taming your household budget and budgeting for living with MS 15:49
Share this episode 33:16
Have you downloaded the free RealTalk MS app? 33:36
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/367
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 297: From the Pathways To Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2) https://realtalkms.com/298
The Refined Pathways To Cures Research Roadmap https://journals.sagepub.com/doi/10.1177/13524585241266483
The First Global Landscape Analysis of Multiple Sclerosis Research Funding https://journals.sagepub.com/doi/full/10.1177/13524585241265961
STUDY: Tibial Nerve Stimulation in the Management of Primary Sexual Dysfunction in Patients with Multiple Sclerosis: A Pilot Randomized Control Trial https://link.springer.com/article/10.1007/s10072-024-07687-2
STUDY: Is Resistance Training an Option to Improve Functionality and Muscle Strength In Middle-Aged People with Multiple Sclerosis? A Systematic Review and Meta-Analysis https://www.mdpi.com/2077-0383/13/5/1378
REGISTER for the Voting Without Barriers Webinar https://p2a.co/Dqy1Xpk
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 367 Guest: Bruce McClary
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Most of us know Medicare as health insurance for Americans who are 65 or older, but when they qualify for Social Security disability benefits, people younger than 65 automatically qualify for Medicare. Today, between 25 and 30% of the people living with MS are Medicare beneficiaries.
Whether you already have Medicare or you'll be signing up for Medicare in the future, getting the right coverage requires making some important choices.
Licensed Medicare Advisor Laquel Thomas joins me with tips, strategies, and explanations for successfully navigating Medicare and getting the coverage you need.
We’re explaining the good news in the results from a Phase 3 clinical trial for Tolebrutinib, Sanofi’s experimental oral BTK inhibitor. The trial showed that, compared to placebo, Tolebrutinib met the primary endpoint, delaying the onset of confirmed disability progression in people with non-relapsing secondary progressive MS.
Take My Hand is an Australian film based on the true story of Claire Jensz, a mother of three living in London who is diagnosed with MS at the peak of her high-powered career. Be sure to catch my conversation with Claire, Radha Mitchell, the film's star, and John Raftopoulos, the film's director.
We're sharing the details of a study that may have uncovered an underlying cause of MS and, perhaps, all autoimmune diseases.
We'll tell you about the results of a stem cell study that show MS may involve more than just immune cells.
And we'll give you what may be surprising details of a study that focused on how MS impacts the quality of life of fully ambulatory people living with mild MS symptoms.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Making the right Medicare choices :22
There's good news about the results of the Phase 3 clinical trial for Tolebrutinib 1:41
My conversation with the director, star, and woman whose story about living with MS is the real-life basis for the new film, Take My Hand 4:28
Have researchers at Yale discovered an underlying cause of MS? 14:11
Newly published results of a stem cell study show that MS may also be driven by brain cells 17:19
Study results show how MS impacts the quality of life among fully ambulatory people with mild MS symptoms 19:15
Licensed Medicare Advisor, Laquel Thomas, explains all the variables you want to consider in making choices about your Medicare coverage 22:12
Share this episode 33:40
Have you downloaded the free RealTalk MS app? 34:01
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/366
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
TRAILER: Take My Hand https://youtu.be/PdNMb7-AeEs
STUDY: An Autoimmune Transcriptional Circuit Drives FOXP3+ Regulatory T-Cell Dysfunction https://www.science.org/doi/10.1126/scitranslmed.adp1720
STUDY: Patient iPSC Models Reveal Glia-Intrinsic Phenotypes in Multiple Sclerosis https://www.sciencedirect.com/science/article/abs/pii/S1934590924002881
STUDY: Determinants of Self-Perceived Quality of Life in Mildly Disabled Multiple Sclerosis Patients: A Cross-Sectional Study https://pubmed.ncbi.nlm.nih.gov/38526763
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 366 Guest: Claire Jensz, John Raftopolous, Radha Mitchell, Laquel Thomas
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If you're a regular listener, you know that I rely on the RealTalk MS listener community to let me know which topics you'd like to hear about on this podcast. A few years ago, in episode 264, listener Dawnia Baynes did a podcast takeover, and interviewed me. Since then, I've heard from a bunch of you who, for some reason, want to hear more about me. So, when listener Kyra Millich asked if she could interview me, it felt like it was time.
In today's episode, you'll find out what I like to do when I'm not doing this podcast, I'll share some of the most memorable moments in my life, you'll hear how and why I started RealTalk MS, and I hope you'll get to know me a little better.
You'll also hear about results from a study that show people with MS are far less likely to be diagnosed with Alzheimer's disease compared to people who don't have MS.
We'll tell you about a Phase 1 clinical trial for a CAR-T cell therapy for MS.
And you'll learn the details of a different Phase 1 clinical trial for a different CAR-T cell therapy for MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Jon gets interviewed :22
Study results show people with MS are less likely to get Alzheimer's disease than people who don't have MS 1:23
TG Therapeutics announces Phase 1 clinical trial of CAR-T cell therapy for MS 3:44
FDA clears Immpact Bio for Phase 1 clinical trial of CAR-T cell therapy for hard-to-treat MS 7:13
Listener Kyra Millich interviews Jon 8:48
Share this episode 40:03
Have you downloaded the free RealTalk MS app? 40:23
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Just copy this link & paste it into your text or email: https://realtalkms.com/365
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Unexpected Low Rate of Amyloid-β Pathology in Multiple Sclerosis Patients https://onlinelibrary.wiley.com/doi/10.1002/ana.27027
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 365
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Getting an MS diagnosis is not always the quick, straightforward process we'd like it to be. For some people, the process can drag on for years. But getting that diagnosis only happens when you and your primary care physician recognize that something's going on.
It might be a sudden vision issue. Maybe it's unexplained tingling in an arm or leg. Or maybe it's something more acute that gets your attention. A wide variety of signs could point to MS, but they could also point to other health conditions.
Dr. Leorah Freeman, Director of the Multiple Sclerosis and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin, joins me this week to help us better understand the signs and symptoms of multiple sclerosis.
Just as COVID-19 viral activity is increasing across the United States, we're sharing the results of a study that should put your mind at ease and motivate you to get that COVID-19 booster vaccination when it becomes available next month.
We'll tell you about a Phase 1 clinical trial that's getting underway for a novel cell therapy that may be effective in stopping MS.
You'll hear about a grant from the National Institutes of Health that will fund a study on the fear of falling among people with MS.
The 16th annual Burgers to Beat MS fundraising event is taking place on August 22nd at A&W locations across Canada. We'll give you the details on how you can participate -- whether you happen to be in Canada or not!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Understanding the signs and symptoms of MS :22
Study results show no increase in the risk of an MS relapse after COVID-19 vaccination booster 1:43
Phase 1 clinical trial of a novel cell-based therapy for MS is underway 4:12
NIH grant to investigate the fear of falling among people with MS 7:13
Burgers to Beat MS is happening at A&W locations across Canada on August 22nd! 9:28
Dr. Leorah Freeman discusses the sometimes confusing signs and symptoms of MS 11:09
Share this episode 28:36
Have you downloaded the free RealTalk MS app? 28:56
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/364
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Risk of Relapse After COVID-19 Vaccination Among Patients with Multiple Sclerosis in France https://www.neurology.org/doi/10.1212/WNL.0000000000209662
Burgers to Beat MS https://burgerstobeatms.ca
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 364 Guest: Dr. Leorah Freeman
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For some people, getting in their car and heading for, well, anywhere represents freedom and independence. For others, it's a way to get to their jobs, get to their medical appointments, get the kids to school, and run necessary errands. MS can change all of that.
Occupational Therapist and Certified Driver Rehabilitation Specialist Jenny Nordine joins me to discuss how to preserve your independence while protecting yourself and the people around you when you're driving with MS.
You'll also meet Dr. Susan Seizer, a true difference-maker and one of the founders of the Mobility Aids Lending Library.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Maintaining your independence and keeping yourself and others around you safe when you're driving with MS :22
Dr. Susan Seizer discusses the Mobility Aids Lending Library and the stigma of disability 1:26
Occupational Therapist and Certified Driver Rehabilitation Specialist, Jenny Nordine, discusses how to preserve your independence while protecting yourself and the people around you when you're driving with MS 20:35
Share this episode 31:25
Have you downloaded the free RealTalk MS app? 31:45
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/363
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Mobility Aids Lending Library https://mcpl.info/commorg/mobility-aids-lending-library-mall
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 363 Guest: Dr. Susan Seizer, Jenny Nordine OT/L, CDRS
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Integrative medicine brings conventional and complementary treatments together in a coordinated way. This approach to health and wellness represents a growing trend across the United States, especially among people who live with a chronic disease like MS.
Dr. Lynne Shinto joins me to explain what integrative medicine is and how to safely incorporate complementary treatments into your MS care plan.
We'll also tell you about study results that show how the common cold, flu, or a urinary tract infection can all contribute to MS worsening.
We'll tell you about the research team that has successfully used an artificial intelligence algorithm to predict future MS disability progression.
We'll share the details behind the work of another research team that successfully used an artificial intelligence algorithm to reliably diagnose MS.
The European Union's AI Act went into effect last week. We're explaining all the ways this new law will impact healthcare.
We have a lot to talk about! Are you ready for RealTalk MS??!
Remembering June Halper :22
This Week: Decoding Integrative Medicine 1:58
STUDY: Infections outside the central nervous system contribute to MS worsening 2:42
STUDY: Artificial intelligence model reliably predicts future MS disability progression 5:33
STUDY: Artificial intelligence model uses retinal imaging to reliably diagnose MS 7:51
How the European AI Act will impact healthcare 10:33
Dr. Lynne Shinto discusses the role of Integrative Medicine in treating MS 14:55
Share this episode 28:49
Have you downloaded the free RealTalk MS app? 29:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/362
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Systematic Inflammation Associates With and Precedes Cord Atrophy in Progressive Multiple Sclerosis https://academic.oup.com/braincomms/article/6/3/fcae143/7655554
STUDY: Longitudinal Machine Learning Modeling of MS Patient Trajectories Improves Predictions of Disability Progression https://pubmed.ncbi.nlm.nih.gov/34146771
STUDY: SLO-NET: Enhancing Multiple Sclerosis Diagnosis Beyond Optical Coherence Tomography Using Infrared Laser Reflectance Scanning Ophthalmoscopy Images https://tvst.arvojournals.org/article.aspx?articleid=2800432
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 362 Guests: Dr. Lynne Shinto
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Less than two weeks ago, the National MS Society announced the appointment of Dr. Tim Coetzee as its new President and CEO. The MS Society's board chair, Peter Porrino, commented, "Tim is a trusted voice of the global MS community, a highly respected scientist, and we are excited for him to bring his transformative leadership to drive us into our next era to achieve a world free of MS."
I thought it was important for everyone in the RealTalk MS listener community to hear from Tim and learn firsthand what his vision and priorities are for the MS Society. So, I'm dedicating this entire episode to my conversation with the new President and CEO of the National MS Society, Dr. Tim Coetzee.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A conversation with the new President and CEO of the National MS Society, Dr. Tim Coetzee :22
Share this episode 28:32
Have you downloaded the free RealTalk MS app? 28:52
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/361
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 361 Guest: Dr. Tim Coetzee
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It's hard to imagine any area of our lives that hasn't been transformed by digital technology. That's certainly true for healthcare in general and MS diagnosis and treatment in particular.
Dr. Riley Bove joins me to discuss the role that digital technology already plays in the diagnosis and treatment of MS and to share a preview of what's coming next.
The National MS Society has named its new President and CEO. We're sharing the details!
We'll tell you about some of the benefits that are being observed in the Phase 2 clinical trial and extension study of Frexalimab, an experimental antibody that may be on the path to becoming a highly effective disease-modifying therapy.
We'll share the details behind the FTC's planned lawsuit against the three largest Pharmacy Benefit Managers (and we'll tell you why that matters to anyone taking a prescription medication).
Stressing out about an upcoming MRI exam? We're sharing info about Happy MRI, a website that's been designed to relieve MRI-related anxiety.
And we're reminding you that Crush MS, the Napa Valley wine-tasting fundraising event, is happening this Saturday, July 27th. We'll let you know where to get your ticket!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The impact of digital technology :22
Dr. Tim Coetzee named the President and CEO of the National MS Society 1:50
Frexalimab shows significant benefits in Phase 2 clinical trial 4:08
FTC to file suit against three largest Pharmacy Benefit Managers 6:08
Happy MRI is designed to relieve MRI-related anxiety 8:03
We're just days away from Crush MS 9:47
Dr. Riley Bove discusses how digital technology is changing MS diagnosis and treatment 11:21
Share this episode 28:54
Next week: Newly named President and CEO of the National MS Society, Dr. Tim Coetzee, talks about his vision for the MS Society and shares his immediate priorities 29:14
Have you downloaded the free RealTalk MS app? 29:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/360
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 359: The Unraveling with Dr. Nara Michaelson https://realtalkms.com/359
Happy MRI https://happymri.com
CRUSH MS https://crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 360 Guests: Dr. Riley Bove
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As Harvard Fellow Dr. Nara Michaelson treated women who had been recently diagnosed with MS, she recognized they shared characteristics that she had observed in victims of violent domestic abuse. Dr. Michaelson's observation led her to write The Unraveling, an essay that highlights the fear that can accompany the uncertainty of living with MS.
Dr. Michaelson joins me to discuss the experiences that led to her award-winning essay and to share resources that can help maintain your emotional health and well-being in a good place when you're living with MS.
We're also sharing the details about BEAT-MS, a clinical trial that will compare autologous hematopoietic stem cell transplantation (AHSCT) with high-efficacy disease-modifying therapies when it comes to reducing or eliminating MS relapse activity. And we'll let you know how to find out if you could be a potential participant in this important clinical trial.
We'll tell you about the FDA approval granted to Abata Therapeutics to conduct a Phase 1 clinical trial of ABA-101, their experimental therapy for progressive MS.
We're sharing news about the Federal Trade Commission's newly released report on Pharmacy Benefit Managers. (And we'll tell you why this matters to every person in the United States who takes a prescription medication)
And we'll tell you about Take Charge, a new virtual program from Can Do MS that you can participate in at no cost!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Unraveling :22
BEAT-MS clinical trial compares AHSCT with high-efficacy DMTs 1:58
FDA clears ABA-101 for Phase 1 clinical trial 5:17
FTC is turning its focus to Pharmacy Benefit Managers 6:55
Can Do MS offers new Take Charge virtual program 11:47
Dr. Nara Michaelson discusses her award-winning essay, The Unraveling 13:23
Share this episode 29:15
Next week: Dr. Riley Bove discusses how digital technology has become a game-changer in diagnosing, treating, and managing MS 29:35
Have you downloaded the free RealTalk MS app? 29:55
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/359
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The Unraveling https://neurology.org/doi/10.1212/WNL.0000000000209492
BEAT-MS Clinical Trial https://beat-ms.org
RealTalk MS Episode 205: A Potentially Transformational Therapy for Progressive MS with Samantha Singer and Dr. Richard Ransohoff https://realtalkms.com/205
FTC Report -- Pharmacy Benefit Managers: The Powerful Middlemen Inflating Drug Costs and Squeezing Main Street Pharmacies https://ftc.gov/system/files/ftc_gov/pdf/pharmacy-benefit-managers-staff-report.pdf
REGISTER for Take Charge https://cando-ms.org/event/take-charge-young-and-newly-diagnosed
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 359 Guests: Dr. Nara Michaelson
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The inequities associated with gaining access to quality healthcare are often discussed, and my guest this week has taken steps to address them. Dr. Jaime Imitola and his team at UCONN Health have created a tool called VISIBL-MS, a bilingual framework designed to increase doctors' and patients' awareness of the early signs of MS.
We'll also share the results of a study that clearly illustrate progression independent of relapse activity (PIRA).
We'll tell you about a small study that showed a positive outcome for people with progressive MS who received neural stem cell therapy.
We'll share details of a study that identified a panel of 20 blood-based proteins that have been shown to be predictive of MS disease activity. (And we'll tell you why that's a good thing for patients and researchers!)
And we're reminding you that we're just over 2 weeks away from CRUSH MS!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: VISIBL-MS :22
Study results provide evidence of PIRA 1:41
Stem cell therapy for progressive MS? 4:28
Researchers identify a panel of 20 proteins that are predictive of MS disease activity 7:19
We're just over 2 weeks away from CRUSH MS! 10:07
Dr. Jaime Imitola discusses how VISIBL-MS will increase doctors' and patients' awareness of the early signs of MS. 11:35
Share this episode 31:33
Have you downloaded the free RealTalk MS app? 31:53
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/358
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VISIBL-MS: A Bilingual Educational Framework To Increase Awareness of Early Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/13524585241228739
STUDY: Acute Clinical Events Identified as Relapses with Stable Magnetic Resonance Imaging in Multiple Sclerosis https://pubmed.ncbi.nlm.nih.gov/38949816
STUDY: Phase I Clinical Trial of Intracerebroventricular Transplantation of Allogeneic Neural Stem Cells in People with Progressive Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1934590923003934
STUDY: Inflammatory and Neurodegenerative Serum Protein Biomarkers Increase Sensitivity to Detect Clinical and Radiographic Disease Activity in Multiple Sclerosis https://nature.com/articles/s41467-024-48602-9
CRUSH MS: Tickets and Info https://crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 358 Guests: Dr. Jaime Imitola
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When it comes to living your best life when you're living with MS, the first step is to make smart lifestyle choices. Maintaining a healthy lifestyle doesn't require pills, injections, or infusions. And making smart lifestyle choices can make a real, measurable difference in your quality of life.
Joining me to talk about the benefits of maintaining a healthy lifestyle and share some tips and strategies for living your best life when you're living with MS is Dr. Lisa Doggett, a family and lifestyle medicine physician at the MS and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin.
Dr. Doggett was diagnosed with MS in 2009, and she’s the author of the memoir, ‘Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis’.
We'll also tell you about a research team that's looking to improve the way that stem cells are transplanted -- and why that's a good thing for people with MS.
We'll share the details behind the European Union's approval of a new Ocrevus formulation that makes the DMT much more patient-friendly.
You'll hear about the blood test for measuring a biomarker that can predict future MS disease worsening that has just gained approval in the European Union.
And we'll tell you where to find the video replay of Mobility Challenges in Progressive MS, the most recent webcast hosted by the International Progressive MS Alliance.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Lifestyle changes that will improve your quality of life :22
Researchers receive a grant to develop a better way to transplant stem cells 1:30
Subcutaneous Ocrevus has been approved in the European Union 3:50
Blood test to measure a biomarker that can predict future MS disease worsening receives approval in the European Union 5:35
Catch the video replay of the latest Progressive MS Alliance webcast 7:13
Dr. Lisa Doggett offers strategies for making lifestyle choices that will make a difference in your quality of life 8:20
Share this episode 26:50
Next Week: Dr. Jaime Imitola introduces us to VISIBL-MS 27:10
Have you downloaded the free RealTalk MS app? 27:39
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/357
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VIDEO REPLAY of the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://youtube.com/watch?v=YGA-2k9JCLg&t=14s
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 357 Guests: Dr. Lisa Doggett
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Over the course of her 39-year career with the National MS Society, including the past 13 years as its President and CEO, Cyndi Zagieboylo has been a driving force behind major initiatives that have fundamentally changed the MS treatment and research landscape. Creating a world where cures for MS are now within reach, Cyndi has led the work to make living with MS better today than it's ever been.
On July 1, Cyndi is retiring from her remarkable career at the National MS Society. I had an opportunity to talk with Cyndi about the progress she's witnessed and the progress she has driven in leading the MS Society. It's been a career filled with so many moments that are worthy of celebration, I am devoting this entire episode of RealTalk MS to one last conversation with Cyndi Zagieboylo.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: A final conversation with the National MS Society's President and CEO, Cyndi Zagieboylo :22
A look back at some of the most impactful initiatives that were led by Cyndi 1:43
Share this episode 30:39
Next Week: Lifestyle medicine physician Dr. Linda Doggett shares tips and strategies for making healthy lifestyle choices that will improve your quality of life 31:00
Have you downloaded the free RealTalk MS app? 31:50
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/356
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 356 Guest: Cyndi Zagieboylo
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Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home.
My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry.
We'll also tell you about the latest version of AlphaFold, a highly advanced artificial intelligence model designed to help scientists design new drugs and target disease more effectively.
Evidence shows that the Epstein-Barr Virus (EBV) triggers MS. We're reviewing the results of a study that may help scientists better understand the relationship between EBV and MS.
The International Progressive MS Alliance upcoming webcast, Mobility Challenges in Progressive MS, takes place this Thursday, June 20th. Find out where you can register and why you won't want to miss this!
And we're just 6 weeks away from Crush MS, a fundraising event in Napa Valley, California that raises money to support MS research. I'll be there, and I hope you can join me! We're sharing all the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The NARCOMS Patient Registry :22
The most advanced AI on earth is focused on discovering new medications 1:40
Researchers learn that Epstein-Barr Virus re-activates and drives inflammation during an MS relapse 4:00
The Progressive MS Alliance hosts a live global webcast this Thursday, June 20th! 7:17
Crush MS is just 6 weeks away 8:39
Dr. Robert Fox takes us on a deep dive into the NARCOMS patient registry 10:08
Share this episode 26:12
Next Week: A special conversation with National MS Society President and CEO, Cyndi Zagieboylo 26:33
Have you downloaded the free RealTalk MS app? 27:17
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Just copy this link & paste it into your text or email: https://realtalkms.com/355
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The NARCOMS Patient Registry https://www.narcoms.org
STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease https://nature.com/articles/s41564-024-01699-6
REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://msif.org/webcast-mobility
Get Tickets for Crush MS https://www.crushms.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 355 Guests: Dr. Robert Fox
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Two weeks ago, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. This is Part 2 of our coverage from that meeting.
In this episode, we're sharing our conversations with some of the experts who were at the meeting to present their research.
You'll hear the National MS Society's Executive Vice President for Advocacy and Healthcare Access, Bari Talente, share her thoughts on why getting early support when you've been diagnosed with MS can make a difference in how you begin your MS journey.
Dr. Nancy Sicotte talks about why early diagnosis and treatment are important in ensuring the best long-term patient outcomes.
Dr. Brian Sandroff asks and answers the question, "Does exercise improve cognitive function in MS?"
And Dr. Anthony Feinstein shares what he and his team have learned about how cannabis impacts people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Part 2 of our coverage of the CMSC Annual Meeting :22
National MS Society Executive Vice President for Advocacy and Healthcare Access, Bari Talente, discusses the importance of finding early support when you've been diagnosed with MS 1:18
Dr. Nancy Sicotte explains why early diagnosis and treatment make a difference in MS 8:57
Dr. Brian Sandroff poses (and answers) the question, "Doe exercise improve cognitive functioning in MS?" 17:11
Dr. Anthony Feinstein shares evidence gathered from his team's research into how cannabis impacts MS 23:58
Share this episode 38:13
Next Week: The North American Research Committe on Multiple Sclerosis (NARCOMS) with Managing Director, Dr. Robert Fox 38:34
Have you downloaded the free RealTalk MS app? 38:54
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Just copy this link & paste it into your text or email: https://realtalkms.com/354
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 353: From the Consortium of MS Centers 38th Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger https://realtalkms.com/353
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode 354 Guests: Bari Talente, Dr. Nancy Sicotte, Dr. Brian Sandroff, Dr. Anthony Feinstein
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Last week, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. Welcome to Part 1 of our coverage from that meeting.
In this episode, I'm talking with Dr. Kathy Zackowski, Associate Vice-President for Research at the National MS Society, and Dr. Zackowski is sharing some of the presentations that caught her attention.
Next, you'll hear my conversation with Dr. Stephen Krieger, a neurologist at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis. Dr. Krieger explains the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're reporting from the CMSC Annual Meeting :22
Dr. Kathy Zackowski shares some of the presentations that caught her attention 1:14
Dr. Stephen Krieger discusses the hidden side of MS, why, when it comes to treating MS, "detecting only what we measure" isn't enough, and why an EDSS of 0 is not normal 18:56
Share this episode 33:36
Next Week: Part 2 of our coverage from the CMSC Annual Meeting 33:56
Have you downloaded the free RealTalk MS app? 34:30
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Just copy this link & paste it into your text or email: https://realtalkms.com/353
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 353 Guests: Dr. Kathy Zackowski and Dr. Stephen Krieger
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May 30th is World MS Day, and we're taking this opportunity to look at some of the challenges faced by people with MS around the world. Global economics and the peculiarities of different healthcare systems make fundamental issues like access to quality healthcare and affordable MS medications difficult for many and impossible for some.
U.K. journalist and MS activist Rachel Horne joins me for a freewheeling conversation focused on the broad range of challenges that people with MS face every day.
We're also sharing details about the National MS Society's Black MS Experience Summit, which gets underway June 12th and 13th. Find out why you'll want to be part of this free virtual event.
We have a lot to talk about! Are you ready for RealTalk MS??!
The National MS Society's Black MS Experience Summit is happening June 12th and 13 :24
This Week: World MS Day is May 30th 2:07
Rachel Horne talks about some of the issues confronting people with MS around the world 8:10
Share this episode 26:51
Have you downloaded the free RealTalk MS app? 27:11
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Just copy this link & paste it into your text or email: https://realtalkms.com/352
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Black MS Experience Summit https://www.nationalmssociety.org/resources/get-support/education-programs-and-library/black-ms-experience
World MS Day https://worldmsday.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 352 Guests: Rachel Horne
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We've reached a moment in time when it seems impossible to avoid at least some level of stress in our lives. We also know that stress has been shown to make MS symptoms worse and even trigger relapses. We can't eliminate all the stress in our lives, so learning how to manage and minimize stress is an important part of living well with MS.
This week, Dr. Grace Tworek, a Clinical Health Psychologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, joins me to talk about best practices when it comes to managing stress when you're living with MS.
We're also sharing details about the $649,000 grant made by the National MS Society to support the development of an experimental remyelination treatment.
If MS is detected early -- before an individual experiences even a single symptom -- and that individual is treated aggressively with a high-efficacy disease-modifying therapy, could that individual lead a life without experiencing any symptoms of MS? We'll tell you how that scenario is playing out right now.
We'll tell you about research that revealed differences in the connections between nerve cells in the brain based upon biological sex.
And we'll share survey results that show people with MS may be so embarrassed about some of their symptoms that they aren't discussing them with their care team.
We have a lot to talk about! Are you ready for RealTalk MS??!
The complexity of the human brain :22
This Week: Managing stress when you're living with MS 2:08
National MS Society invests $649,000 in experimental remyelination treatment 2:57
Stopping MS before symptoms start 4:32
Study shows that connections between nerve cells vary by biological sex 6:30
Are people with MS too embarrassed to discuss some of their symptoms with their care team? 8:31
Dr. Grace Tworek discusses strategies to manage stress when you're affected by MS 11:44
Share this episode 27:27
Have you downloaded the free RealTalk MS app? 27:47
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/351
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
A Browsable Petascale Reconstruction of Human Cortex https://h01-release.storage.googleapis.com/landing.html
STUDY: Deep Learning with Diffusion MRI as In Vivo Microscope Reveals Sex-Related Differences in Human White Matter Microstructure https://www.nature.com/articles/s41598-024-60340-y
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode 351 Guests: Dr. Grace Tworek
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There are more than 20 disease-modifying therapies available to treat MS today. Some are considered high-efficacy, some are considered moderately effective, and each has its own risk profile and side effects to consider. So, how do you choose?
How much homework should someone living with MS do? Where should you look for reliable information? And what if you and your neurologist don't necessarily agree?
Joining me to talk about your role when it comes to choosing the right DMT through shared decision-making with your neurologist is Dr. Barbara Giesser. Dr. Giesser is an internationally recognized clinician and award-winning educator who has specialized in the care of people with multiple sclerosis since 1982, a full decade before there was even a single disease-modifying therapy available to treat MS.
Dunk MS takes place This Saturday, May 18th on the UCLA campus, at iconic Pauley Pavilion. And if you're in or around Southern California, you won't want to miss this unique event. We're sharing all the details, so don't miss my conversation with Dunk MS founder, Blake Arnet.
Since we're talking about shared decision-making this week, we're sharing details of a study that asked the question, "How much do people living with MS know about MS?"
And if you've found yourself worried about smoldering MS, you'll be pleased to learn that a recent study showed that sophisticated PET imaging is able to identify this hidden, persistent inflammation in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
350 Episodes! :22
This Week: Finding the right DMT through shared decision-making 1:04
Dunk MS is just days away! My conversation with Blake Arnet 2:31
How much do people living with MS know about MS? 10:57
PET imaging reveals persistent hidden inflammation in MS 15:37
Dr. Barbara Giesser discusses choosing the right disease-modifying therapy through shared decision-making with your neurologist 20:04
Share this episode 33:13
Have you downloaded the free RealTalk MS app? 33:33
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/350
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Get Your Tickets for Dunk MS https://dunkms.com
STUDY: A Systematic Review to Explore Patients' MS Knowledge and MS Risk Knowledge https://link.springer.com/article/10.1007/s10072-024-07541-5
STUDY: Glial Activity Load on PET Reveals Persistent "Smoldering" Inflammation in MS Despite Disease-Modifying Treatment https://journals.lww.com/nuclearmed/fulltext/2024/06000/glial_activity_load_on_pet_reveals_persistent.1.aspx
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 350 Guests: Blake Arnet and Dr. Barbara Giesser
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As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently.
Just a couple of weeks ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how these many and varied changes can impact MS care.
In Part 2 of our coverage, we're taking you back inside this workshop, where you'll hear from some of the top MS researchers and clinicians who participated in this important meeting.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We continue our coverage of the Aging and MS Workshop :22
Dr. Sarah Morrow and Dr. Yinan Zhang discuss survey results which showed what neurologists and other members of the MS care team see as "gaps" in delivering treatment to patients as they age with MS 1:45
Dr. Giuseppe Portillo describes how artificial intelligence can be used to analyze "brain gap" and predict future MS disease progression 13:03
Dr. John Corboy shares results from two studies that focused on discontinuation of disease-modifying therapy for patients over the age of 60 20:31
Kathy Smith talks about the importance of including older people living with MS in clinical research 31:00
Share this episode 42:43
Have you downloaded the free RealTalk MS app? 43:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/349
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) http://www.realtalkms.com/348
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 349 Guests: Dr. Sarah Morrow, Dr. Yinan Zhang, Dr. Giuseppe Portillo, Dr. John Corboy, and Kathy Smith
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As people age, their immune systems change. Their level of physical and cognitive reserve changes. They often develop additional health issues. They frequently experience changes in their mobility. And these are people who aren't living with MS.
When you combine the health issues related to aging with the health issues that are related to MS, you end up with a sum that is exponentially larger than its parts. And when you consider that there are more people living with MS who are over the age of 65 than there are people living with MS under the age of 45, it's not surprising that the subject of aging with MS has become an area of increasing interest among researchers, clinicians, and people affected by MS.
That's why, last week, the International Advisory Committee for Clinical Trials in Multiple Sclerosis invited a select group of 100 MS researchers and clinical specialists from around the world to participate in a three-day deep dive exploring aging and MS.
In Part 1 of our coverage, we're taking you inside this meeting, where you'll hear from some of the expert presenters who were in attendance.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the Aging & MS Workshop :22
Dr. Tim Coetzee shares some of the issues the meeting presenters and attendees will be focusing on 1:35
Dr. Jennifer Graves discusses the difference between chronological aging and biological aging, and how that difference impacts MS 9:29
Dr. Wallace Brownless talks about some of the challenges related to diagnosing and treating late-onset MS 14:33
Dr. Amit Bar-Or explains how the immune system changes over time, and how those changes can affect living with MS 21:36
Share this episode 28:04
Have you downloaded the free RealTalk MS app? 28:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/348
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 348 Guests: Dr. Tim Coetzee, Dr. Jennifer Graves, Dr. Wallace Brownlee, Dr. Amit Bar-Or
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Lower levels of Vitamin D have been associated with a higher risk of developing MS and an increase in MS disease activity. And, for years, scientists have worked to better understand the relationship between Vitamin D and MS.
Joining me to talk about the role that Vitamin D plays in MS is Dr. Ellen Mowry. Dr. Mowry is a Professor of Neurology and Epidemiology, and the Co-Director of the Multiple Sclerosis Precision Medicine Center of Excellence at Johns Hopkins University. Dr. Mowry is also one of the leading experts on Vitamin D and MS in the world.
The National MS Society's virtual MS Activist Rally is happening in just two days, on April 25th! We're sharing registration details.
We'll tell you about a scientific breakthrough that has identified a specific autoantibody signature that can accurately predict MS years before someone experiences any MS symptoms.
We're sharing details of a clinical trial that focused on the efficacy of Ocrevus in treating Black and Hispanic people living with MS. We'll also share the details of this trial's novel design that can serve as a blueprint for successfully engaging members of minority communities in future clinical research.
We'll explain one reason why we aren't hearing as much news about the benefits of using cannabis to treat MS symptoms, and why cannabis use may actually be creating a new set of problems for people living with MS.
And we're sharing study results that show that an artificial intelligence program may have a better bedside manner than your neurologist.
We have a lot to talk about! Are you ready for RealTalk MS??!
Don't miss it! The MS Activist Rally is happening on 4/25! :22
This Week: The relationship between Vitamin D and MS 2:50
Autoantibody signature predicts MS years before symtoms develop 3:45
Clinical trial results show that Black and Hispanic people with MS respond well to Ocrevus 7:58
Is cannabis working for people with MS? 11:13
Study results show that ChatGPT answers questions about MS with more empathy than neurologists 14:28
Dr. Ellen Mowry updates us on what the latest research is revealing about Vitamin D and MS 18:31
Share this episode 32:06
Have you downloaded the free RealTalk MS app? 32:26
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/347
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
STUDY: An Autoantibody Signature Predictive of Multiple Sclerosis https://www.nature.com/articles/s41591-024-02938-3
RealTalk MS Episode 346: Why Members of Minority Communities May Face a More Severe MS Disease Course with Dr. Annette Langer-Gould https://realtalkms.com/346
STUDY: ChatGPT vs Neurologists: A Cross-Sectional Study Investigating Preference, Satisfaction Ratings, and Perceived Empathy in Responses Among People Living with Multiple Sclerosis https://link.springer.com/article/10.1007/s00415-024-12328-x
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 347 Guest: Dr. Ellen Mowry
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In past episodes of this podcast, we've discussed disparities in healthcare. We've looked at evidence that shows members of historically underserved communities who are living with MS can face a more severe disease course. We've looked at studies that have shown some members of these racial and ethnic minority groups don't do as well on disease-modifying therapies, and their MS progresses more quickly.
It's often been speculated that the reason behind these disparities is based on genetics -- that members of minority communities who are living with MS are genetically predisposed to experiencing a more severe disease course.
My guest in this episode is Dr. Annette Langer-Gould, and Dr. Langer-Gould comes armed with evidence that points to a completely different set of answers for the cause of racial and ethnic disparities in MS disease severity and progression.
We're also sharing registration details for the National MS Society's MS Activist Rally on April 25th!
We'll tell you about an inverse vaccine that prevents the mouse model of MS (and we'll explain what an inverse vaccine is!)
You'll find out where you can find the just-released video progress report from the International Progressive MS Alliance.
We'll explain just-published results from an analysis that shows why anti-diabetic and weight-loss drugs like Ozempic, Jardiance, and Trulicity may be repurposed as MS therapies.
And we're sharing study results with both good news and not so great news when it comes to being diagnosed and treated for MS in a timely manner.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're exploring the reason that members of underserved minority populations who are living with MS often experience a more severe disease course :22
The MS Activist Rally is happening on 4/25! 1:28
An inverse vaccine prevents the mouse model of MS 3:49
The International Progressive MS Alliance has released their 2024 progress report 6:13
Can weight-loss drugs be repurposed as MS therapies? 7:33
A study shows that getting diagnosed and treated for MS is dependent upon your country's healthcare system 10:26
Dr. Annette Langer-Gould has a sobering answer as to why some members of minority communities who are living with MS experience a more severe disease course 14:48
Share this episode 31:31
Have you downloaded the free RealTalk MS app? 31:51
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/346
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
VIDEO: International Progressive MS Alliance 2024 Progress Report https://www.youtube.com/watch?v=4ojRaLp_J1w
STUDY: Exploring the Association Between Weight Loss-Inducing Medications and Multiple Sclerosis: Insights from the FDA Adverse Event Reporting System Database https://journals.sagepub.com/doi/10.1177/17562864241241383
STUDY: Disease-Modifying Therapy Initiation Patterns in Multiple Sclerosis in Three Large Populations https://journals.sagepub.com/doi/10.1177/17562864241233044
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RealTalk MS Episode 346 Guest: Dr. Annette Langer-Gould
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MS affects women almost 3 times more frequently than it affects men, which makes understanding how MS may impact other women's health issues a priority.
Dr. Rhonda Voskuhl and Dr. Anna Shah join me as we take a deep dive into both the research and clinical side of how MS affects women's health and how those other health issues may affect MS.
Dr. Shah is an Associate Professor of Neurology and Associate Clinic Director of Outpatient Neurology at the University of Colorado School of Medicine.
Dr. Voskuhl is the Director of the UCLA Multiple Sclerosis Program, she holds the Jack H. Skirball Chair in MS, she's a Professor in the UCLA Department of Neurology, and Dr. Voskuhl also serves as Faculty Neurologist of the UCLA Comprehensive Menopause Care Program.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into women's health and MS :22
Dr. Rhonda Voskuhl named the recipient of the 2024 John Dystel Prize for Multiple Sclerosis Research :52
Dr. Rhonda Voskuhl discusses her research looking at why MS affects men and women differently 2:32
Dr. Anna Shah discusses how MS can affect women's health issues and how those health issues can affect MS 13:21
Share this episode 32:40
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 345 Guests: Dr. Rhonda Voskuhl and Dr. Anna Shah
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If you're a regular listener, you've probably heard me say that the pace of scientific discovery is moving faster than ever before. Or you may have heard the National MS Society remind us that we've seen as many advances in MS research in the past 5 years as we have in the previous 70 years. Have you ever wondered why?
A major driver of this acceleration of discovery is the technology that allows scientists to analyze massive amounts of information looking for relationships or identifying characteristics that, without this technology, would be impossible to see.
This category of tech is commonly referred to as big data. And we're closer than we've ever been to understanding the biological complexities of multiple sclerosis because we've learned to harness the computing power that allows scientists to discover those very small needles among those very large haystacks.
My guest in this episode is Professor Sergio Baranzini. Professor Baranzini is this year's recipient of the Barancik Prize for Innovation in MS Research and he's someone who has successfully leveraged big data to drive big, game-changing discoveries in multiple sclerosis.
We'll also share some good news about MS research funding from the federal government.
We'll review newly published results from a study that has identified 3 subtypes of MS, each with a different disease trajectory.
We'll share evidence from a study that focused on whether people over the age of 50 with nonactive MS should discontinue their disease-modifying therapy.
And we'll tell you about the Canadian regulatory approval of a software-based medical device that can monitor MS disease activity by tracking eye movement -- all from an iPad that people with MS can use at home.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're saluting Professor Sergio Baranzini, this year's winner of the Barancik Prize :22
Congress provides $20 million in FY2024 funding for the MS Research Program 1:57
A German research team has identified 3 subtypes of MS based on their unique immune cell signature found in a blood sample 4:10
A French research team focused their study on whether people over the age of 50 with nonactive MS should discontinue their DMT. Here's what they discovered 8:58
Health Canada has approved ETNA-MS. A software-based medical device that can monitor MS disease activity by tracking eye movement 12:48
Professor Sergio Baranzini discusses how big data has fundamentally changed scientific research, and how he's using it to find cures for MS 16:44
Share this episode 32:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/344
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ
STUDY: Multiple Sclerosis Endophenotypes Identified by High-Dimensional Blood Signatures are Associated with Distinct Disease Trajectories https://science.org/doi/10.1126/scitranslmed.ade8560
STUDY: High-Efficacy Therapy Discontinuation vs Continuation in Patients 50 Years and Older with Nonactive MS https://jamanetwork.com/journals/jamaneurology/article-abstract/2816799
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RealTalk MS Episode 344 Guest: Professor Sergio Baranzini
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March 28th is Progressive MS Day, a day that offers an opportunity for people affected by MS, patient advocates, healthcare providers, governments, and industry to share stories online and show their support for people living with progressive forms of MS.
My wife, Jeanne, lived with progressive MS for 23 years, so this day holds a special significance for me. Joining me to talk about what Progressive MS Day is all about is my friend, Kevin Reid. Kevin was diagnosed with MS in 2002 and, for the past 10 years, he's been on a mission to crush MS.
As MS Awareness Month draws to a close, we're sharing a series of short videos featuring conversations I had with MS experts at the ECTRIMS congress. What makes this video series unique is that iConquer MS invited people living with MS to watch these videos. Then, I interviewed them to get their perspective on the topics the experts were discussing. It's the first time you'll not only hear from the experts, but you'll also get the thoughts and reactions of people who are living with MS.
We'll tell you about the neurostimulator that was just designated as a Breakthrough Device for promoting myelin repair.
We'll share the details of a newly announced Phase 2 clinical trial for a T-cell therapy for MS.
You'll hear about the study that identified a biomarker that reliably predicted the likelihood of future disease activity in people with MS.
And we'll tell you where you can catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: March 28th is Progressive MS Day :22
Have you seen the series of short videos featuring my conversations with MS experts at ECTRIMS along with the thoughts and reactions from people living with MS? 1:00
Catch the video replay of the 2024 ACTRIMS Forum Patient-Centered Webinars 1:57
FDA designates neurostimulator as a breakthrough device for promoting myelin repair in people living with relapsing-remitting MS 2:46
Biotech company PolTREG announces Phase 2 clinical trials to test their Tregs treatment for MS 5:28
Study shows neurofilament light chain levels can reliably predict future disease activity 7:10
Kevin Reid discusses the importance of Progressive MS Day and gives us a preview of CRUSH MS 10:35
Share this episode 28:09
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS https://youtu.be/eWoZLF4bZmo
VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study https://www.youtube.com/watch?v=UtGtCnNkYOY
VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions https://www.youtube.com/watch?v=J83jlqMbsZo
VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience https://www.youtube.com/watch?v=_fRLW69Xc1A
VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey https://www.youtube.com/watch?v=oZDdp8JumFg
VIDEO: ACTRIMS Forum 2024 Webcast Replays https://actrims.memberclicks.net/forum-patient-centered-webinars
STUDY: Prognostic Value of Serum Neurofilament Light Chain for Disease Activity and Worsening in Patients with Relapsing Remitting Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials https://pubmed.ncbi.nlm.nih.gov/35432382
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RealTalk MS Episode 343 Guest: Kevin Reid
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We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study.
Chiquita and Earl will discuss how they discovered the TEAAMS study, what motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them.
We'll also take you to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference.
It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS.
And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar :22
This Week: The patient perspective on participating in an MS research study 1:38
Live! From the Natinal MS Society's Public Policy Conference 2:28
People with MS weign in on the impact of several ECTRIMS presentations 10:17
Catch the video replay of the International Progressive MS Alliance webcast 11:35
Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study 12:11
Share this episode 27:18
Have you downloaded the free RealTalk MS app? 27:38
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Just copy this link & paste it into your text or email: https://realtalkms.com/342
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index
VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS https://youtu.be/eWoZLF4bZmo
VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study https://www.youtube.com/watch?v=UtGtCnNkYOY
VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of managing their MS along with additional health conditions https://www.youtube.com/watch?v=J83jlqMbsZo
VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience https://www.youtube.com/watch?v=_fRLW69Xc1A
VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey https://www.youtube.com/watch?v=oZDdp8JumFg
VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS https://www.youtube.com/watch?v=W4hxtl38MBQ
The TEAAMS Study https://projectteaams.ahs.uic.edu
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RealTalk MS Episode 342 Guests: Chiquita Shepard-Knight and Earl Sneed
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Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue.
Dr. Shiv Saidha joins me as we take a deep dive into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into managing MS-related vision issues :22
Doctor Shiv Saidha discusses how to best manage MS-related vision issues 1:17
Share this episode 29:44
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Just copy this link & paste it into your text or email: https://realtalkms.com/341
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 341 Guest: Dr. Shiv Saidha
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When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy.
Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially life-changing rehabilitation tools for people living with MS.
Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field.
Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're taking a deep dive into next-generation tools for MS rehabilitation :22
Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation 1:44
Share this episode 29:48
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 340 Guest: Dr. Deborah Backus and Dr. Brad Willingham
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A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity, or PIRA, means and how it may or may not impact your MS journey.
And if you are someone whose MS seems relatively stable and well-managed, you may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS.
Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.
We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy.
We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce.
We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process.
And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: What is "Progression Independent of Relapse Activity"? 1:31
STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS 3:02
STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS 6:49
An AI tool has been developed that can predict an individual's MS disease course 9:17
SURVEY: Some people have mixed feelings about using AI in diagnosing illness 11:47
STUDY: Caffeine is shown to improve balance and mobility in people with MS 14:38
Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome 16:47
Share this episode 28:15
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Just copy this link & paste it into your text or email: https://realtalkms.com/339
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784
STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway https://journals.sagepub.com/doi/10.1177/13524585241231665
STUDY: Predicting Disease Severity in Multiple Sclerosis Using Multimodal Data and Machine Learning https://link.springer.com/article/10.1007/s00415-023-12132-z
SURVEY: Consumer Perceptions of Second Opinions and Concierge Health Services https://clinicbyclevelandclinic.com/consumer-perceptions-report
STUDY: Potential Efficacy of Caffeine Ingestion on Balance and Mobility in Patients with Multiple Sclerosis: Preliminary Evidence from a Single-Arm Pilot Clinical Trial https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0297235
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RealTalk MS Episode 339 Guest: Professor Alan Thompson
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You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important.
The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern.
We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression.
We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance.
And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing.
We have a lot to talk about! Are you ready for RealTalk MS??!
Jeanne's Story :22
This Week: Inside MS advocacy and this year's Public Policy Conference 8:36
Experts publish an update on progressive MS research, identify lessons learned, and call out the remaining challenges 9:35
The International Progressive MS Alliance hosts a global webcast this Thursday 17:22
MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference 18:54
Share this episode 31:51
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Just copy this link & paste it into your text or email: https://realtalkms.com/338
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society: Become an MS Activist https://nationalmssociety.org/advocacy
PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis https://realtalkms.com/193
WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research https://www.msif.org/treatments-webcast/
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 338 Guest: Steffany Stern
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We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions.
Is there a need to stay on disease-modifying therapy after the age of 60? How do we know whether a new symptom is a symptom of MS or a symptom of aging? Does an additional age-related health condition make treating MS more difficult? Does treating MS make treating that new health condition more difficult? How can we best offset the social isolation that's often associated with MS and with aging?
This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Aging with MS :22
Dr. Aaron Boster tackles the multifaceted subject of aging with MS 1:59
Share this episode 38:09
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Just copy this link & paste it into your text or email: https://realtalkms.com/337
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 337 Guest: Dr. Aaron Boster
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When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead.
This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally, wrote the book for the National MS Society on applying for SSDI benefits.
We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in.
We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!)
We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA.
We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy.
And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How to apply for Social Security Disability Insurance benefits :22
This year's recipient of the Barancik Prize for Innovation in MS research 1:58
Real progress reported in efforts to penetrate the blood brain barrier 7:17
FDA gives Fast-Track designation to CAR-T cell therapy for MS 10:03
STUDY: Having a university education makes it more likely that someone with MS will be on a DMT 13:04
STUDY: Geographic proximity to MS care in the U.S. is far from equal 15:04
Disability law expert Jamie Hall discusses how to apply for SSDI benefits 19:29
Share this episode 38:01
Have you downloaded the free RealTalk MS app? 38:21
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Just copy this link & paste it into your text or email: https://realtalkms.com/336
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf
Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509
STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register https://journals.sagepub.com/doi/10.1177/13524585231221411
STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States https://www.neurology.org/doi/10.1212/WNL.0000000000207916
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 336 Guest: Jamie Hall, Esq.
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This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.
In this special episode of RealTalk MS, Professor Alice Laroni and Rachel Horne join me to explore what happens at the time someone receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis.
We're also exploring what should be happening at the time of diagnosis and what needs to come next.
Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy.
Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology.
Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're employed, you absolutely need to know and understand your rights in the workplace.
MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace.
I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???)
I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them.
We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!)
We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community)
Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost.
We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research.
And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Successfully navigating the health insurance maze :22
Why the MS Navigators are the gold standard when it comes to support for people affected by MS :56
Everything you need to know about the RealTalk MS show notes 2:12
STUDY: A wheat-free diet may reduce MS severity 5:28
Experts call for a new framework for describing Parkinson's Disease 8:31
A test to determine who is at high risk for contracting PML is available...at no cost 11:36
STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish 14:08
The Spanish Society of Neurology has updated its guidelines for treating MS 15:42
MS Navigator Christina Forster discusses your rights in the workplace 19:35
Share this episode 30:37
Have you downloaded the free RealTalk MS app? 30:57
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Just copy this link & paste it into your text or email: https://realtalkms.com/335
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Contact an MS Navigator Phone: 1-800-344-4867 Web via chat: https://nationalmssociety.org Email: contactusnmss@nmss.org
STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study https://journals.sagepub.com/doi/10.1177/17562864231170928
Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoencephalopathy_genetic_risk_variants_for_pharmacovigilance_of_immunosuppressive_therapies
No Cost PML Risk Genetic Test https://pmlrisktest.org
STUDY: Synaptic Input and Ca2+ Activity in Zebrafish Oligdodendrocyte Precursor Cells Contribute to Myelin Sheath Formation https://www.nature.com/articles/s41593-023-01553-8
Consensus Statement of the Spanish Society of Neurology on the Treatment of Multiple Sclerosis and Holistic Patient Management in 2023 https://www.sciencedirect.com/science/article/pii/S2173580824000191
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 335 Guest: Christina Forster
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Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment.
MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises."
We're also sharing study results that can help you get the most benefit from your everyday physical activity.
We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation.
We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS.
We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies.
And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Successfully navigating the health insurance maze :22
STUDY: The benefit of physical activity lies in step rate and not step count 1:42
Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation 3:47
STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS 5:41
You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company 8:50
Generics for Tecfidera have been delayed at least one year in Europe 10:47
MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs 12:03
Share this episode 26:46
Have you downloaded the free RealTalk MS app? 27:07
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/334
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume https://pubmed.ncbi.nlm.nih.gov/38214757
Myrobalan Therapeutics https://myrotx.com
STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969
The Mark Cuban Cost Plus Drug Company https://costplusdrugs.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 334 Guest: Carla Turechek
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You've just had your appointment with your neurologist or MS Specialist and you're on your way home, feeling like you weren't heard. Maybe there wasn't sufficient time. Or it might feel like your opinion simply isn't valued. Your frustration could even be the result of language issues and cultural barriers that make communication difficult. Whatever the reason, it doesn't have to be this way.
Dr. Luis Manrique-Trujillo joins me this week to share tips and strategies that will improve the quality of communication between you and every member of your MS care team. Dr. Manrique-Trujillo is a neurologist specializing in neuroimmunology and multiple sclerosis at MedStar Georgetown University Hospital in Washington, D.C.
We're also sharing some fascinating research that traces the gene variants that increase someone's risk of developing MS all the way back to the Bronze Age.
We'll tell you about a small study that may explain how the Epstein-Barr Virus triggers MS.
We'll tell you about a class-action lawsuit that accuses Pharmacy Benefit Managers of illegal collusion and price-fixing. (And we'll explain why this lawsuit could be a huge step toward lowering the cost of your prescription medications)
And we're sharing our plans for RealTalk MS in 2024.
We have a lot to talk about! Are you ready for RealTalk MS??!
My New Year's Resolutions for RealTalk MS :22
This Week: Improving communication between you and your neurologist 4:59
STUDY: Ancient DNA reveals how MS risk genes arose and spread across Europe 5:59
STUDY: EBV-specific T-cells may play a key role in developing MS 9:36
An important class-action lawsuit has been filed against Pharmacy Benefit Mangers 11:18
Dr. Luis Manrique-Trujillo shares strategies for improving communication between you and your neurologist 15:41
Share this episode 34:19
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Just copy this link & paste it into your text or email: https://realtalkms.com/333
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations https://www.nature.com/articles/s41586-023-06618-z
STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells https://pnas.org/doi/abs/10.1073/pnas.2315857121
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 333 Guest: Dr. Luis Manrique-Trujillo
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If you remember your Economics 101 class, the introduction of generic and biosimilar drugs should cause prices to drop. Yet, when it comes to MS disease-modifying therapies that isn't always the case.
MS Navigator Robin LaRue joins me this week to discuss how to manage the sometimes crazy costs of MS prescription medications.
We're also sharing results from a study that show there is absolutely no association between consuming dairy and gluten products and MS disease activity.
We'll tell you about two different studies that suggest that non-pharmaceutical interventions may be effective in lessening MS fatigue.
We're sharing results from a trial that reveal an innovative approach to supporting MS caregivers.
And we'll tell you about 4.6 million euro in new funding from the International Progressive MS Alliance that will go toward research focused on developing new treatments for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing the cost of MS medications :22
STUDY: No association between consuming dairy and gluten products and MS disease activity 1:42
STUDY: SMS-messaging is shown to improve MS-related fatigue 4:50
STUDY: Talk therapy is shown to improve MS-related fatigue 8:36
STUDY: Remote coaching and online information improves the well-being of MS caregivers 10:43
International Progressive MS Alliance announces new research funding 13:32
MS Navigator Robin LaRue discusses how to manage the cost of MS prescription medications 15:57
Share this episode 27:48
Have you downloaded the free RealTalk MS app? 28:09
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Just copy this link & paste it into your text or email: https://realtalkms.com/332
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Dairy and Gluten in Disease Activity in Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/20552173231218107
STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study https://sciencedirect.com/science/article/abs/pii/S1936657423001310?via%3Dihub
STUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study https://journals.sagepub.com/doi/full/10.1177/13524585231213258
STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial https://meridian.allenpress.com/ijmsc/article/25/6/252/495534/Effect-of-2-Arm-Intervention-on-Emotional-Outcomes
International Progressive MS Alliance https://progressivemsalliance.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 332 Guest: Robin LaRue
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This is the week that a lot of us make resolutions for the coming year. And I'm hoping that after you hear my conversation with Dr. Claire Riley, many of you will resolve to become donors to the National Multiple Sclerosis Brain Bank.
Resolving to donate brain and tissue to the National MS Brain Bank is a new year's resolution that goes far beyond the standard eat better and exercise more promises that so many of us make to ourselves every year. It's deeply meaningful, profoundly personal, and, as Dr. Riley describes it, it's a heroic step in choosing to play an important role in curing MS.
We're also sharing the details about a partial hold that the FDA has placed on another clinical trial for an experimental MS disease-modifying therapy.
And we'll share some potentially disturbing news about how artificial intelligence is being leveraged to deny patients medically necessary care.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Becoming a donor to the National MS Brain Bank :23
FDA puts a partial hold on Phase 3 clinical trial investigating Fenebrutinib 1:23
Are health insurers using AI for all the wrong reasons? 4:49
Dr. Claire Riley discusses why you should consider being a donor to the National MS Brain Bank 8:09
Share this episode 28:40
Have you downloaded the free RealTalk MS app? 29:01
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Just copy this link & paste it into your text or email: https://realtalkms.com/331
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The National Multiple Sclerosis Brain Bank https://msbraindonation.org
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 331 Guests: Dr. Claire Riley
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This week, I'm revisiting the proposal from the International Advisory Committee on Clinical Trials in MS that recommended adopting a new framework that leverages what scientists are continuing to learn about MS and redefines how we talk about MS, how we research MS, how we diagnose MS, and how we treat MS. This proposed framework holds the promise of taking MS care to the next level.
This new framework was first proposed in a paper published in November 2022, and last January, I spoke with the lead author of that paper, Professor Tanja Kuhlmann. We discussed why an international panel of distinguished MS experts was recommending changing something that has been in place for decades.
The following week, I reached out to the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, and we talked about how this new framework for describing MS would impact people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Revisiting the proposed framework for describing MS :22
Prof. Tanja Kuhlmann discusses why this new framework is necessary 1:46
Dr. Tim Coetzee talks about how this new framework will impact people living with MS 14:49
Share this episode 36:25
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Just copy this link & paste it into your text or email: https://realtalkms.com/330
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 330 Guests: Prof. Tanja Kuhlmann and Dr. Tim Coetzee
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The holiday season provides me with an opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes of the year to revisit the most compelling,and important conversations that I've had over the past year. This week, I'm revisiting the conversations I had at the Pathways To Cures Global Summit that took place in New York last May.
The National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.
I had the opportunity to speak with several of the top MS experts in the world at this meeting and, collectively, these are the conversations that have resonated with me all year long.
We have a lot to talk about! Are you ready for RealTalk MS??!
Happy Holidays! :22
This Week: Revisiting the Pathways to Cures Global Summit :54
My conversation with a distinguished group of CEOs representing 5 major MS Societies 2:55
Dr. Tim Coetzee discusses the current state of MS care and the work ahead 9:11
Kathy Smith shares her perspective on the Pathways to Cures Global Summit 13:54
Dr. Anne-Katrin Probstel talks about stopping MS 20:26
Dr. Naila Makhami discusses detecting MS early 31:36
Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways to Cures global research initiative 35:53
Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways to Cures initiative doesn't leave anyone behind 41:11
Share this episode 47:21
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Just copy this link & paste it into your text or email: https://realtalkms.com/329
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Learn more about Pathways To Cures https://www.nationalmssociety.org/pathways-to-cures
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode 329 Guests: Cyndi Zagieboylo, Nick Moberly, Klaus Hom, Rohan Greenland, Dr. Pamela Valentine, Dr. Tim Coetzee, Kathy Smith, Dr. Anna-Katrin Probstel, Dr. Naila Makhami, Dr. Daniel Ontaneda, Dr. Mitzi Joi Williams
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This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.
In this special episode of RealTalk MS, we're exploring what the invisible symptoms of MS are, and how to best empower people living with MS to talk about them with their healthcare team.
Professor Klaus Schmierer is a Professor of Neurology at the Blizard Institute, Queen Mary's Univerrsity of London and a Consultant Neurologist at the Royal London Hospital, which is part of Barts Health NHS Trust in the U.K. Professor Schmierer has a keen interest in MS and focuses his research on the underlying mechanisms of the disease and how to improve diagnosis with imaging tools, such as MRI.
Jane Shanahan is a patient advocate who was diagnosed with MS in 2016. Jane lives with her husband and two children. She has developed an interest in better understanding MS, as well as educating her family, friends, colleagues, and others about the disease.
Both Professor Schmierer and Jane are active members of the MS in the 21st Century initiative. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Cognitive dysfunction is a common symptom of multiple sclerosis, affecting more than half of the people living with MS. While cognitive issues like changes in memory, difficulty maintaining attention, slower information processing speed and executive function may not be among the most disabling symptoms of MS, they may be among the most disconcerting symptoms.
Whether it's your short-term memory, the ability to find your way to a familiar destination that you've gone to hundreds of times, or your ability to follow conversations with friends or business colleagues, these are the kinds of real-world situations that can bring someone to a hard stop, recognizing that they're changing in profound ways that aren't outwardly apparent. And that's a scary feeling.
Fortunately, researchers are making real progress in developing ways for people living with MS to improve their cognition. This week, Dr. Nancy Chiaravalloti joins me to talk about what researchers are learning and what types of cognitive rehabilitation are available today.
Dr. Chiaravalloti is the Director of the Center for Neuropsychology and Neuroscience Research and the Center for Traumatic Brain Injury Research at Kessler Foundation. Dr. Chiaravalloti's research is focused on ways to stimulate new learning, memory, and processing speed.
We're also sharing some promising results from a preclinical study of an investigational Epstein-Barr Virus vaccine (And we'll explain why this is so important to the MS community!).
Dr. Nuriel Moghavem will take us through a day in the life of an MS Fellow.
We'll share the disappointing results of the Phase 3 clinical trial for Evobrutinib.
And we'll tell you about super-small biological robots that seem capable of doing some amazing things -- including encouraging the growth of healthy nerve cells to replace damaged nerve cells.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Cognitive Rehabilition :22
Promising news from a preclinical study of an investigational EBV vaccine 2:08
A day in the life of an MS Fellow with Dr. Nuriel Moghavem 4:21
Evobrutinib Phase 3 clinical trial has failed to meet its end points 17:19
Biological robots assemble into a "superbot" and encourage the growth of healthy nerve cells 18:28
Dr. Nancy Chiaravalloti discusses breakthrough treatment for cognitive dysfunction in MS 21:19
Share this episode 31:48
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Motile Living Biobots Self-Construct from Adult Human Somatic Progenitor Seed Cells https://onlinelibrary.wiley.com/doi/10.1002/advs.202303575
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RealTalk MS Episode 328 Guests: Dr. Nuriel Moghavem and Dr. Nancy Chiaravalloti
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A growing number of people living with MS are turning to cannabis for symptom management. But which MS symptoms have responded to being treated with cannabis? Where should someone buy medical cannabis? And is using medical cannabis even legal?
Dr. Michelle Cameron returns to the podcast to discuss the risks and benefits of using cannabis for symptom management. Dr. Cameron is a neurologist and physical therapist, as well as a professor in the Department of Neurology at Oregon Health & Science University.
We're also sharing some long overdue good news from United Airlines for passengers who use wheelchairs.
We'll tell you about the first adaptive clinical trial for people living with progressive MS in Australia.
We'll give you the details of the FDA's clearance of an artificial intelligence platform designed to analyze MRI scans to detect and monitor MS disease activity.
And we're sharing promising results from a Phase 1 clinical trial that focused on using neural stem cells to stop disease progression among people living with secondary progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Cannabis and MS :22
United promises friendlier skies for wheelchair users 1:04
PLATYPUS adaptive clinical trial to begin in Australia 3:47
FDA approves artificial intelligence platform for detecting MS disease activity in MRI scans 5:34
Neural stem cell Phase 1 clinical trial shows encouraging progress 6:47
Dr. Michelle Cameron discusses the risks and benefits of using cannabis to manage MS symptoms 9:07
Share this episode 24:01
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Just copy this link & paste it into your text or email: https://realtalkms.com/327
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Email: jon@realtalkms.com Phone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Phase 1 Clinical Trial of Intracerebroventricular Transplantation of Allogenic Neural Stem Cells in People with Progressive Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1934590923003934
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RealTalk MS Episode 327 Guest: Dr. Michelle Cameron
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Chris Holland had a successful career working as a paralegal when he was diagnosed with MS in 2004. And, while everyone reacts differently to being diagnosed with MS, no one could have predicted what happened next, as Chris lost everything battling demons he never imagined he would ever face.
But it would be a mistake betting against Chris Holland's resilience. Bouncing back, Chris decided to pursue his lifelong dream of becoming a chef. Today, Chris is a three-time Food Network Chopped champion and the owner and executive chef at Kantina, in Sparkill, New York.
This week, Chris joins me to share a story with a happy ending that almost wasn't.
November is National Family Caregivers Month, which seems to be the perfect time for iConquer MS to expand its community to include MS caregivers. We're sharing all the details of the newly launched iConquer MS Caregivers initiative.
It's impossible to discuss caregiving without mentioning the lifelong contributions made by former First Lady Rosalynn Carter. This week, we're remembering Mrs. Carter and reflecting on her legacy.
And we'll tell you how Infusion Day actually became Spa Day in Dawson City, Yukon.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Chris Holland shares his remarkable story of resilience :22
November is National Family Caregivers Month 1:22
Remembering Former First Lady Rosalynn Carter 1:52
If you're caring for a loved one with MS, iConquer MS has set out a welcome mat 3:07
Infusion Day is now Spa Day in Dawson City, Yukon 7:13
Chris Holland talks about how he barely made it all the way back 9:34
Share this episode 28:24
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
iConquer MS Caregivers https://iconquerms.org/caregivers
PAPER: Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Caregiver Protocol https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis
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RealTalk MS Episode 326 Guest: Chris Holland
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According to the CDC, 36 million falls are reported each year, resulting in 3 million adults being transported to the Emergency Room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and 30% fall multiple times.
As falls at home are common, occupational therapist Tracy Carrasco joins me to share tips and strategies for making your home safe and accessible.
We're also sharing a research roundup featuring results from a few different clinical trials that are focused on the impact of diet on MS. And that includes the Swank diet, the Wahls diet, the Mediterranean diet, and a simple low-fat diet.
We'll tell you about a novel study that explored the economic impact of an Epstein-Barr Virus vaccine on the cost of MS care in Australia.
If you're living with MS, we have your invitation to participate in the Patient Reported Outcomes for Multiple Sclerosis (PROMS) initiative survey.
And we'll tell you how you can catch the video replay of the International Progressive MS Alliance global webcast on research and treatment for cognitive challenges in progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Some of the things I'm thankful for :22
Research Roundup: The impact of diet on MS 2:40
Survey results show how an EBV vaccine could impact the cost of MS care in Australia 9:03
If you're living with MS, here's your invitation to participate in the PROMS initiative online survey 12:22
How to catch the video replay of the International Progressive MS Alliance global webcast about research and treatment for cognitive challenges in progressive MS 13:38
Tracy Carrasco shares tips for making your home safe and accessible 15:25
Share this episode 27:26
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: A Low-Fat Diet Improves Fatigue in Multiple Sclerosis: Results from a Randomized Controlled Trial https://journals.sagepub.com/doi/10.1177/13524585231208330
STUDY: Diet-Induced Changes in Functional Disability are Mediated by Fatigue in Relapsing-Remitting Multiple Sclerosis: A Secondary Analysis of the WAVES Randomized Parallel-Arm Trial https://journals.sagepub.com/doi/full/10.1177/20552173231209147
STUDY: Exploring the Cost-Effectiveness of EBV Vaccination to Prevent Multiple Sclerosisin an Australian Setting https://jnnp.bmj.com/content/early/2023/11/02/jnnp-2023-332161
PARTICIPATE: The PROMS Initiative Survey https://proms-initiative.org/survey-proms
VIDEO: Cognitive Challenges in Progressive MS https://youtube.com/watch?v=bN26GrRZMts
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RealTalk MS Episode 325 Guest: Tracy Carrasco
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MS is misdiagnosed too often, which leaves some people who don't have MS receiving expensive disease-modifying therapy that they don't need, while leaving other people who do have MS still not receiving treatment with a disease-modifying therapy that will slow disability progression and preserve their quality of life longer.
My guest, Dr. Andrew Solomon, is the lead author of a paper published by a team of international experts that provides updated guidance for healthcare professionals on clinical approaches to diagnosing MS. Dr. Solomon joins me to discuss why MS can be difficult to diagnose and how that situation can be improved upon.
We're also sharing the results of a study that showed how neurofilament light chain levels in the blood can predict MS disability progression one or two years before that worsening occurs.
For the past five years, we've been following the path of an investigative stem cell therapy through clinical trials. We'll tell you why the company behind this therapy announced it was stopping its Phase 2 trial.
If you're a female living with MS, we're sharing an invitation for you to participate in an important online survey about a topic that's too often overlooked.
And we'll tell you about the results of a study that underscore the value and importance of staying on your disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The risks of misdiagnosing MS :22
Results from a study show that neurofilament light chain level can predict future disability progression 1:37
We've been following an investigative stem cell therapy since 2018. Now, the company developing this therapy is ending the Phase 2 clinical trial 4:59
If you're a female living with MS, we have an invitation for you to participate in an important survey 7:15
Study results underscore the importance of staying on your disease-modifying therapy 9:01
Dr. Andrew Solomon discusses why MS is difficult to diagnose and what experts are doing about that 12:54
Share this episode 30:41
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Just copy this link & paste it into your text or email: https://realtalkms.com/324
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Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Neurofilament Light Chain Elevation and Disability Progression in Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/article-abstract/2811628
SURVEY: Patient Education Preferences Regarding Sexual Health in Women with Multiple Sclerosis https://openredcap.nyumc.org/apps/redcap/surveys/?s=D7L4NKPWMJA98RXP
STUDY: Impact of Adherence to Disease-Modifying Drugs in Multiple Sclerosis: A Study on Italian Real-World Data https://www.sciencedirect.com/science/article/abs/pii/S2211034823005953
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RealTalk MS Episode 324 Guest: Dr. Andrew Solomon
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More than 70,000 U.S. veterans are living with MS. That's why the only federal funding specifically earmarked for MS research comes from the U.S. Department of Defense. It's why the U.S. Department of Veterans Affairs has established the Multiple Sclerosis Centers of Excellence. And it's why, in 2019, the National MS Society established a strategic partnership with the U.S. Department of Veterans Affairs.
This week, we're saluting the men and women of our armed services, and we're highlighting some of the resources available to U.S. veterans who are living with MS.
Izzy Abbass, the Co-Chair of the Paralyzed Veterans of America MS Committee, joins me to discuss all the ways the PVA assists U.S. veterans in obtaining their VA benefits.
We're also sharing the results of a study that compared the efficacy of being treated with autologous hematopoietic stem cell transplantation (aHSCT) and being treated with a high-efficacy disease-modifying therapy.
We'll tell you about the results of a study that may begin to explain why African Americans who are living with MS often experience a more severe disease course.
We'll give you the details about where and how to register for this Thursday's International Progressive MS Alliance's global webcast that's focused on treatments and new research for cognitive challenges in progressive MS.
And actress Jamie-Lynn Sigler is also joining me this week to talk about her MS journey and to share some news about a new project that she has developed for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Resources for U.S. Veterans living with MS :22
My guest, Izzy Abbass, explains how the PVA assists U.S. Veterans with MS in receiving their VA benefits 2:41
A study compared the efficacy of autologous hematopoietic stem cell transplantation (aHSCT) with a high-efficacy disease-modifying therapy 11:21
Results of a study may begin to explain why African Americans who are living with MS often experience a higher level of disease activity and faster disability progression 14:36
This Thursday, the International Progressive MS Alliance is hosting a global webcast exploring treatments and research focused on cognitive challenges in progressive MS 17:31
Jamie-Lynn Sigler discusses her new guide for people living with MS 19:13
Share this episode 30:25
Have you downloaded the free RealTalk MS app? 30:45
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Just copy this link & paste it into your text or email: https://realtalkms.com/323
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society: Resources for U.S. Veterans with Multiple Sclerosis https://nationalmssociety.org/Resources-Support/Find-Support/Veterans-with-Multiple-Sclerosis
U.S. Department of Veteran Affairs: Multiple Sclerosis Centers of Excellence https://www.va.gov/ms
Paralyzed Veterans of America: Multiple Sclerosis Resources https://pva.org/research-resources/multiple-sclerosis
STUDY: Autologous Hematopoietic Stem Cell Transplantation is Superior to Alemtuzumab in Patients with Highly Active Relapsing Multiple Sclerosis and Severe Disability https://sciencedirect.com/science/article/pii/S2211034823005977
STUDY: African American Patients with Multiple Sclerosis (MS) Have Higher Proportions of CD19+ and CD20+ B-Cell Lineage Cells in Their Cerebrospinal Fluid than White MS Patients https://sciencedirect.com/science/article/abs/pii/S2211034823005485
REGISTER for Thursday's Global Webcast on Cognitive Challenges in Progressive MS https://msif.org/cognitive-webcast
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 323 Guests: Izzy Abbass and Jamie-Lynn Sigler
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Rachel Horne is a journalist who was diagnosed with MS in 2009. Since then, Rachel has developed a first-hand understanding of the knowledge gaps that remain when it comes to understanding the impact of MS on women's health and the impact of women's health issues on MS.
As Rachel reviewed MS research, she also observed that when it came to acknowledging outstanding MS research, it was rare that a female researcher was singled out to receive recognition for their work. This year, Rachel took action and did something about this unbalanced situation, establishing the Rachel Horne Prize for Women's Research in MS.
Dr. Rhonda Voskuhl has dedicated much of her career to improving our understanding of why MS affects men and women differently. Dr. Voskuhl was honored at the recent 2023 joint ECTRIMS-ACTRIMS meeting as the first recipient of the Rachel Horne Prize for Women's Research in MS.
I met up with Rachel Horne and Dr. Rhonda Voskuhl at the 2023 joint ECTRIMS-ACTRIMS meeting, and you won't want to miss our conversation.
We're also sharing an update on an investigational disease-modifying therapy for people with nonactive secondary progressive MS that's administered at home through a nasal spray.
We'll tell you how artificial intelligence is changing the way that MRI scans are analyzed. And we'll explain why that's a good thing for people living with MS.
And we're sharing the results of a study that demonstrates how obesity impacts symptom severity and quality of life for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Women's Research in MS :22
An investigational DMT for people with nonactive secondary progressive MS that's administered at home through a nasal spray 2:35
How artificial intelligence is changing MRI analysis for people living with MS 4:50
How obesity impacts symptom severity and quality of life in people living with MS 6:48
Rachel Horne and Dr. Rhonda Voskuhl discuss research into how MS impacts women's health issues and how women's health issues impact their MS 9:44
Share this episode 32:06
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS ECTRIMS EXTRA with Dr. Jiwon Oh https://realtalkms.com/ectrims2301
RealTalk MS ECTRIMS EXTRA with Dr. Anthony Feinstein https://realtalkms.com/ectrims2302
RealTalk MS ECTRIMS EXTRA with Dr. Annette Langer-Gould https://realtalkms.com/ectrims2303
RealTalk MS ECTRIMS EXTRA with Dr. Daniel Ontaneda https://realtalkms.com/ectrims2304
RealTalk MS ECTRIMS EXTRA with Dr. Robert Motl https://realtalkms.com/2305
ECTRIMS PRESENTATION: Obesity Negatively Affects Disease Progression, Cognitive Functioning, and Quality of Life in People with Multiple Sclerosis https://s3.eu-central-1.amazonaws.com/m-anage.com.storage.congrex/abstracts_ectrims2023/146956.pdf
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RealTalk MS Episode 322 Guests: Rachel Horne and Dr. Rhonda Voskuhl
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With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Robert Motl.
Dr. Motl is a professor in the department of Kinesiology and Nutrition, and a professor in the department of Rehabilitation Sciences at the University of Illinois Chicago. Dr. Motl is responsible for generating much of the foundational research validating the benefits of common physical activity in people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
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ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS ECTRIMS Extra with Dr. Robert Motl Guest: Dr. Robert Motl
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With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Daniel Ontaneda.
Dr. Ontaneda is a neurologist at the Cleveland Clinic Neurological Institute's Mellen Center for Multiple Sclerosis and, while attending the ECTRIMS-ACTRIMS meeting, Dr. Ontaneda co-chaired a scientific session on artificial intelligence in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2304
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Daniel Ontaneda Guest: Dr. Daniel Ontaneda
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With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Annette Langer-Gould.
Dr. Langer-Gould is an MS Specialist at Kaiser-Permanente, and while at the ECTRIMS-ACTRIMS meeting, she co-chaired a session on MS and comorbidities.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2303
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Annette Langer-Gould Guest: Dr. Annette Langer-Gould
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With more than 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Anthony Feinstein.
Dr. Feinstein is a Professor of Psychiatry at the University of Toronto, and his expertise is in the neuropsychiatry of multiple sclerosis. Dr. Feinstein has studied behavioral disorders in people living with MS for 26 years. He also maintains a busy clinical practice in which over 80% of the patients are people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2302
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Extra with Dr. Anthony Feinstein Guest: Dr. Anthony Feinstein
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This week, we're sharing more from the 2023 joint ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) annual meeting.
What if we could identify MS before anyone experienced any of the typical clinical symptoms? Would treating that person with a high-efficacy disease-modifying therapy prevent the clinical symptoms of MS from even developing? Those are the questions that make the study of the MS prodrome so fascinating and important. At the joint ECTRIMS-ACTRIMS meeting, I met up with one of the foremost experts on the prodromal phase of MS, Dr. Helen Tremlett, who shared an update on what she's continuing to learn about the MS prodrome.
We'll also tell you about Dr. Jeffrey Huang's work in developing an experimental drug that may stop MS progression and stimulate remyelination.
We're sharing a report from Deloitte that analyzes the economic impact of the pandemic gap for people living with MS in Canada.
We'll tell you about the results of a study that show lower-efficacy disease-modifying therapies can lead to faster disability accumulation.
You'll hear about the work being done to deliver Ocrevus in a subcutaneous injection.
And we'll tell you what happened that caused a study focused on stopping your DMT if your MS was stable to be called off.
I had the good fortune of speaking with several research presenters at the joint ECTRIMS-ACTRIMS meeting, and I'll be releasing those bonus ECTRIMS Extra Conversations all week long. It's an opportunity for you to listen in to my conversations with some of the top MS research and clinical experts in the world. Be sure to look for these conversations throughout this week!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: More from the largest MS research conference in the world :22
Don't miss ECTRIMS Extra Conversations all week long!
Georgetown University researchers develop a drug that may stop MS progression and stimulate remyelination 1:20
The cost of the pandemic gap for people living with MS in Canada 3:10
Study shows that lower-efficacy DMTs can lead to faster disability accumulation 7:12
Clinical trial demonstrates that subcutaneous formulation of Ocrevus is safe and effective 10:47
Your MS stable, no relapses for at least 5 years. Can you stop your DMT? 12:33
Dr. Helen Tremlett explains how understanding the MS prodrome can change the future of MS treatment 15:49
Share this episode 21:26
Have you downloaded the free RealTalk MS app? 21:47
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/321
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
REPORT: The Socioeconomic Cost of, and Impact of, COVID-19 on Multiple Sclerosis in Canada https://mscanada.ca/sites/default/files/documents/2023-10/deloitte-covid-19-impact-english.pdf
ECTRIMS PRESENTATION: Subcutaneous Ocrelizumab in Patients with Multiple Sclerosis: Results of the Phase 1b Dose-Finding OCARINA 1 Study https://s3.eu-central-1.amazonaws.com/m-anage.com.storage.congrex/abstracts_ectrims2023/148349.pdf
ECTRIMS PRESENTATION: Discontinuation of First-Line Disease-Modifying Therapy in Stable MS (DOT-MS): An Early-Terminated Multicenter Randomized Controlled Trial https://s3.eu-central-1.amazonaws.com/m-anage.com.storage.congrex/abstracts_ectrims2023/146784.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 321 Guest: Dr. Helen Tremlett
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With about 9,000 MS researchers and clinicians in attendance, the 2023 combined ECTRIMS-ACTRIMS meeting in Milan was the largest MS research conference in the world.
During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh.
Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Toronto, Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/ectrims2301
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS EXTRA with Dr. Jiwon Oh Guest: Dr. Jiwon Oh
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Last week, more than 9,000 MS research scientists and clinicians from more than 110 countries traveled to Milan to attend the largest MS research conference in the world, the 2023 joint ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) annual meeting.
In keeping with a RealTalk MS tradition, just as the meeting was ending and the thousands of attendees were heading for the exits, I connected with the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, to discuss some of the research that captured his attention during the 3-day meeting.
Earlier in the final day of the joint ECTRIMS-ACTRIMS meeting, I connected with Bonnie Higgins, who was in Milan to participate in the ECTRIMS MS Patient Community Day. Bonnie was diagnosed with MS in 1994, and she shared her perspective on this remarkable conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: From the largest MS research conference in the world :22
Bonnie Higgins shares her perspective on ECTRIMS-ACTRIMS 2023 :50
Dr. Tim Coetzee talks about the ECTRIMS presentations that caught his eye 9:11
Share this episode 16:23
Have you downloaded the free RealTalk MS app? 16:42
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/320
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 320 Guest: Bonnie Higgins and Dr. Tim Coetzee
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We've been using the same MS clinical course descriptors (relapsing-remitting, secondary progressive, and primary progressive) for almost three decades. As research has provided so much additional information and insight, is it time to update the way we describe, diagnose, and treat MS?
The International Advisory Committee on Clinical Trials in Multiple Sclerosis has established a working group to explore this question. And, as a means of eliciting feedback from stakeholders around the world, a global survey was launched.
The National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, joins me to share the results of this survey, which may represent a first step toward delivering next-generation MS care.
We're just two days away from the Hispanic/Latinx MS Experience Summit! We'll tell you why you don't want to miss this free online event, and we'll even tell you how to register.
We're sharing the results of a study that provides strong evidence for adopting hematopoietic stem cell transplantation (aHSCT) as a standard treatment option for people living with relapsing-remitting MS.
And we're sharing evidence from a Phase 3 clinical trial that demonstrates how cognitive behavioral therapy delivered over the internet significantly reduces depressive symptoms and improves the quality of life for people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: When it comes to adopting a new framework for describing MS, the survey says... :22
The Hispanic-Latinx MS Experience Summit is just two days away! 2:02
Swedish study shows that autologous hematopoietic stem cell transplantation (aHSCT) is an effective treatment for adults with relapsing-remitting MS 3:41
Phase 3 clinical trial shows that cognitive behavioral therapy delivered over the internet significantly reduces depressive symptoms among people liviing with MS 6:07
Dr. Tim Coetzee shares the results of a global survey that asked whether it's time to update the way we describe, diagnose, and treat MS 9:36
Share this episode 27:21
Have you downloaded the free RealTalk MS app? 27:42
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/319
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Do the Current MS Clinical Course Descriptors Need to Change and If So, How?: A Survey of the MS Community https://journals.sagepub.com/doi/10.1177/13524585231196786
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Register for the Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/Resources-Support/Library-Education-Programs/Hispanic-Latinx-MS-Experience-Summit
STUDY: Heaematopoietic Stem Cell Transplantation for Treating Multiple Sclerosis in Sweden: An Observational Cohort Study https://jnnp.bmj.com/content/early/2023/08/14/jnnp-2023-331864
National MS Society Recommendations for aHSCT-Bone Marrow Transplant for MS https://www.nationalmssociety.org/About-the-Society/News/National-MS-Society-Releases-Recommendations-for-a
STUDY: Internet-Derived Cognitive Behavioural Therapy Programme to Reduce Depressive Symptoms in Patients with Multiple Sclerosis: A Multicentre, Randomised, Controlled Phase 3 Trial https://sciencedirect.com/science/article/pii/S2589750023001097
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 319 Guest: Dr. Tim Coetzee
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In this episode of RealTalk MS, we're talking about what you should be talking about with your neurologist or MS Specialist. Shared decision-making is a key component of patient-centered health care. It's a process in which clinicians and patients work together to make evidence-based decisions on tests, treatments, and care plans that balance risks and expected outcomes with patient preferences and values.
But is shared decision-making actually occurring? Or are people living with MS still being handed a bunch of pamphlets published by different pharmaceutical companies and being asked to read them and let their doc know which disease-modifying therapy they'd like to start? How do we bridge the gap between the promise of shared decision-making and what, for too many people living with MS, is still an unfortunate reality?
Dr. Lilyana Amezcua joins me to share her thoughts on how to start the kinds of conversations you should be having with your neurologist or MS specialist.
Dr. Amezcua is an Associate Professor of Neurology, a diversity, equity, and inclusion champion, and the fellowship program director at the University of Southern California Keck School of Medicine.
The National MS Society is hosting the second annual Hispanic/Latinx MS Experience Summit next week. We're sharing all the details, and we'll tell you how you can register for this free virtual event.
We'll fill you in on the European Medicine Agency's approval of the first biosimilar for treating MS.
And we're sharing the results of an important study that focused on how COVID mRNA vaccines affect people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Getting shared decision-making right :22
The Hispanic/Latinx MS Experience Summit is happening Oct. 12th! 2:10
EMA approves the first biosimilar to treat MS 3:54
Study focuses on the affect of COVID mRNA vaccines on people living with MS 4:39
Dr. Lilyana Amezcua discusses how to make shared decision-making work for you and your neurologist 8:57
Share this episode 34:35
Have you downloaded the free RealTalk MS app? 34:55
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/318
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Hispanic/Latinx MS Experience Summit https://nationalmssociety.org/Resources-Support/Library-Education-Programs/Hispanic-Latinx-MS-Experience-Summit
RealTalk MS Episode 315: Understanding Generic and Biosimilar Drugs for MS with Dr. Jiwon Oh https://realtalkms.com/315
STUDY: mRNA Covid-19 Vaccination Does Not Exacerbate Symptoms or Trigger Neural Antibody Response in Multiple Sclerosis https://nn.neurology.org/content/10/6/e200163
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 318 Guest: Dr. Lilyana Amezcua
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RealTalk MS is now 6 years old! We've covered a lot of ground in more than 300 episodes over the past 6 years. And I'm marking our 6-year anniversary by highlighting the most impactful conversations we've had in each of the past 6 years.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/317
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 2: The Congressional Threat to Your Healthcare https://realtalkms.com/2
RealTalk MS Episode 21: MS Advocacy: What It Is and Why It's So Important https://realtalkms.com/21
RealTalk MS Episode 81: The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, and Dr. Ruth Ann Marrie https://realtalkms.com/81
RealTalk MS Episode 125: The Pathways to Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 208: COVID-19 Vaccine Update: The Third Dose and MS with Dr. Nancy Sicotte and Victoria Holmes https://realtalkms.com/208
RealTalk MS Episode 229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi https://realtalkms.com/229
RealTalk MS Episode 231: Evidence Shows EBV Triggers MS -- Understanding the Impact of this Breakthrough Research with Dr. Bruce Bebo https://realtalkms.com/231
RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 317
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It's not unusual to see sex and intimacy become unintended and unnecessary collateral damage in the day-to-day-challenges of living with MS. But it doesn't have to be that way.
Madelyn Esposito, LPC, NCC, CST, joins me to discuss some of the common sexual problems faced by people living with MS, ways to maintain intimacy in your relationships, and tips for maintaining a healthy sex life.
Kristine Werner-Ozug and Cheryl Weeks-Frey take you inside the workings of the MS Society's Community Review of MS Research Committee.
We're also sharing important survey results that support updating the way that we describe MS, research MS, and treat MS.
We'll give you the details of a novel inverse vaccine that's been shown to stop the autoimmune response associated with MS.
And we're congratulating Dr Rhonda Voskuhl for being named the first recipient of the Rachel Horne Prize for Women's Research in MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Let's talk about sex and MS :22
Next Week: It's our 6th anniversary! 1:38
Kristine Werner-Ozug and Cheryl Weeks-Frey share their experiences as members of the National MS Society's Community Review of MS Research Committee 2:22
Survey results support updating the MS clinical course descriptors 9:43
An inverse vaccine stops the animal model of MS 13:43
Dr. Rhonda Voskuhl is the first winner of the Rachel Horne Prize for Women's Research in MS 16:40
Sex therapist Madelyn Esposito shares tips for maintaining intimacy and enjoying a healthy sex life when you're living with MS 18:31
Share this episode 29:28
Have you downloaded the free RealTalk MS app? 29:48
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/316
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee https://realtalkms.com/280
Do the Current MS Clinical Course Descriptors Need to Change and If So, How? A Survey of the MS Community https://journals.sagepub.com/doi/10.1177/13524585231196786
STUDY: Synthetically Glycosolated Antigens for the Antigen-Specific Suppression of Established Immune Responses https://nature.com/articles/s41551-023-01086-2
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 316 Guests: Kristine Werner-Ozug, Cheryl Weeks-Frey, and Madelyn Esposito
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Just a couple of weeks ago, the FDA approved the first biosimilar medication for treating MS. As generics and now, biosimilars, become more available, it seems like the right time for us to get clear on the similarities and differences between generics, biosimilars, and the name-brand drugs that they mimic.
Dr. Jiwon Oh joins me to explain everything you need to know to be an informed medical consumer when it comes to generic and biosimilar disease-modifying therapies. Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Ontario.
We'll also tell you about a simple blood test that can measure MS disease activity.
Izzy Abbas, the Co-Chairperson of the Paralyzed Veterans of America MS Committee will explain how the PVA supports veterans who are living with MS.
We're sharing the details of a large study that determined routine vaccinations don't cause MS relapses.
And if you're in New York and you're ready to laugh for a good cause, we have the details about the StandUp2MS comedy club benefit at Gotham Comedy Club. It's less than a week away!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Generic and biosimilar drugs for MS :22
A simple blood test that can assess MS disease activity 1:51
Izzy Abbas explains how the Paralyzed Veterans of America supports veterans living with MS 7:19
The StandUp2MS comedy club benefit is less than a week away! 17:28
Study results show that routine vaccinations don't cause MS relapses 18:37
Dr. Jiwon Oh explains the differences and similarities between generics, biosimilars, and the name-brand drugs that they mimic 21:19
Share this episode 37:40
Have you downloaded the free RealTalk MS app? 38:00
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/315
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Clinical Validation of a Multi-Protein, Serum-Based Assay for Disease Activity Assessments in Multiple Sclerosis
https://www.sciencedirect.com/science/article/pii/S1521661623004515
Paralyzed Veterans of America
https://pva.org
Standup2MS Comedy Club Benefit
https://standup2ms.org/comedy-club-benefit
STUDY: Vaccines and the Risk of Hospitalization for Multiple Sclerosis Flare-Ups
https://jamanetwork.com/journals/jamaneurology/article-abstract/2809144
National MS Society: Detailed information on vaccinations for people living with MS
https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Vaccinations#section-1
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 315
Guest: Izzy Abbas, Dr. Jiwon Oh
Privacy Policy
When you're living with MS, managing your pelvic floor health may not be among the first things you think about. But pelvic floor dysfunction, and the problems that arise from it, like bladder and bowel issues, can seriously impact your health, well-being, and quality of life.
Jill Ehrmantraut, a physical therapist and women's health clinical specialist with advanced training in pelvic rehabilitation, joins me to explain what pelvic floor rehab is all about, why it's important, and how you can get started on the path to improving your pelvic floor health.
We'll also tell you about the first 10 drugs that will be subject to price negotiations between Medicare and the companies that manufacture these drugs. (And we'll tell you how that's going to benefit tens of thousands of people living with MS)
We'll share the details of how you can weigh in on setting future research priorities for studying women's health in MS.
We'll let you know how you can participate in the Patient Community Day at ECTRIMS, the largest MS research conference in the world.
If you're in New York and you're ready to laugh for a good cause, we have the details about the upcoming StandUp2MS comedy club benefit at Gotham Comedy Club.
And we're sharing U.S. News & World Report's ranking of the best hospitals in the U.S. for neurology and neurosurgery.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Pelvic floor rehab can be a difference-maker in living your best life with MS :22
CMS announces the first 10 prescription drugs for which Medicare will negotiate prices 1:19
You can help set future research priorities for studying women's health in MS 3:00
The largest MS research conference in the world is hosting a Patient Community Day 4:17
The StandUp2MS comedy club benefit is less than two weeks away! 5:45
U.S. News & World Report has issued its ranking of the top hospitals in the U.S. for neurology and neurosurgery 6:58
Jill Ehrmantraut explains what pelvic floor health and why it's especially important when you're living with MS 9:52
Share this episode 22:37
Have you downloaded the free RealTalk MS app? 22:57
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/314
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
SURVEY: Research Priorities in Women's Health in Multiple Sclerosis https://ais.swmed.edu/redcap/surveys/?s=8XJPD3PLCJ483KRL
MSMilan Patient Community Day Information and Registration https://ectrims.edu/msmilan2023-msmilan-patient-community-day/
Standup2MS Comedy Club Benefit https://standup2ms.org/comedy-club-benefit
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 314 Guest: Jill Ehrmantraut
Privacy Policy
Fire, flood, record-setting heat, tropical storm, earthquake -- we've seen it all in the past several weeks! Natural disasters can present a whole series of unique challenges for people affected by MS.
Last year, I had an opportunity to talk about disaster preparedness for people affected by MS with Mary Casey-Lockyer, the Senior Medical Advisor to Disaster Operations at the American Red Cross. As extreme weather events become a more frequent and regular occurrence in our everyday weather patterns, I thought it made sense to revisit my conversation with Mary. Mary has just recently retired from her position at the Red Cross, but I think you'll find her tips and strategies as worthwhile and valuable today as they were a year ago.
We'll also tell you about Tyruko, the first biosimilar to receive FDA approval for treating MS (and we'll make sure you know exactly what biosimilars are and where they fit in the spectrum of pharmaceutical treatments).
We'll share the results of an important clinical trial that may cause experts to re-think when MS begins and when it should be treated.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Revisiting disaster preparedness for people affected by MS :22
The FDA has approved the first biosimilar for treating MS 1:38
Results from a clinical trial show that treating RIS with Aubagio significantly reduces the likelihood of developing MS 4:34
Mary Casey-Lockyer discusses how someone living with MS should prepare for a natural disaster 7:39
Share this episode 28:13
Have you downloaded the free RealTalk MS app? 28:33
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/313
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Teriflunomide and Time to Clinical Multiple Sclerosis in Patients with Radiologically Isolated Syndrome
https://jamanetwork.com/journals/jamaneurology/articles-abstract/2808741
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 313
Guest: Mary Casey-Lockyer
Privacy Policy
Contrary to what was once believed to be true, we now know that exercise and physical activity can deliver several important benefits for people living with MS, and actually improve your quality of life. Experts recommend exercise and physical activity for everyone living with MS, at every level of ability.
Dr. Gretchen Hawley joins me this week to talk about what kinds of exercises you can and should be doing -- at your level of ability.
We'll also tell you about an experimental Epstein-Barr Virus vaccine that was shown to induce a durable immune response in mice. (And we'll remind you why experts believe that an EBV vaccine could eliminate most of the MS in the world!)
And we'll give you the details of the National MS Society's latest $19.4 million investment in research focused on stopping MS in its tracks, restoring lost function, and ending MS forever.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Dr. Gretchen Hawley adapts MS-specific exercise for every level of ability :22
An experimental EBV vaccine induces a durable immune response in mice 1:59
The National MS Society invests $19.4 million in research to drive Pathways to Cures 4:38
Dr. Gretchen Hawley discusses adapting MS-specific exercises for every level of ability 7:38
Share this episode 28:38
Have you downloaded the free RealTalk MS app? 28:59
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/312
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The MSing Link Online Wellness Program for Multiple Sclerosis
https://www.doctorgretchenhawley.com/TheMSingLink
The MSing Link: The Essential Guide to Improve Walking, Strength, & Balance for People with Multiple Sclerosis
https://www.amazon.com/Msing-Link-Essential-Strength-Sclerosis/dp/B0C9SQHJDM
STUDY: Lymph Node Targeted Multi-Epitope Subunit Vaccine Promotes Effective Immunity to EBV in HLA-Expressing Mice
https://nature.com/articles/s41467-023-39770-1
National MS Society Commits $19.4 Million for Research to Drive Pathways to Cures
https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/research/newresearchjune2023.pdf
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 312
Guest: Dr. Gretchen Hawley
Privacy Policy
Rehabilitation can help people regain, keep, or improve the physical or cognitive abilities they need to successfully navigate their daily lives, which makes it an important aspect of managing MS. In this episode of RealTalk MS, we're focusing on a concept that may not be as familiar to you -- prehabilitation, a proactive approach to maintaining your mobility and independence longer.
Returning to RealTalk MS to discuss the value and benefits of prehabilitation is the National MS Society's Associate Vice-President for Research, Dr. Kathy Zackowski.
This week, you'll also meet Matt Knaggs. Matt was diagnosed with MS in 2020, and in a short amount of time, Matt has literally covered a lot of ground, including running a 12-hour ultra-marathon and launching a Facebook group with a unique perspective.
And we'll remind you that this Thursday, August 17th, is Burgers to Beat MS day at A&W locations throughout Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Prehabilitation can make a difference in your future well-being :22
This Thursday is Burgers to Beat MS day in Canada! 1:20
Matt Knaggs talks about running the distance because of MS 2:32
Dr. Kathy Zackowski explains how prehabilitation can be a difference-maker in your future well-being 19:36
Share this episode 38:54
Have you downloaded the free RealTalk MS app? 39:15
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/311
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Burgers to Beat MS
https://BurgersToBeatMS.ca
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 311
Guests: Matt Knaggs and Dr. Kathy Zackowski
Privacy Policy
Dr. Stephen Hauser's research as a physician-scientist has revolutionized our understanding of the genetics, immunology, and treatment of MS. It was Dr. Hauser's research that led to the development of a b-cell therapy for MS, which has been shown to be highly effective in treating all forms of MS and the only treatment approved for treating progressive MS.
Dr. Hauser joins me this week, to discuss some of the pivotal moments in his remarkable career.
Dr. Hauser's memoir, The Face Laughs While the Brain Cries: The Education of a Doctor, goes well beyond the expected autobiography and offers us an opportunity to silently observe the process of scientific discovery. If you're curious about how we know what we know about multiple sclerosis, but you aren't ready to make your way through the dry prose of a scientific journal, this is the book for you.
The World Health Organization has added three disease-modifying therapies for MS to its Essential Medicines List. We'll share the details and tell you why this groundbreaking decision is so important.
We're sharing the results from a clinical trial that provide evidence that starting a disease-modifying therapy early slows MS progression.
And we'll remind you that August 17th is Burgers to Beat MS day at A&W locations throughout Canada.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Dr. Stephen Hauser reflects on his remarkable career :22
The World Health Organization has added three disease-modifying therapies for MS to its Essential Medicines List 1:57
Study results show that starting a disease-modifying therapy early slows MS progression 4:12
August 17th is Burgers to Beat MS day in Canada! 7:01
Dr. Stephen Hauser discusses his remarkable career as a physician-scientist whose discoveries have had an enormous impact on people affected by MS 8:23
Share this episode 29:23
Have you downloaded the free RealTalk MS app? 29:44
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/310
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The Face Laughs While the Brain Cries: The Education of a Doctor by Dr. Stephen Hauser
https://amazon.com/Face-Laughs-While-Brain-Cries/dp/1250283892
MSIF: WHO's Decision Brings Hope to People with MS Worldwide
https://msif.org/news/2023/07/25/whos-decision-brings-hope-to-people-with-ms-worldwide
STUDY: Association of Very Early Treatment Initiation with the Risk of Long-Term Disability in Patients With a First Demyelinating Event
https://n.neurology.org/content/early/2023/07/19/WNL.0000000000207664
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 310
Guest: Dr. Stephen Hauser
Privacy Policy
The ability to speak is something so basic to our day-to-day lives that you may not ever stop to consider it until you realize something about your speech may be changing. And swallowing is something that's so automatic, we take it for granted. Until, that is, something changes, and you find yourself choking on a sip of water.
Speech and swallowing problems are fairly common MS symptoms. And joining me to discuss some of the most common speech and swallowing disorders people with MS might encounter, and how working with a speech pathologist can make a real difference in tackling those speech and swallowing issues is an internationally recognized medical Speech-Language Pathologist and Multiple Sclerosis Certified Specialist, Dr. Marissa Barrera.
We're also sharing news about an updated guidance that's been published by a group of MS experts to help healthcare professionals avoid misdiagnosing MS.
We'll tell you about results from a small study that demonstrate the potential risks associated with requiring prior authorization from insurance companies for disease-modifying therapies which have been prescribed to people newly diagnosed with MS.
The International Progressive MS Alliance has published a report on the Scientific Congress it convened in June. We'll tell you where you can download your copy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Improving speech and swallowing issues in MS :22
An international group of experts has published an updated guidance for neurologists and other healthcare professionals on how to distinguish MS from other neurological look-alikes 1:39
Results from a small study demonstrate that requiring prior authorization for disease-modifying therapies poses potential health risks for people newly diagnosed with MS 3:12
The International Progressive MS Alliance has published a report on the Scientific Congress it convened this past June 8:29
Dr. Marissa Barrera discusses some of the common speech and swallowing disorders people with MS might encounter 9:53
Share this episode 34:51
Have you downloaded the free RealTalk MS app? 35:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/309
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Differential Diagnosis of Multiple Sclerosis: An Updated Consensus Approach
https://thelancet.com/journals/laneur/article/PIIS1474-4422(23)00148-5/fulltext
STUDY: The Impact of Insurance Restrictions in Individuals Newly DIagnosed with Multiple Sclerosis
https://meridian.allenpress.com/ijmsc/article/doi/10.7224/1537-2073.2022-069/494514/The-Impact-of-Insurance-Restrictions-in
Report from the International Progressive MS Alliance 2023 Scientific Congress
https://www.progressivemsalliance.org/wp-content/uploads/2023/07/230719-Alliance-Scientific-Congress-Report-July-2023.pdf
RealTalk MS Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1)
https://realtalkms.com/303
RealTalk MS Episode 304: The International Progressive MS Alliance Scientific Congress (Part 2)
https://realtalkms.com/304
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 309
Guest: Dr. Marissa Barrera
Privacy Policy
Experiencing difficulty walking is one of the most common mobility challenges faced by people living with MS. The good news is that there are things you can do -- both with a physical therapist and by yourself, at home -- that can make a real difference.
Joining me to discuss improving your gait, avoiding falls, and what experts are learning from the latest research in this area is the Director of Research for the Department of Health Care Sciences at Wayne State University School of Medicine, Dr. Nora Fritz.
We're also sharing the results of a study that looked at whether disease-modifying therapies had an impact on the number of hospitalizations or visits to the doctor someone with MS might experience over a 22-year period.
We'll tell you about a study that measured the outcome for people with relapsing-remitting MS who were treated with autologous hematopoietic stem cell transplantation (aHSCT) compared with the outcome for people with relapsing-remitting MS who were treated with Gilenya, Tysabri, or Ocrevus.
We'll share the results from a study that analyzed 56 other studies to determine the prevalence of sexual dysfunction among women living with MS.
We'll tell you about a nationwide study that's about to get underway that will try to answer the question, 'Should people with MS over the age of 65 discontinue their disease-modifying therapy?'
And we'll remind you about how you can join us in Napa Valley this Saturday, July 29th, for Crush MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Improving your balance and gait :22
A research team analyzed the risk of hospitalization over a 22-year period for people with MS who were on a disease-modifying therapy and compared those results to people with MS who weren't on a DMT 1:21
Researchers compared patient outcomes associated with autologous hematopoietic stem cell transplantation (aHSCT) and compared them with outcomes associated with Gilenya, Tysabri, and Ocrevus 4:40
A research team in Iran analyzed results from 56 separate studies about sexual dysfunction in women with MS 8:29
Should someone over the age of 65 discontinue their disease-modifying therapy? 11:40
Dr. Nora Fritz discusses gait, balance, fall prevention and more 15:20
Share this episode 33:49
I'll be at Crush MS! Will I see you there? 34:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/308
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Disease-Modifying Drugs for Multiple Sclerosis and Subsequent Health Service Use
https://pubmed.ncbi.nlm.nih.gov/34949130
Tremlett's MS Research Explained: Disease-Modifying Drugs for Multiple Sclerosis and Subsequent Health Service Use
https://tremlettsmsresearchexplained.wordpress.com/category/ms-disease-modifying-drug-research
STUDY: Comparative Effectiveness of Autologous Hematopoietic Stem Cell Transplant vs Fingolimod, Natalizumab, and Ocrelizumab in Highly Active Relapsing-Remitting Multiple Sclerosis
https://pubmed.ncbi.nlm.nih.gov/37437240
STUDY: Prevalence and Risk of Developing Sexual Dysfunction in Women with Multiple Sclerosis (MS): A Systematic Review and Meta-Analysis
https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-023-02501-1
RealTalk MS Episode 255: Aging With MS with Dr. John Corboy
https://realtalkms.com/255
Crush MS
https://crushms.org
If you're living with MS, email info@crushms.org for special deep discount code
Crush MS 10% Discount Code for everyone is Realtalkmsdiscount (case sensitive)
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 308
Guest: Dr. Nora Fritz
Privacy Policy
Learning to effectively manage stress and anxiety is important for everyone. And if you're living with the unpredictability of MS, it may be doubly important.
Joining me to discuss the impact that stress and anxiety can have on your physical and mental health, along with strategies you can use to manage the stress and anxiety in your life, is Dr. Bree Wannamaker. Dr. Wannamaker lives with MS, and she's a Licensed Professional Counselor and Chief Therapist & Consultant in her practice, Just Us Counseling and Consulting, LLC.
We're also sharing the results of a study that compared patient outcomes among people with relapsing-remitting MS who were started on a high-efficacy disease-modifying therapy and people with relapsing-remitting MS who were started on a lower efficacy DMT.
We'll tell you about remyelination research that led to a surprising conclusion.
We'll share the details about Crush MS, an amazing event in Napa Valley that brings together wine, food, and music to raise money for MS research. I hope I'll see you there!
And if you're on Ocrevus, we have some potentially time-saving news to share with you!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing stress and anxiety if you're living with MS :22
A research team analyzed the outcomes for people with MS who were started on a high-efficacy DMT and compared them to the outcomes for people with MS who were started on a lower-efficacy DMT 1:18
An experimental therapy promoted remyelination by upending the commonly held scientific hypothesis about myelin repair 6:53
I'll be at Crush MS! Will I see you there? 9:53
An Ocrevus treatment in just 10 minutes? 11:31
Dr. Bree Wannamaker shares strategies for managing stress and anxiety 13:33
Share this episode 33:20
Have you downloaded the free RealTalk MS app??? 33:41
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/307
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Does Initial High-Efficacy Therapy in Multiple Sclerosis Surpass Escalation Treatment Strategy? A Comparison of Patients with Relapsing-Remitting Multiple Sclerosis in the Czech and Swedish National Multiple Sclerosis Registries
https://sciencedirect.com/science/article/abs/pii/S221103482300305X
TREAT-MS Clinical Trial
https://treat-mstrial.org
Crush MS
https://crushms.org
If you're living with MS, email info@crushms.org for special deep discount code
Crush MS 10% Discount Code for everyone is Realtalkmsdiscount (case sensitive)
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 307
Guest: Dr. Bree Wannamaker
Privacy Policy
Living your best life with MS often means planning ahead and, when circumstances require, knowing when and how to adapt. Many of us find ourselves in the kitchen every day. And, while cooking can be pleasurable, it can also be a chore that only gets worse if you're dealing with pain, fatigue, mobility issues, tingling in your hands and arms, unsteady balance, or other MS symptoms.
Award-winning author, chef, and blogger, Trevis Gleason joins me to talk about how planning ahead and adopting new behaviors can ease the burden of meal preparation. Trevis was diagnosed with secondary progressive MS in 2001, and he's sharing tips and strategies designed to make your meal planning and prepping easier.
We're also sharing the details about Crush MS, a fantastic mix of wine, food, and music that raises funds for MS research.
We'll introduce you to Air4All, a company that's out to make air travel a much better experience for wheelchair users.
We'll share the outcome of a study that has identified a single genetic variant that may determine how fast an individual's MS will progress.
We'll tell you about another study that gives us one more important reason to quit smoking if you're living with MS.
And we'll share study results from Denmark that demonstrate the impact of a plant-based diet on people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How to make meal planning and prep easier if you're living with MS :22
I'll be at Crush MS! Will I see you there? 1:23
Air4All may change everything about air travel for wheelchair users 3:10
Researchers have identified a single genetic variant that may determine how fast MS progresses 5:55
Study results provide one more really good reason to stop smoking if you're living with MS 8:10
Study results illustrate the impact of a mostly plant-based diet on people living with MS 11:08
Award-winning author, chef, and blogger, Trevis Gleason, shares tips and strategies designed to make meal planning and prep easier if you're living with MS 13:54
Share this episode 29:29
Have you downloaded the free RealTalk MS app??? 29:51
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/306
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Crush MS
https://crushms.org
If you're living with MS, email info@crushms.org for special deep discount code
Crush MS 10% Discount Code for everyone is Realtalkmsdiscount (case sensitive)
RealTalk MS Episode 302: De-Stressing Air Travel If You're Living With MS with Dr. Scott Crawford
https://realtalkms.com/302
Air4All
https://air4all.net
STUDY: Locus for Severity Implicates CNS Resilience in Progression of Multiple Sclerosis
https://nature.com/articles/s41586-023-06250-x
STUDY: The Effects of Different Types of Smoking on Recovery From Attack on Hospitalized Multiple Sclerosis Patients
https://sciencedirect.com/science/article/abs/pii/S0303846723002627
STUDY: Dietary Patterns and Their Association with Symptom Levels Among People with Multiple Sclerosis: A Real-World Digital Study
https://link.springer.com/article/10.1007/s40120-023-00505-5
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 306
Guest: Trevis Gleason
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This special episode of RealTalk MS is sponsored by Sanofi.
In this special episode of RealTalk MS, Dr. Aaron Boster walks us through everything you need to know about clinical trials.
If you've ever wondered what the difference is between a Phase 1 clinical trial, a Phase 2 clinical trial, or a Phase 3 clinical trial, you're about to find out. If you're curious about how a clinical trial participant's privacy is protected, how safety is ensured, and how you can learn about clinical trials that may be taking place near you, it's time to click that PLAY button!
Dr. Aaron Boster is a board-certified neurologist specializing in MS and the founder of the Boster Center for Multiple Sclerosis in Columbus, Ohio, Dr. Boster has been a principal investigator in numerous clinical trials and has published extensively in medical journals.
To learn more about Sanofi's clinical research studies, please visit https://www.sanofistudies.com/us/en
2023 marks 30 years since the very first MS disease-modifying therapy received FDA approval. To say that changed everything would be an understatement.
Two of the top MS experts in the world have published a reflection, looking back at how MS research and treatment has progressed over the past 30 years and looking ahead at the challenges that remain in solving the riddle of MS. Joining me this week are the authors of that reflection, Dr. Fred Lublin and Dr. Stephen Krieger.
Dr. Lublin participated in the development of the very first disease-modifying therapy approved for treating MS and, since that time, he has been involved in the development of nearly all of the DMTs available today.
Dr. Krieger has developed a game-changing theory that MS is a single disease that evolves along a continuum, rather than the four separate categories that neurologists have used to describe MS for the past couple of decades.
We'll also introduce you to The Community Review of MS Research Committee.
We'll share what very well may be the single most important development to come out of the Pathways To Cures Global Summit.
We'll tell you about the outcome of a study that may point to a potential MS treatment for women that has also been shown to trigger myelin repair.
We'll explain the method for accurately measuring remyelination that was just recently confirmed by a UCSF research team.
And we'll tell you where you can catch the video replay of the webcast that was live-streamed from last month's International Progressive MS Alliance Scientific Congress.
We have a lot to talk about! Are you ready for RealTalk MS??!
I'm back from the Community Review of MS Research Committee meeting :22
This Week: 30 Years Later....looking back (and ahead!) 4:08
The first-ever Global Research Strategy Framework has been announced 5:26
Don't miss the video replay of the webcast that was live streamed from last month's International Progressive MS Alliance Scientific Congress 2:55
A study shows that the hormone estriol reduces MS severity and promotes myelin repair 9:54
A UCSF research team has developed a method of accurately measuring remyelination 13:16
Dr. Fred Lublin and Dr. Stephen Krieger review the progress that's been made since the approval of the first MS disease-modifying therapy and they look ahead at the challenges that remain in solving the riddle of MS 17:23
Share this episode 30:08
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Just copy this link & paste it into your text or email: https://realtalkms.com/305
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 297: The Pathways To Cures Global Summit (Part 1)
https://realtalkms.com/297
RealTalk MS Episode 298: The Pathways To Cures Global Summit (Part 2)
https://realtalkms.com/298
Video Replay: Ending MS Progression: Research Advances That Could Lead to Breakthrough Treatment
https://www.youtube.com/watch?v=p9OQ_hvVpfA
STUDY: Neuroprotection in Cerebral Cortex Induced by the Pregnancy Hormone Estriol
https://sciencedirect.com/science/article/pii/S0023683723001320?via%3Dihub
RealTalk MS Episode 189: Research on Sex Differences in MS Leads to Potential Treatment Options with Dr. Rhonda Voskuhl
https://realtalkms.com/189
STUDY: MWF of the Corpus Callosum Is a Robust Measure of Remyelination: Results from the ReBUILD Trial
https://pnas.org/doi/10.1073/pnas.2217635120
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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RealTalk MS Episode 305
Guests: Dr. Fred Lublin and Dr. Stephen Krieger
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Just a couple of weeks ago, the International Progressive MS Alliance convened its fourth Scientific Congress in Vienna, Austria, bringing together nearly 200 international scientists and MS leaders, including people affected by progressive MS, to report and review the progress being made in developing new, effective treatments for progressive MS.
In Part 2 of our coverage, we're taking you back inside this Scientific Congress, where you'll hear from some of the top MS researchers in the world who participated in this game-changing event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: More from the International Progressive MS Alliance Scientific Congress :22
Professor Xavier Montalban shares his perspective on the role of the Alliance and the presentations that we saw and heard on Day One of the Scientific Congress 1:32
Professor David Leppert explains how a biomarker for MS progression will impact MS research and MS treatment 8:04
Dr. Anne Cross discusses some of the presentations that we saw and heard on Day One of the Scientific Congress 16:20
Philanthropist Monia Joblin explains why the work of the International Progressive MS Alliance is important to her and to other families affected by progressive MS 26:13
Share this episode 39:19
Have you downloaded the free RealTalk MS app??? 39:40
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/304
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The International Progressive MS Alliance
https://progressivemsalliance.org
RealTalk MS Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1)
https://realtalkms.com/303
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 304
Guests: Prof. Xavier Montalban, Prof. David Leppert, Dr. Anne Cross, and Monia Joblin
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Last week, the International Progressive MS Alliance convened its fourth Scientific Congress in Vienna, Austria, bringing together nearly 200 international scientists and MS leaders, including people affected by progressive MS, to report and review the progress being made in developing new, effective treatments for progressive MS.
In Part 1 of our coverage, we're taking you inside this Scientific Congress, where you'll hear from some of the top MS researchers in the world who participated in this game-changing event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The International Progressive MS Alliance Scientific Congress :22
Dr. Robert Fox shares an overview of the Alliance and a preview of this Scientific Congress 3:17
Vanessa Fanning explains the role of the Alliance People Affected by MS Engagement Coordination Team 16:49
Professor Tanja Kuhlmann discusses the critical importance of identifying the mechanisms that drive MS progression 26:01
Remyelination is a natural process. Professor Robin Franklin explains why it stops working for people with MS 35:24
Professor Olga Ciccarelli tells us where we are in understanding remyelination and shares some of her cutting-edge research 41:48
Share this episode 53:01
Please remember to take our listener survey! 53:21
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/303
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The International Progressive MS Alliance
https://progressivemsalliance.org
RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann
https://realtalkms.com/279
RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee
https://realtalkms.com/280
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 280
Guests: Dr. Robert Fox, Vanessa Fanning, Prof. Tanja Kuhlmann, Prof. Robin Franklin, and Prof. Olga Ciccarelli
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When you’re living with MS, air travel can sometimes get complicated. We’re heading into the summer vacation season, so the timing couldn’t be better to talk with Dr. Scott Crawford.
Dr. Crawford is a neuropsychologist who lives with MS and has extensive experience as a passenger on commercial airlines. Dr. Crawford is also an MS Activist and he's joining me to walk us through how to de-stress airline travel and to explain your rights as an airline passenger if you're living with a disability.
You're also going to meet MS patient advocate Julie Stamm and Dr. Jenny Woo, the two difference-makers behind a project called 52 Essential Inclusion Skills: An A-to-Z Guide to Kindness, Compassion, and Respect for Diverse Abilities.
We'll give you your last reminder to sign up for the Black MS Experience Summit. It's happening virtually this Wednesday and Thursday, June 14th and 15th.
And we'll also tell you where you can sign up for the global webcast that I'll be hosting this Thursday, June 15th, from the International Progressive MS Alliance Scientific Congress in Vienna, Austria.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: De-Stressing Air Travel If You're Living with MS :22
June 14th and 15h -- It's the Black MS Experience Summit 1:19
June 14th -- Don't miss the webcast from the International Progressive MS Alliance Scientific Congress live from Vienna, Austria 2:17
Julie Stamm and Dr. Jenny Woo share 52 Essential Inclusion Skills: An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities 2:55
Dr. Scott Crawford discusses how to de-stress air travel if you're living with MS 19:29
Share this episode 38:00
Have you downloaded the free RealTalk MS app??? 38:21
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/302
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
52 Essential Inclusion Skills: An A-to-Z Guide to Kindness, Compassion, and Respect for Diverse Abilities
https://mindbrainemotion.com/products/52-essential-inclusion-skills
REGISTER for the Black MS Experience Summit
https://nmss.6connex.com/event/BlackMSExperienceSummit/login
REGISTER for the International Progressive MS Alliance Scientific Congress LIVE Webcast
https://msif.org/join-us-for-the-june-2023-webcast-on-ending-ms-progression
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 302
Guests: Julie Stamm, Dr. Jenny Woo, and Dr. Scott Crawford
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Last week, the Consortium of Multiple Sclerosis Centers brought together over 2,000 neurologists, MS nurses, rehabilitation specialists, and other healthcare professionals in Aurora Colorado, for their annual conference.
This week, we're taking you inside the meeting and sharing our conversations with some of the difference-makers in the MS Movement.
Next week, we're traveling to Vienna, Austria to attend the International Progressive MS Alliance Scientific Congress, where we'll hear updates on some of the cutting-edge progressive MS research that the Alliance is funding. And during the conference, we're hosting a live webcast that you won't want to miss!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're at the Consortium of Multiple Sclerosis Centers Annual Conference :22
Dr. Kathy Zackowski gives us an overview of some of the presentations that caught her eye 1:03
Dr. Anthony Feinstein talks about emerging research focused on the impact of mental health issues on people with MS 22:10
President and CEO of the National MS Society, Cyndi Zagieboylo discusses some of the Society's game-changing initiatives 31:30
Next week: I'll be in Vienna, attending the International Progressive MS Alliance Scientific Congress. Don't miss our live webcast from Vienna! 47:03
Share this episode 48:08
Have you downloaded the RealTalk MS app??? 48:28
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/301
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Live Webcast from the International Progressive MS Alliance Scientific Congress in Vienna, Austria https://msif.org/join-us-for-the-june-2023-webcast-on-ending-ms-progression
Download What to Expect from Mental Healthcare: A Guide for People with MS https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/brochures/ce_pubs_mentalhealthguidnce_0422_final.pdf
Download What to Expect from Rehabilitation Care: A Guide for People with MS https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/brochures/brochure-rehabilitation-care.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 301 Guests: Dr. Kathy Zackowski, Dr. Anthony Feinstein, and Cyndi Zagieboylo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Welcome to the 300th episode of RealTalk MS! Yikes!
In last week's episode of the podcast, Dr. Bruce Bebo walked us through the latest research on the prevalence of MS in the United States, and the data serves as a clear reminder that anyone can get MS.
However, not everyone with MS receives the same quality of care. My guest today is clinician-researcher Dr. Lilyana Amezcua, and we're discussing her work in exploring healthcare disparities among minority populations.
In addition to celebrating our 300th episode, we're also celebrating World MS Day! We'll let you know where you can join the virtual festivities.
And, as our RealTalk MS Listener Survey ends, we're announcing the winner of a $100 Amazon Gift Card.
Can Do MS is hosting a day-long in-person and virtual More About MS program this Friday, June 2. We'll give you the details and tell you how you can register for this free event.
And the International Progressive MS Alliance has announced a large-scale research program focused on developing solutions to some of the most challenging symptoms that people living with progressive MS face. We're sharing the details.
We have a lot to talk about! Are you ready for RealTalk MS??!
Welcome to our 300th episode! :25
It's World MS Day! 1:55
Congratulations to the winner of a $100 Amazon gift card! 2:56
Details and registration info for the Can Do MS More About MS Program 3:43
The International Progressive MS Alliance announces a large-scale research program 5:17
Dr. Lilyana Amezcua discusses healthcare disparities among minority communities 7:51
Share this episode 32:12
Thanks for listening, and here's to the next 300!! 32:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/300
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
World MS Day on the Web https://worldmsday.org
World MS Day on Facebook https://facebook.com/worldmsday
REGISTER for the Can Do MS More About MS Program https://cando-ms.org/more-about-ms-registration
Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance https://journals.sagepub.com/doi/pdf/10.1177/1352458521999970
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 300 Guests: Dr. Lilyana Amezcua
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Evidence shows that MS can affect members of minority communities differently. But how does that impact the total number of people who are living with MS? For multiple reasons, it's a tricky problem to solve. Yet, it's important that the numbers reflect everyone living with MS and no one is left behind.
This week, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, is on hand to walk us through the just-published results of a study that provides a more granular estimate of the prevalence of MS in the United States, analyzing it by race, ethnicity, age, sex, and geographic region.
We're also reminding you that this is the final week for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and, maybe, win a $100 Amazon gift card.
On June 14th and 15th, the National MS Society is hosting the virtual 2023 Black MS Experience Summit. And we're sharing all the registration info.
Can Do MS is hosting a day-long in-person and virtual More About MS program on June 2. We'll tell you how you can register for this free event.
We'll give you the details about the latest advocacy win for people living with MS.
And we'll tell you about the new MS Society in the UAE.
We're sharing the results of a study that analyzed the benefits of virtual reality therapy for improving balance among people living with MS.
And we'll tell you about the somewhat puzzling results of a study of the incidence of MS in the U.K.
We have a lot to talk about! Are you ready for RealTalk MS??!
Next Week: Episode 300 (Yikes!) :22
FINAL WEEK: Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! 1:36
This Week: A deep dive into the prevalence of MS in the United States 2:31
Registration info for the 2023 Black MS Experience Summit 3:12
Registration info for the Can Do MS More About MS Program 4:12
An advocacy win! 6:13
An MS Society in the UAE 10:40
STUDY: Virtual reality therapy is shown to improve balance for people living with MS 12:34
STUDY: The incidence of MS in the U.K. has not changed for almost two decades 16:25
Dr. Bruce Bebo walks us through anewly-published study that takes a granular look at the prevalence of MS in the United States 21:09
Share this episode 34:05
Please remember to take our listener survey! 34:26
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/299
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
STUDY: Population-Based Estimates for the Prevalence of Multiple Sclerosis in the United States by Race, Ethnicity, Age, Sex, and Geographic Region https://jamanetwork.com/journals/jamaneurology/fullarticle/2805038
REGISTER for the National MS Society's 2023 Black MS Experience Summit https://nmss.6connex.com/event/BlackMSExperienceSummit/login
REGISTER for the Can Do MS More About MS Program https://cando-ms.org/more-about-ms-registration
Advocate For Change -- Become an MS Activist https://nationalmssociety.org/advocacy
The National MS Society in the UAE https://www.nationalmssociety.ae
STUDY: Virtual Reality-Based Therapy Improves Balance and Reduces Fear of Falling in Patients with Multiple Sclerosis: A Systematic Review and Meta-Analysis of Randomized Controlled Studies https://jneuroehgrehab.biomedical.com/articles/10.1186/s12984-023-01174-z
STUDY: Incidence, Prevalence, and Co-Occurrence of Autoimmune Disorders Over Time and by Age, Sex, and Socioeconomic Status: A Population-Based Cohort Study of 22 Million Individuals in the U.K. https://thelancet.com/journals/lancet/article/PIIS0140-6736(23)00457-9/fulltext
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 299 Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Don't miss the second installment of our Pathways To Cures Global Summit coverage. For this unprecedented event, the National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.
In Part 2 of our coverage, we're taking you back inside this historic meeting, where you'll hear from more of the top MS experts in the world who participated in this remarkable event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We wrap up our coverage of the Pathways To Cures Global Summit :22
We've learned more about the prevalence of MS in the United States 1:22
Dr. Anne Helme discusses the wide variance in MS treatment 5:13
Dr. Paula Zaratin talks about the importance of research governance 11:01
Dr. Peter Calabresi discusses the uncertainty of living with MS 18:19
Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways To Cures global research initiative 24:57
Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways To Cures initiative doesn't leave anyone behind 30:15
Summing up the Pathways To Cures Global Summit 35:16
Share this episode 36:05
Please remember to take our listener survey! 36:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/298
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Episode 297: From the Pathways To Cures Global Summit (Part 1) https://realtalkms.com/297
RealTalk MS Episode 125: From the Pathways To Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 238: The Pathways To Cures Research Roadmap https://realtalkms.com/238
Pathways To Cures https://nationalmssociety.org/pathways-to-cures
RealTalk MS Episode 81: The Prevalence of MS with National MS Society CEO Cyndi Zagieboylo, Dr. Bruce Bebo, and Dr. Ruth Ann Marrie https://realtalkms.com/81
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 298 Guests: Dr. Anne Helme, Dr. Paula Zaratin, Dr. Peter Calabresi, Dr. Daniel Ontaneda, and Dr. Mitzi Joi Williams
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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This past week, the National MS Society hosted the Pathways To Cures Global Summit, bringing together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years.
In Part 1 of our coverage, we're taking you inside this historic meeting, where you'll hear from some of the top MS experts in the world who participated in this remarkable event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The Pathways To Cures Global Summit :22
My conversation with a distinguished group of CEOs representing 5 major MS Societies 3:04
Tim Coetzee discusses the current state of MS care and the work ahead 9:20
Kathy Smith offers her perspective on the Pathways To Cures Global Summit 14:32
Dr. Anne-Katrin Probstel talks about stopping MS 22:52
Dr. Naila Makhani discusses detecting MS early 33:54
Share this episode 39:17
Please remember to take our listener survey! 39:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/297
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Episode 125: From the Pathways To Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 238: The Pathways To Cures Research Roadmap https://realtalkms.com/238
Pathways To Cures https://nationalmssociety.org/pathways-to-cures
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 297 Guests: Cyndi Zagieboylo, Dr. Pam Valentine, Prof. Des Graham, Nick Moberly, Klaus Holm, Tim Coetzee, Kathy Smith, Dr. Anne-Katrin Probstel, and Dr. Naila Makhani
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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This week, we're in New York, attending the Pathways To Cures Global Summit. The National MS Society is convening the world -- bringing together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry and people affected by MS -- to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years. Don't miss next week's episode of RealTalk MS, when you'll hear from many of the experts on hand for this historic meeting.
In this week's episode, we're talking about exacerbations, flares, attacks -- these are just some of the words we use when we're describing an MS relapse. Relapses impact over 85% of the people living with MS. And today, we're reviewing the things you need to know when it comes to MS relapses with Dr. Sam Hooshmand, the Director of the Multiple Sclerosis Clinic at the Milwaukee Veterans Affairs Medical Center, and Assistant Professor of Neurology at the Medical College of Wisconsin.
We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we're adding some motivation to that invitation by giving you an opportunity to win a $100 Amazon gift card.
We'll introduce you to a remarkable MS research scientist and the Chair of the National MS Society's Scientific Advisory Committee, Dr. Tika Benveniste.
We're sharing the outcome of a study that compared the benefits of yoga and physical therapy for people living with MS.
And we'll tell you about a first-of-its-kind collaboration between Cariloop and Walgreens that's designed to support MS caregivers.
We have a lot to talk about! Are you ready for RealTalk MS??!
Greetings from the Pathways to Cures Global Summit :22
Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! 2:09
This Week: Everything you should know about MS relapses 2:49
Meet the Chair of the National MS Society's Scientific Advisory Committee, Dr. Tika Benveniste 3:35
Study compares the benefits of yoga and physical therapy for people living with MS 16:53
Cariloop and Walgreens announce collaboration to support MS caregivers 21:19
Dr. Sam Hooshmand reviews everything you should know about MS relapses 24:13
Share this episode 34:09
Please remember to take our listener survey! 34:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/296
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Episode 125: From the Pathways To Cures Think Tank https://realtalkms.com/125
RealTalk MS Episode 238: The Pathways To Cures Research Roadmap https://realtalkms.com/238
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 1 https://realtalkms.com/barancik1
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 2 https://realtalkms.com/barancik2
STUDY: Yoga vs Physical Therapy in Multiple Sclerosis: Results of a Randomized Controlled Trial and the Training Protocol https://journals.sagepub.com/doi/full/10.1177/09727531231161994
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 296 Guests: Dr. Tika Benveniste and Dr. Sam Hooshmand
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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In this week's episode, we're talking about a set of MS symptoms that can range in intensity from mildly annoying to completely debilitating. These symptoms include numbness, tingling, pain, that "electric shock" feeling you might experience traveling down the back of your neck, and the infamous MS hug.
Joining me to walk us through how to best manage these sensory symptoms is Dr. Jeffrey Hernandez. Dr. Hernandez is a doctorally prepared nurse practitioner who specializes in multiple sclerosis.
We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we're adding some motivation to that invitation by giving you an opportunity to win a $100 Amazon gift card.
And we're inviting you to get up close and personal with some of the most brilliant MS researchers in the world in Parts 1 and 2 of our two-part special podcast series, Barancik Prize Conversations.
We'll share an amazing essay about living with progressive MS that was written by author and artist, Elizabeth Jameson, and published in the San Francisco Chronicle.
You'll hear my recent conversation with one of the leading experts in the world on autologous hematopoietic stem cell therapy (aHSCT), Dr. Jeffrey Cohen.
And we'll tell you about how you can participate in the Targeted Exercise for African-Americans with Multiple Sclerosis (TEAAMS) study.
We have a lot to talk aboJut! Are you ready for RealTalk MS??!
Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! :34
This Week: Managing MS Sensory Symptoms 1:13
Don't miss Parts 1 and 2 of our special series, Barancik Conversations 2:08
Elizabeth Jameson's essay in the San Francisco Chronicle 4:26
Dr. Jeffrey Cohen discusses innovation in MS research and autologous hematopoietic stem cell transplantation (aHSCT) 13:23
How you can participate in the Targeted Exerecise for African-Americans with Multiple Sclerosis (TEAAMS) study 25:34
Dr. Jeffrey Hernandez talks about managing numbness, tingling, pain, and other MS sensory symptoms 28:48
Share this episode 41:59
Please remember to take our listener survey! 42:20
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/295
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 1 https://realtalkms.com/barancik1
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 2 https://realtalkms.com/barancik2
Project TEAAMS Information and Registration https://projectteamms.ahs.uic.edu PHONE: (833) 727-1887
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 295 Guests: Dr. Jeffrey Cohen and Dr. Jeffrey Hernandez
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Welcome to Part 2 of a special two-part RealTalk MS series highlighting conversations with past recipients of the Barancik Prize for Innovation in MS Research.
The Barancik Prize is awarded at the annual meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis, a meeting better known as the ACTRIMS Forum. Several past Barancik Prize winners gathered at the 2023 ACTRIMS Forum to celebrate the 10th anniversary of the Barancik Prize, and I took that opportunity to chat with this remarkable group of MS research all-stars.
Part 2 of Barancik Prize Conversations features the 2018, 2020, and 2022 Barancik Prize winners.
Dr. Katerina Akassolgou, of the Gladstone Institute of Neurological Disease, was awarded the Barancik Prize in 2018 for her work understanding the role of fibrin-related nerve damage in MS and designing potential therapies to prevent neurodegeneration.
Dr. Dwight Bergles, of Johns Hopkins University, received the Barancik Prize in 2020 in recognition of his pioneering research in understanding the brain cells involved in myelin repair.
Dr. Ruth Ann Marrie, of the University of Manitoba, is the 2022 recipient of the Barancik Prize in recognition of her groundbreaking contributions to our understanding of MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
About the Barancik Prize Conversations :18
Dr. Katerina Akassoglou 2:03
Dr. Dwight Bergles 10:00
Dr. Ruth Ann Marrie 20:58
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/barancik2
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode: Barancik Prize Conversations -- Part 2 Guests: Dr. Katerina Akassoglou, Dr. Dwight Bergles, and Dr. Ruth Ann Marrie
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Disclosing your MS to your employer is an important decision that can sometimes be tricky and can sometimes lead to unintended consequences. Joining me to discuss some of the things you want to be thinking about when it comes to disclosing your MS in the workplace is a Manager on the Benefits, Employment, and Insurance Team at the National MS Society, Christina Forster. We're also extending an invitation for you to spend a quick couple of minutes taking the RealTalk MS listener survey...and we're adding some motivation to that invitation by giving you an opportunity to win a $100 Amazon gift card.
And we're inviting you to get up close and personal with some of the most brilliant MS researchers in the world in Part 1 of our two-part special podcast series, Barancik Prize Conversations.
While we're talking about brilliant MS researchers, we're also revealing this year's recipient of the John Dystel Prize for MS Research.
We'll share some of the details surrounding the partial hold that the FDA has imposed on three different Phase 3 clinical trials for a new category of MS disease-modifying therapy.
We'll tell you about a small clinical trial that demonstrated the benefit of telerehabilitation in improving MS-related bladder problems.
And we'll tell you about an upcoming clinical trial for the first MS disease-modifying therapy to be formulated as a nasal spray.
We have a lot to talk about! Are you ready for RealTalk MS??!
Take the RealTalk MS listener survey...you might win a $100 Amazon gift card! :22
This Week: Disclosing your MS in the workplace 1:15
Don't miss Part 1 of our special series, Barancik Conversations 2:07
And the winner of the John Dystel Prize for MS Research is... 4:05
The FDA has put a temporary hold on three Phase 3 clinical trials for a new category of MS disease-modifying therapy 5:42
STUDY: Telerehabilitation shown to be successful in managing MS-related bladder problems 8:39
Tiziana Life Scences announces Phase 2 clinical trial for Foralumab, the first MS disease-modifying therapy to be formulated as a nasal spray 12:05
Christina Forster reviews the things you'll want to consider when you're thinking about disclosing your MS to your employer 14:11
Share this episode 30:01
Please remember to take our listener survey! 30:21
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/292
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
RealTalk MS Special Podcast Series: Barancik Prize Conversations Part 1 https://realtalkms.com/barancik1
STUDY: Effects of Pelvic Floor Muscle Training Applied with Telerehabilitation in Patients with Multiple Sclerosis Having Lower Urinary Tract Symptoms: A Randomized Controlled Study https://tandfonline.com/doi/abs/10.1080/07399332.2023.2190593
Take the RealTalk MS Listener Survey https://realtalkms.com/survey
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 294 Guests: Christina Forster
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Welcome to Part 1 of a special two-part RealTalk MS series highlighting conversations with past recipients of the Barancik Prize for Innovation in MS Research.
The Barancik Prize is awarded at the annual meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis, a meeting better known as the ACTRIMS Forum. Several past Barancik Prize winners gathered at the 2023 ACTRIMS Forum to celebrate the 10th anniversary of the Barancik Prize, and I took that opportunity to chat with this remarkable group of MS research all-stars.
Part 1 of Barancik Prize Conversations features the 2014 and 2016 Barancik Prize winners.
Dr. Philip De Jager, of Columbia University, was awarded the Barancik Prize in 2014 for applying powerful analytic approaches to better understanding how genes and the environment interact, with the goal of developing personalized treatments for MS and, ultimately, disease prevention.
Dr. Daniel Reich, of the NIH Institute of Neurological Disorders and Stroke, received the Barancik Prize in 2016 for innovating approaches to imaging MS disease activity, creating new pathways to better treatments.
We have a lot to talk about! Are you ready for RealTalk MS??!
About the Barancik Prize Conversations :18
Dr. Philip De Jager 2:03
Dr. Daniel Reich 19:49
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/barancik1
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode: Barancik Prize Conversations -- Part 1 Guests: Dr. Philip De Jager and Dr. Daniel Reich
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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You've told me that the subject of diet and MS is one of your top three interests. And a quick scan of social media platforms reveals that a lot of people living with MS agree!
This week, Dr. Ilana Katz Sand, the Associate Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai, joins me with an update on what the latest research is revealing about the impact of diet on MS, and to answer that eternal question -- Is there an MS diet?
We're also talking about the launch of OCTOPUS, a groundbreaking clinical trial for progressive MS.
We'll talk with Dr. Erin Longbrake, the principal investigator in CELLO, a national clinical trial that's focused on potentially neutralizing MS before symptoms even develop.
And if you're living with MS and you're looking for one more reason to stop smoking, we're sharing some recently published sobering evidence.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: An update on the impact of Diet on MS :22
OCTOPUS, a groundbreaking clinical trial for progressive MS launches 1:17
Principal investigator Dr. Erin Longbrake discusses the importance of the CELLO study 4:06
STUDY: People with MS who continue to smoke may be facing multiple negative outcomes over time 10:33
Dr. Ilana Katz Sand updates us on the latest research and evidence of how diet impacts MS 16:03
Share this episode 38:58
Have you downloaded the free RealTalk MS app? 39:19
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/293
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register Your Interest in Participating in OCTOPUS https://ukmsregister.org/octopus
Details about participating in the CELLO Study https://cellostudy.org
STUDY: Influence of Oral Tobacco Versus Smoking on Multiple Sclerosis Disease Activity and Progression https://jnnp.bmj.com/content/early/2023/03/30/jnnp-2022-330848
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 293 Guests: Dr. Erin Longbrake and Dr. Ilana Katz Sand
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
If you've listened to this podcast before, you already know that we avoid hype, and we stick to talking about evidence-based science. So, let me say right up front -- today, the cause of multiple sclerosis is unknown. However, a research team has identified a bacterial toxin that may prove to be the cause of MS onset as well as MS relapses.
Joining me for an exclusive conversation about this discovery is Dr. Timothy Vartanian, who leads the team that made the discovery, and Dr. Richard Rudick, whose career has focused on experimental therapeutics for MS, playing a key role in the development of both Avonex and Tysabri.
We're also talking about a stem cell therapy called MSC-NP that, in a Phase 1 clinical trial, delivered positive outcomes among people living with progressive MS.
We'll tell you about a study that demonstrated why EDSS alone does not accurately define an individual's MS journey.
We're sharing news from the International Progressive MS Alliance about a new research pipeline that will focus on improving well-being for people living with progressive MS.
And we'll tell you where you can catch a replay of the International Progressive MS Alliance's latest webcast, Developing Treatments to End MS Progression.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Is this the cause of MS? :22
STUDY: MSC:NP, a stem cell therapy for MS, delivers a positive outcome among people living with progressive MS 1:33
STUDY: Does EDSS tell the whole story of your MS status? 5:03
The International Progressive MS Alliance funds a research pipeline focused on improving well-being among people living with progressive MS 8:42
Webcast Replay: Developing Treatments to End MS Progression 10:24
Dr. Richard Rudick and Dr. Timothy Vartanian discuss a new discovery that may lead scientists to the cause of MS 11:36
Share this episode 29:25
Have you downloaded the free RealTalk MS app? 29:46
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/292
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Epsilon Toxin-Producing Clostridium Perfringens Colonize the MS Gut and Epsilon Toxin Overcomes Immune Privilege https://www.jci.org/articles/view/163239
STUDY: Mesenchymal Stem Cell-Derived Neural Progenitors Attenuate Proinflammatory Microglial Activation Via Paracine Mechanisms https://futuremedicine.com/doi/10.2217/rme-2023-0005
STUDY: Cognitive Impairment, Fatigue and Depression in Multiple Sclerosis: Is There a Difference Between Benign and Non-Benign MS? https://msard-journal.com/article/S2211-0348(23)00134-7/fulltext#%20
International Progressive MS Alliance: Well-Being in Multiple Sclerosis Research Funding Opportunity https://progressivemsalliance.org/2023/03/15/well-being-in-multiple-sclerosis-research-funding-opportunity
Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance https://journals.sagepub.com/doi/pdf/10.1177/1352458521999970
Webcast Replay: Developing Treatments to End MS Progression https://www.facebook.com/watch/live/?ref=watch permalink&v=748824966910470
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 292 Guests: Dr. Richard Rudick and Dr. Timothy Vartanian
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
To tell or not to tell. When it comes to disclosing your MS to friends and family, that is the question. Choosing when to disclose and to whom to disclose is a deeply personal decision. Joining me to talk about some of the risks and benefits of disclosing your diagnosis is Dr. Victoria Leavitt, a clinical neuropsychologist, researcher, and assistant professor of neuropsychology at Columbia University.
Well also tell you about a just-announced collaboration to develop an Epstein-Barr Virus vaccine (and we'll tell you why that could be a huge step toward ending MS forever!)
We're sharing the details behind the MS International Federation's application to have three MS disease-modifying therapies added to the World Health Organization's list of essential medicines.
We'll tell you how a study that tested a fall prevention program for people living with MS who used a wheelchair or scooter full-time may have failed...and yet succeeded.
We're sharing the results of a study that set out to determine whether people over 50 who were living with MS were increasing their use of health care services because of their MS or simply because they were aging.
And we'll tell you about a study that focused on the psychosocial impact of MS on children who had a parent living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Disclosing Your MS :22
Merck teams up with ModeX Therapeutics on an EBV vaccine 1:10
The MSIF applies to have 3 DMTs added to the WHO list of essential medicines 3:22
STUDY: A fall prevention program for people with MS who are full-time wheelchair or scooter users 6:47
STUDY: Health care usage among people over 50 who are living with MS 9:33
STUDY: The psychosocial impact of MS on children with a parent living with MS 12:02
Dr. Victoria Leavitt discusses the risks and rewards associated with disclosing your MS to friends and family 15:24
Share this episode 32:35
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Just copy this link & paste it into your text or email: https://realtalkms.com/290
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Editorial: Toward Equitable Access to Treatment for Multiple Sclerosis https://thelancet.com/action/showPdf?pii=S1474-4422%2823%2900041-8
STUDY: Online Delivery of the Individualized Reduction of Falls Intervention for Persons with Multiple Sclerosis Who Use a Wheelchair or Scooter Full-Time: A Pilot Study https://meridian.allenpress.com/ijmsc/article/25/2/82/491441/Online-Delivery-of-the-Individualized-Reduction-of
STUDY: Outcomes and Health Care Service Use in Adults 50 Years and Older With and Without Multiple Sclerosis https://meridian.allenpress.com/ijmsc/article/25/2/56/486192/Outcomes-and-Health-Care-Service-Use-in-Adults-50
STUDY: The Psychosocial Impact of Parental Multiple Sclerosis on Children and Adolescents: A Systematic Review https://meridian.allenpress.com/ijmsc/article/25/2/63/487609/The-Psychosocial-Impact-of-Parental-Multiple
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 291 Guest: Dr. Victoria Leavitt
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
If you're a regular listener, you've heard me say that the things that people affected by MS want the most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, functions of public policy. The people who decide whether we get these things are our elected officials at both the state and federal level. That's why advocacy should be a high priority for everyone affected by MS.
Make no mistake. MS advocacy delivers real results. Joining me in exploring how advocacy drives changes that improve the lives of people living with MS, and why you may want to consider becoming an MS activist, are Holly Pendell, the National MS Society's Associate Vice-President of Advocacy and MS activist Angel Hardy Heinz.
Ready to learn more about MS advocacy? You can take the next step from the comfort of your own home. We're sharing the details of next week's virtual MS Activist Rally.
We'll tell you about a study that found a Mediterranean Diet could have a positive impact on cognition among people living with MS
You'll learn about a clinical trial that's currently underway to determine whether aerobic exercise can promote myelin repair.
We're sharing the details about an upcoming International Progressive MS Alliance webcast that's focused on developing treatments for progressive MS.
And we'll tell you how high school seniors or college graduates who are affected by MS can apply for an Oscar the MS Monkey academic scholarship.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're all about MS advocacy :22
The virtual MS Activist Rally takes place March 28. Are you registered??? 5:22
STUDY RESULTS: Mediterranean Diet Is associated with cognition in MS 8:01
A clinical trial is underway to determine whether aerobic exercise can promote myelin repair 9:43
The International Progressive MS Alliance is hosting a webcast focused on developing treatments for progressive MS 11:01
Oscar the MS Monkey is accepting academic scholarship applications from high school seniors and college graduates who are affected by MS 11:57
Holly Pendell, the National MS Society's Associate Vice-President of Advocacy and MS activist Angel Hardy Heinz discuss how advocacy makes a real difference in the lives of people affected by MS, and how you can get involved 13:49
Share this episode 27:12
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society MS Activist Rally registration https://p2a.co/Rally2023
STUDY: Mediterranean Diet is Associated with Cognition in Multiple Sclerosis https://aan.com/MSA/Public/Events/AbstractDetails/52954
Webcast: Developing Treatments to End MS Progression registration https://msif.org/progressiveMSwebcast
Oscar the MS Monkey Academic Scholarship Application http://mroscarmonkey.org/site/Scholarship%20Application%202023.pdf
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 290 Guests: Holly Pendell and Angel Hardy Heinz
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
For many people, one of the most challenging aspects of living with MS is living with uncertainty. Living with unanswerable questions like, "Is today the day I experience a relapse?" "Will my disability worsen?" "Will I be able to continue working?" "Will I be able to take care of my family?"
These are all very real questions, and while there may not be answers for them today, there are steps you can take and strategies you can adopt to ensure that you're managing and minimizing the uncertainty of living with MS.
Joining me to talk about her journey as a mom living with MS and to share how she's learned to cope with the uncertainty of MS is MS advocate Sarah Wolfe. Also joining our conversation with specific strategies for living your best life despite the uncertainties of MS is Dr. Laura Hancock, a neuropsychologist at the University of Wisconsin School of Medicine and Public Health.
It's a big topic, and I'm devoting this entire MS Awareness Week episode of RealTalk MS to my conversation with Sarah Wolfe and Dr. Laura Hancock.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's MS Awareness Week and we're talking about living with the uncertainty of MS :22
MS advocate Sarah Wolfe and Neuropsychologist Dr. Laura Hancock discuss the many different facets of successfully living with the uncertainty of MS 3:38
Share this episode 39:55
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
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RealTalk MS Episode 289 Guests: Sarah Wolfe and Dr. Laura Hancock
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When you visit the Oceans of Hope U.K. website, it reads, "Oceans of Hope is for people with MS, led by people with MS." It goes on to say, "Our aim is to offer people from all over the world the opportunity to experience sailing as a way of learning new skills and restoring the self-confidence which can be stolen by MS."
The folks at Oceans of Hope U.K. can make that claim with high confidence. My guest today is the founder of Oceans of Hope U.K., Robert Munns, who lives with MS himself. Robert had what he describes as a life-changing experience while serving as a member of the crew on what turned out to be an unforgettable sailing adventure. Robert's story is one you won't want to miss.
Today, Oceans of Hope U.K. offers anyone living with MS the opportunity to experience that same personal transformation that Robert experienced.
When you review your MRI scans with your neurologist, the focus is on those white matter lesions that characterize MS. However, study results announced at the 2023 ACTRIMS Forum show that white matter lesions are not the cause of severe MS disability. We're breaking down this game-changing research.
And speaking of game changers, we're sharing the details of a small, portable MRI device that can effectively image MS lesions.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: News from the 2023 ACTRIMS Forum and a story that I hope you find as compelling as I did :22
Study results show that white matter lesions are not the cause of severe MS disability 2:22
A portable less invasive MRI device capable of imaging MS lesions 6:33
Meet Robert Munns, the founder of Oceans of Hope UK 9:25
Share this episode 37:20
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Just copy this link & paste it into your text or email: https://realtalkms.com/288
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Oceans of Hope U.K. https://oceansofhope.co.uk
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 288 Guest: Robert Munns
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Last week in San Diego, the Americas Committee for Treatment and Research in Multiple Sclerosis convened their annual meeting, the ACTRIMS Forum. One of the highlights of this meeting is the presentation of the Barancik Prize, awarded in recognition of exceptional innovation in MS research.
This year's winner of the Barancik Prize is Dr. Ruth Ann Marrie, a clinician scientist at the University of Manitoba. The Barancik Prize is administered by the National MS Society, and this year's award recognizes Dr. Marrie's landmark discoveries that deepen our understanding of how and when MS evolves.
During the ACTRIMS Forum, Dr. Marrie joined me to discuss her groundbreaking research and the impact it's had on MS care.
If you're a regular listener, you've probably heard me say that the things that people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials at the state and federal level. That's why advocacy is a high priority for people affected by MS.
The National MS Society's Public Policy Conference takes place next week, March 6-8, in Washington, D.C. Joining me to discuss how advocacy makes a real difference in influencing pending legislation, while giving us a preview of what we can expect to see and hear at this year's conference, is the National MS Society's Executive Vice-President for Advocacy and Healthcare Access, Bari Talente.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're back from the ACTRIMS Forum and a conversation with this year's winner of the Barancik Prize for innovation in MS research :22
Dr. Ruth Ann Marrie discusses some of her groundbreaking research and its impact on MS care 1:57
We are one week away from the National MS Society's Public Policy Conference in Washington, D.C. 17:18
Bari Talente, the National MS Society's Executive Vice-President of Advocacy and Healthcare Access, discusses the importance of advocacy, while sharing a preview of the legislative issues that MS activists will be advocating for next week on Capitol Hill 18:18
Share this episode 32:25
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Just copy this link & paste it into your text or email: https://realtalkms.com/287
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode 287 Guests: Dr. Ruth Ann Marrie and Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Two years ago, the National MS Society made a public commitment to do more to ensure that the MS movement was open to and reflective of everyone affected by MS.
When you stop to consider issues like access to healthcare or MS clinical research, it quickly becomes apparent that diversity, equity, and inclusion aren't only organizational goals for the MS Society. They also address some of the systemic barriers that directly impact the quality of MS care for members of historically marginalized communities who are living with MS.
Joining me in exploring how the MS Society is embedding the principles of diversity, equity, and inclusion into every aspect of the MS movement is the National MS Society's Vice-President of Diversity, Equity, and Inclusion, Neisha Fredericks.
We're also sharing the details of research conducted at the University of Virginia that identified a specific contributor to the autoimmune response and neuroinflammation that characterize MS.
And we'll give you an up-close and personal illustration of how artificial intelligence (AI) will impact MS research and treatment.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Embedding diversity, equity, and inclusion into the MS movement :22
Researchers identify a neuroinflammation "regulator" lurking in the gut microbiome 1:28
Artificial intelligence will have an impact on virtually every aspect of MS research and care 4:45
Neisha Fredericks, the National MS Society's Vice-President of Diversity, Equity, and Inclusion, discusses the work that's taken place and the work still to be done to ensure that the MS movement is open to and reflective of everyone affected by MS 9:38
Share this episode 32:13
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Just copy this link & paste it into your text or email: https://realtalkms.com/286
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: The Activity of the Aryl Hydrocarbon Receptor in T Cells Tunes the Gut Microenvironment to Sustain Autoimmunity and Neuroinflammation https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3002000
ChatGPT https://openai.com/blog/chatgpt
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 286 Guest: Neisha Fredericks
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Between 3 and 5% of the people living with MS are diagnosed before their sixteenth birthday. In many respects, pediatric MS is just like MS in adults. But it carries with it a distinct set of what I call social complications that can feel even more challenging to navigate than MS itself.
Just think back to the awkwardness of your pre-teen and teenage years. The pressures of school, friends, and dating are a lot for any kid to contend with. And that's without having to think about living with a chronic disease like multiple sclerosis.
Joining me for what I consider to be a masterclass in pediatric MS is Dr. Brenda Banwell. Dr. Banwell is Chief of the Division of Neurology and Co-Director of the Neuroscience Center at Children's Hospital of Philadelphia, and one of the foremost experts on pediatric MS in the world.
We're also sharing the details of very encouraging research that sheds new light, as well as provides new evidence, about primary progressive MS, suggesting a new pathway for future treatments.
We'll tell you about Healthy Aging in MS, the new clinical and research initiative at the University of Texas at Austin Dell Medical School.
And we'll share what the latest research is telling us when it comes to answering the question, "Should you discontinue your disease-modifying therapy once you turn 60?"
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: It's a masterclass in pediatric MS :22
Researchers take a major step forward in understanding and potentially treating primary progressive MS 2:01
University of Texas at Austin Dell Medical School launches Healthy Aging in MS initiative 6:49
Is it safe to stop your disease-modifying therapy as you age? Here's what the latest research is telling us 8:58
Dr. Brenda Banwell takes us on a deep dive into pediatric-onset MS 13:05
Share this episode 37:05
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Just copy this link & paste it into your text or email: https://realtalkms.com/285
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Cerebrospinal Fluid Immunoglobulins in Primary Progressive Multiple Sclerosis are Pathogenic https://academic.oup.com/brain/advance-article/doi/10.1093/brain/awad031/7024973
STUDY: Discontinuation of Disease-Modifying Therapy in MS Patients Over 60 Years Old and Its Impact on Relapse Rate and Disease Progression https://sciencedirect.com/science/article/abs/pii/S0303846723000288
RealTalk MS Episode 255: Aging with MS with Dr. John Corboy https://realtalkms.com/255
PEDIATRIC MS RESOURCES:
National MS Society Information and Resources on Pediatric MS https://nationalmssociety.org/pediatricms
Oscar the MS Monkey In-Person Camp and Retreats for Kids with MS and Their Families https://mroscarmonkey.org
Network of Pediatric Multiple Sclerosis Centers https://usnpmsc.org
iConquer MS Kids & Teens https://kidsandteens.iconquerms.org/kidsandteens
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 285 Guest: Dr. Brenda Banwell
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
MS can sometimes feel isolating. And the ironic thing about those feelings of isolation is that you can experience them even when you're with other people. It's the feeling that, while everyone is being supportive, nobody really gets it. They've never experienced what it's like to actually live with MS. That's why connecting with others who are living with MS can be such a difference-maker.
My guests in this episode are Debby Bennett, the Manager of Community Engagement at the National MS Society, and Ricky Maxwell, an MS Society self-help group member and leader, and we're talking about how and where you can find support and connect with others who can better understand some of the things you might be going through.
We're also sharing the details of the National MS Society's latest $7.8 million dollar investment in new research projects aimed at stopping MS progression, restoring lost function, and ending MS forever.
We'll tell you about a study that revealed a link between sleep and cognitive issues among people living with MS.
You'll hear about the results of a study that showed how cognitive rehabilitation therapy and mindfulness might improve cognitive dysfunction for people with MS.
We'll tell you about this year's recipient of the Barancik Prize for Innovation in MS Research (and we'll explain what makes her such an outstanding choice!)
The National MS Society's 2023 Pathways to Wellness virtual program is just two days away! We'll tell you how and where you can still register for the event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The value of connecting with others who are living with MS :22
The National MS Society invests $7.8 million in new research projects 1:49
Research reveals link between sleep and cognitive issues among people with MS 4:17
Study shows that cognitive rehabilitation therapy and mindfulness are effective in improving cognition among people with MS 6:58
Dr. Ruth Ann Marrie is this year's recipient of the Barancik Prize for Innovation in MS Research 9:42
The 2023 Pathways to Wellness virtual event is two days away 12:57
Debby Bennett and Ricky Maxwell discuss how and why you'll want to connect with others who are living with MS 14:43
Share this episode 27:09
Have you downloaded the free RealTalk MS app? 27:30
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Just copy this link & paste it into your text or email: https://realtalkms.com/284
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Research Summary: Fourteen New Research Projects Funded by the National MS Society https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/research/summaries-of-newly-funded-research-projects-january-2023.pdf
RealTalk MS Episode 238: The Pathways to Cures Research Roadmap with Dr. Carol Whitacre and Professor Alan Thompson https://realtalkms.com/238
STUDY: Pathways Between Multiple Sclerosis, Sleep Disorders, and Cognitive Function: Longitudinal Findings from the Nurses' Health Study https://journals.sagepub.com/doi/epub/10.1177/13524585221144215
RealTalk MS Episode 259: How Lack of Sleep Affects MS (And What You Can Do About It!) with Dr. Katie Siengsukon https://realtalkms.com/259
STUDY: Cognitive Rehabilitation and Mindfulness Reduce Cognitive Complaints in Multiple Sclerosis (REMIND-MS): A Randomized Controlled Trial https://www.sciencedirect.com/science/article/pii/S2211034823000330
Pathways to Wellness: Emotional, Spiritual, and Social Wellness Virtual Program https://nationalmssociety.org/Resources-Support/Library-Education-Programs/PathwaystoWellness
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 284 Guest: Faith Bigam
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Faith Bigam was diagnosed with MS in 2014, when she was 12 years old. She didn't know what MS was because, well, why would any 12-year-old kid know what MS is? But Faith quickly learned and just a year later, she had already become an Ambassador for the MS Society of Canada.
The initial years of Faith's MS journey weren't easy, and I'm not sure how someone of any age who had less resilience might have handled them. But I'm pretty sure that next to the word "resilience" in the dictionary you'll find a picture of Faith Bigam. And I promise you, there are some things about Faith that are going to surprise you.
The National MS Society's 2023 Pathways to Wellness virtual program takes place February 9th. We'll give you the details and tell you how to register for this free event.
You'll hear about L'Oreal's "smart" lipstick applicator. It's the first product in a line designed to make the task of putting on makeup accessible to people living with disabilities.
And we'll tell you what researchers discovered in a study that focused on analyzing the gut microbiome of young people living with pediatric MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Meet the embodiment of resilience and adaptability, Faith Bigam :22
Learn more and register for the 2023 Pathways to Wellness in MS virtual program 1:15
L'Oreal develops an adaptive lipstick application device (and why that matters!) 2:21
A research team analyzed the gut microbiome of young people living with pediatric MS 4:27
My conversation with Faith Bigam 7:56
Share this episode 31:07
Have you downloaded the free RealTalk MS app? 31:28
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Pathways to Wellness: Emotional, Spiritual, and Social Wellness Virtual Program https://nationalmssociety.org/Resources-Support/Library-Education-Programs/PathwaystoWellness
Metagenomic Analysis of the Pediatric-Onset Multiple Sclerosis Gut Microbiome Explained https://tremlettsmsresearchexplained.wordpress.com/2023/01/05/metagenomic-analysis-of-the-pediatric-onset-multiple-sclerosis-gut-microbiome-explained
STUDY: Metagenomic Analysis of the Pediatric-Onset Multiple Sclerosis Gut Microbiome https://n.neurology.org/content/98/10/e1050
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 283 Guest: Faith Bigam
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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The CDC tells us that 36 million falls are reported each year, resulting in 3 million adults being transported to the emergency room and 32,000 adults dying from their falls.
Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and more than 30% fall multiple times. Falling can cause broken bones, brain damage, and worse. That's why I'm dedicating this entire episode of RealTalk MS to fall prevention.
Dr. Sara Migliarese joins me with tips, tools, and strategies you can use to prevent falls while keeping yourself safe and more independent. Dr. Migliarese is a Board Certified Neurologic Clinical Specialist, and a Professor in the Department of Physical Therapy at Winston-Salem State University where she is also the Director of the Neurologic Clinical Residency Program.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Fall prevention could be a life-saver :22
Dr. Sara Migliarese shares tips, tools, and strategies for preventing falls (and tells you what to do when you can't!) 2:08
Share this episode 31:12
Have you downloaded the free RealTalk MS app? 31:32
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Just copy this link & paste it into your text or email: https://realtalkms.com/282
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society: Free from Falls Program https://nationalmssociety.org/Resources-Support/Library-Education-Programs/Free-from-Falls
Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 282 Guest: Dr. Sara Migliarese
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Today, we're talking about a topic that you've told me is the topic that you'd most like me to cover on this podcast -- autologous hematopoietic stem cell transplantation, or HSCT. And I'm dedicating this entire episode of RealTalk MS to a deep dive on the subject with the man who pioneered autologous HSCT as a treatment for relapsing-remitting MS, Dr. Richard Burt.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Autologous HSCT with Dr. Richard Burt :23
Dr. Richard Burt takes us on a deep dive into autologous HSCT for MS :57
Share this episode 54:38
Have you downloaded the free RealTalk MS app? 54:59
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Just copy this link & paste it into your text or email: https://realtalkms.com/281
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Amazon: Everyday Miracles: Curing Multiple Sclerosis, Scleroderma, and Autoimmune Diseases by Hematopoietic Stem Cell Transplant by Dr. Richard Burt https://www.amazon.com/Everyday-Miracles-Scleroderma-Autoimmune-Hematopoietic/dp/B0BRNTJZ9X/ref=sr_1_1
National MS Society: aHSCT in MS https://nationalmssociety.org/Treating-MS/aHSCT
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 281 Guest: Dr. Richard Burt
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Last week, in Episode 279 of RealTalk MS we talked with Professor Tanja Kuhlmann about a new framework for researching, diagnosing, and treating MS that was proposed by the International Advisory Committee on Clinical Trials in Multiple Sclerosis. This proposed framework represents the next evolutionary step in diagnosing and treating MS.
Joining me this week to talk about how this proposed framework will impact people living with MS is the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee.
For many people, the new year inspires familiar resolutions to start a diet. If you're searching for the "MS Diet", we're sharing an update on what the experts have learned about diet and MS, and what they recommend.
The National MS Society's Pathways to Wellness virtual program takes place February 9th. We'll give you the details and tell you how to register for this free event.
And you'll hear about Frequency Therapeutics' remyelination project for people living with MS. Clinical trials are planned to begin this year!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: What the proposed framework for diagnosing, and treating MS means for people living with MS :22
What experts have learned about diet and MS 1:50
Why you'll want to register for Pathways to Wellness in MS 4:56
Frequency Therapeutics remyelination project 6:02
Dr. Tim Coetzee discusses how the proposed framework for diagnosing, and treating MS will take MS care to the next level 8:43
Share this episode 30:19
Have you downloaded the free RealTalk MS app? 30:40
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Just copy this link & paste it into your text or email: https://realtalkms.com/280
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279
National MS Society: Diet and MS https://nationalmssociety.org/Research/Research-News-Progress/Diet
Pathways to Wellness: Emotional, Spiritual, and Social Wellness Virtual Program https://nationalmssociety.org/Resources-Support/Library-Education-Programs/PathwaystoWellness
Frequency Therapeutics Multiple Sclerosis Project https://frequencytherapeuticstx.com/pipeline-programs/multiple-sclerosis-program
Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 280 Guest: Dr. Tim Coetzee
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Every episode of RealTalk MS features updates and reports about emerging science. And, as you listen, some of you may wonder, 'When will these scientific achievements benefit me? When will these breakthroughs and advancements make their way from the laboratory workbench to the clinic?' That's exactly what the panel of MS experts who comprise the International Advisory Committee on Clinical Trials in MS are proposing in a new framework that leverages what scientists are continuing to learn and re-defines how we talk about MS, research MS, diagnose MS, and treat MS. The new framework being recommended by the committee is broadly outlined in a paper that was published about 8 weeks ago. Joining me to discuss what this proposed framework is all about is the paper's lead author, Professor Tanja Kuhlmann.
We're also talking about the new high-efficacy disease-modifying therapy that received its FDA approval last week.
We're sharing the details behind the FDA's approval of a Phase 3 clinical trial for Masitinib, an investigational therapy for treating progressive MS.
We'll tell you about Abata Therapeutics' first T-cell treatment candidate for treating progressive MS.
And you'll hear about the results of a study that compared the outcome of treating people living with secondary progressive MS with autologous hematopoietic stem cell transplantation (aHSCT) versus treatment by disease-modifying therapies.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Experts recommend a new framework for researching, diagnosing, and treating MS :22
FDA approves Ublituximab (Briumvi), an anti-cd20 disease-modifying therapy 1:12
FDA approves Phase 3 clinical trial for Masitinib as a treatment for progressive MS 4:35
Abata Therapeutics announces its first T-cell therapy candidate to treat progressive MS 7:20
Study shows aHSCT more effective than DMTs in treating secondary progressive MS 10:14
Professor Tanja Kuhlmann discusses a new framework for researching, diagnosing, and treating MS 13:51
Share this episode 26:37
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Just copy this link & paste it into your text or email: https://realtalkms.com/279
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Ublituximab versus Teriflunomide in Relapsing Multiple Sclerosis https://nejm.org/doi/full/10.1056/NEJMoa2201904
AB Science https://ab-science.com
RealTalk MS Episode 205: A Potentially Transformational Therapy for Progressive MS with Samantha Singer and Dr. Richard Ransohoff https://realtalkms.com/205
STUDY: Hematopoietic Stem Cell Transplantation in People with Active Secondary Progressive MS https://n.neurology.org/content/early/2022/12/21/WNL.0000000000206750
Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 279 Guest: Professor Tanja Kuhlmann
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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When people ask me how I go about deciding who to interview for this podcast, my answer has always been the same. I look for difference-makers. People whose efforts are making a real difference in the MS community. They might be a researcher, clinician, rehabilitation specialist, MS Navigator, fundraiser...it's a long list. A difference-maker might also be someone who motivates and inspires all of us by the way they choose to embrace life.
My favorite conversation this year was with just that kind of person. And, judging from the many thousands of you who listened to that conversation and the feedback so many of you shared with me, it was one of your favorite convesations, too.
In 2007, Tyler Campbell was a running back at San Diego State, looking forward to a real shot at a career in the NFL. Instead, Tyler's life was turned upside down by an MS diagnosis.
For some people, that would have been the end of the story. For Tyler, it was only the beginning.
We have a lot to talk about! Are you ready for RealTalk MS??!
Re-visiting my favorite conversation of 2022 :23
Tyler Campbell takes us through his transformational journey from the football field to becoming a motivational and inspirational leader in the MS movement. 1:56
Share this episode 27:40
Have you downloaded the free RealTalk MS app??? 28:00
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Just copy this link & paste it into your text or email: https://realtalkms.com/278
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 278 Guests: Tyler Campbell
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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For me, the holiday season is a time for joy, celebration, and reflection. And when I reflect upon the advances in MS research that we've seen in the past year, it's hard not to feel encouraged. 2022 will be remembered as the year when the National MS Society published the Pathways to Cures research roadmap, a bold initiative focused on stopping MS progression, restoring lost function, and ending MS forever.
I talked about this pivotal moment in the history of MS research with Dr. Carol Whitacre and Professor Alan Thompson, and they each shared their insights into what the Pathways to Cures research roadmap was all about and what this historic initiative means for people affected by MS. My conversations with Dr. Whitacre and Professor Thompson were two of the most important conversations that I had in 2022 and, as the year draws to a close, I think they're worth revisiting.
We have a lot to talk about! Are you ready for RealTalk MS??!
Re-visiting the publication of the Pathways to Cures research roadmap :22
Dr. Carol Whitcare discusses how Pathways to Cures came about and what it means for people living with MS 2:36
Professor Alan Thompson discusses the current status of MS research and what has to happen next to stop MS progression, restore lost function, and end MS forever 15:17
Share this episode 32:55
Have you downloaded the free RealTalk MS app??? 33:16
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Just copy this link & paste it into your text or email: https://realtalkms.com/277
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 277 Guests: Dr. Carol Whitacre and Professor Alan Thompson
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century.
In this special episode of RealTalk MS, I'm joined by Professor Peter Rieckmann, Stanca Potra, and Maria Paz Giambastiani. We're taking a look back at the advances that have been made in treating MS and focusing our eyes ahead to determine the work that still needs to be done.
Professor Rieckmann is the Chief Physician of Neurology and Clinical Neuroplasticity at the Medical Park Loipl, Germany. Professor Rieckmann has also served as the Chair of the MS in the 21st Century initiative since its inception in 2011.
Maria Paz Giambastiani has been living with MS for the past 17 years. She's a columnist, writing about disability and inclusion for More Than Words magazine. Maria has also authored several books and publications focused on MS.
Stanca Potra is the founder of the Smile Center, a support and counseling center for people living with MS in Romania. Stanca has been living with MS for the past 9 years.
Professor Rieckmann, Stanca, and Maria are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Some of you might remember that at the end of October, I was in Amsterdam, attending the 2022 ECTRIMS Congress. ECTRIMS is an acronym for the European Committee for Treatment and Research in Multiple Sclerosis, and their annual scientific congress is the largest MS research conference in the world. As the conference ended, I sat on some steps outside the conference center alongside the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo. And Dr. Bebo shared his initial impressions of some of the research that had been presented over the 3-day conference. If you missed that episode of the podcast, you may want to listen to episode number 270 of RealTalk MS
After having had a few weeks to consider all of the research that was presented at the ECTRIMS Congress, Dr. Bebo is back to share his final ECTRIMS research update, and talk about the rest of the research that caught his attention at the 2022 ECTRIMS Congress.
You'll also meet the Co-Chair of the MS Society Southern California chapter's Emerging Leaders Board and this year's recipient of the Dorothy Corwin Spirit of Life Award, Kristen Karasek. Kristen was diagnosed with MS at the age of 24, but, as will become clear to you, she hasn't let MS get in her way. I think you'll find Kristen's positivity to be infectious.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Part Two of our 2022 ECTRIMS research roundup with Dr. Bruce Bebo :22
My conversation with the Co-Chair of the MS Society Southern California Chapter's Emerging Leaders Board and Dorothy Corwin Spirit of Life recipient, Kristen Karasek 1:37
The National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, discusses the research that caught his attention at the largest MS research conference in the world 16:20
Share this episode 35:21
Download the free RealTalk MS app 35:41
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Just copy this link & paste it into your text or email: https://realtalkms.com/276
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Episode 270: From the 2022 ECTRIMS Congress with Dr. Bruce Bebo https://realtalkms.com/270
Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 276 Guests: Dr. Bruce Bebo, Kristen Karasek
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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The first step in living well with MS is establishing a treatment plan with your neurologist or MS specialist. And a disease-modifying therapy, or DMT, should be the foundation of that plan. Joining me to talk about what disease-modifying therapies can and can't do, and how to work with your doctor to find the best MS medication for you is the Clinical Pharmacy Specialist in Multiple Sclerosis and Neuroimmunology at VCU Health in Richmond Virginia, Ross Tingen.
Why are we talking about global warming on a podcast about MS? Because we're talking about the results of a study that show how climate change has a negative impact on people living with multiple sclerosis and other neurological conditions.
We're also sharing the results of a study that demonstrate the sobering reality of the association between socioeconomic status and death among people living with MS.
If you're on Tecfidera, you'll want to hear about a study that focused on how alcohol may change the efficacy of your DMT.
And we'll tell you about a study that revealed significant differences in how the prodromal phase of MS affects men and women at different ages. (And we'll also tell you why understanding the MS prodrome is important!)
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How to find the best MS medication for you :22
Study shows climate change impacts people living with MS 1:08
Study examines the impact of socioeconomic status on death among people with MS 3:28
Study shows alcohol dulls the metabolism of Tecfidera 7:01
Study analyzes differences due to sex and age in the MS prodrome 8:35
Ross Tingen discusses how to work with your doctor to find the best disease-modifying therapy for you 18:40
Share this episode 27:19
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Just copy this link & paste it into your text or email: https://realtalkms.com/275
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
STUDY: Impacts of Climate Change and Air Pollution on Neurologic Health, Disease, and Practice: A Scoping Reviewhttps://n.neurology.org/content/early/2022/11/16/WNL.0000000000201630
Tremlett's MS Research Explained: Low Socioeconomic Status Was Associated with a Higher Mortality Risk in Multiple Sclerosis Explained https://tremlettsmsresearchexplained.wordpress.com/category/ms-socioeconomic-status-research
STUDY: Low Socioeconomic Status Was Associated with a Higher Mortality Risk in Multiple Sclerosis https://journals.sagepub.com/doi/full/10.1177/13524585221129963
STUDY: Alcohol Inhibits the Metabolism of Dimethyl Fumarate to the Active Metabolite Responsible for Decreasing Relapse Frequency in the Treatment of Multiple Sclerosis https://journals.plos.org/plsuone/article?id=10.1371/journal. pone.0278111
Tremlett's Research Explained: Sex and Age Differences in the Multiple Sclerosis Prodrome Explained https://tremlettsresearchexplained.wordpress.com/2022/11/03/sex-and-age-differences-in-the-multiple-sclerosis-prodrome-explained
STUDY: Sex and Age Differences in the Multiple Sclerosis Prodrome Explained https://pubmed.ncbi.nlm.nih.gov/36408518
Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 275 Guest: Ross Tingen, PharmD, BCPS, MSCS
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century.
In this special episode of RealTalk MS, we're talking with Professor Dawn Langdon and David Yeandle about the impact of MS-related cognitive issues on employment.
Professor Langdon is a Professor of Neuropsychology with a special interest in cognition at the Royal Holloway University of London, in the United Kingdom. Professor Langdon is also a Trustee of the MS Trust in the U.K.
David Yeandle was diagnosed with MS in 2010. David was a Head of Employment for a major organization in the U.K., and he's a passionate advocate for helping people living with MS stay employed.
Both Professor Langdon and David are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
A quick scan of the news on any given day should remind all of us that natural disasters can strike anywhere at any time. Whether it's massive snowstorms, earthquakes, wildfires, hurricanes or floods, no one is immune when Mother Nature chooses to act up. That's why being prepared for a natural disaster is important for everyone. And if you're living with MS, it's especially important for you to have your family's emergency preparedness plan in place.
Senior Medical Advisor to National Disaster Operations at the American Red Cross, Mary Casey-Lockyer, joins me to talk about the things that people living with MS should include in their emergency preparedness plan.
We're also talking with Dr. Aaron Kesselheim, a researcher at Harvard's Brigham and Women's Hospital. And if you're on Lemtrada, Dr. Kesselheim could use your help.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Disaster Preparedness :22
If you're on Lemtrada, Dr. Aaron Kesselheim could use your help 1:43
Mary Casey-Lockery discusses disaster preparedness for people living with MS 10:49
Share this episode 31:22
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 274
Guest: Dr. Aaron Kesselheim and Mary Casey-Lockyer
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Spasticity is one of the most common symptoms of MS, impacting up to 80% of the people living with MS. It can feel like mild muscle tightness that you wish would just go away or it can be so painful and debilitating that it keeps you from moving. Dr. Michelle Cameron joins me in this episode to discuss what spasticity is and how to best manage it.
Dr. Cameron is a neurologist and physical therapist, a professor in the Department of Neurology at Oregon Health & Science University, Interim Chief of Neurology at the VA Portland Healthcare System, and Co-Director of the VA MS Center of Excellence West.
We're also talking about a new framework for thinking and talking about MS that's been proposed by an international panel of MS experts.
We'll tell you about a study that looked at polypharmacy and MS (Of course, we'll also tell you what polypharmacy is and why you should be aware of it!)
We'll share the details around the discovery of human antibodies that have been shown to prevent Epstein-Barr infection (And we'll explain why this could be incredibly important)
If you're an MS caregiver, or you know one, I'm asking for just 5 minutes of your time.
We're celebrating National Caregivers Month by breaking down the details of the National Family Caregiving Strategy that was recently submitted to Congress.
And we're celebrating the indomitable quality of the human spirit by sharing the story of Eric Domingo Roldan and his mom, Sylvia.
We have a lot to talk about! Are you ready for RealTalk MS??!
Thanksgiving is two days away! :22
This Week: Managing Spasticity 1:02
Experts propose a new framework for thinking about and talking about MS 2:07
Polypharmacy and MS 5:55
Researchers identify antibodies that prevent Epstein-Barr Virus infection 9:02
If you're an MS caregiver, or you know one, can I have 5 minutes of your time? 11:30
The 2022 National Family Caregivig Strategy 13:55
Eric Domingo Roldan and his mom, Sylvia, make it into the Guinness Book of World Records 16:34
Dr. Michelle Cameron discusses spasticity and MS 18:40
Share this episode 33:55
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Multiple Sclerosis Progression: Time for a New Mechanism-Driven Frameworkhttps://www.thelancet.com/journals/laneur/article/PIIS1474-4422(22)00289-7/fulltext
Tremlett's MS Research Explained: Polypharmacy and Multiple Sclerosis: A Population-Based Study
https://tremlettsmsresearchexplained.wordpress.com/2022/10/27/polypharmacy-and-multiple-sclerosis-a-population-based-study/
STUDY: Polypharmacy and Multiple Sclerosis: A Population-Based Study
https://journals.sagepub.com/doi/full/10.1177/13524585221122207
RealTalk MS Episode 229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi
https://realtalkms.com/229
RealTalk MS Episode 231: Evidence Shows EBV Triggers MS: Understanding the Impact of this Breakthrough Research with Dr. Bruce Bebo
https://realtalkms.com/231
STUDY: Epstein-Barr Virus gH/gL Has Multiple Sites of Vulnerability for Virus Neutralization and Fusion Inhibition
https://cell.com/immunity/fulltext/S1074-7613(22)00544-1
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
2022 National Strategy to Support Family Caregivers
https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers.pdf
Eric Domingo Roldan's Instagram Handle
@eeRiicbcn
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 273
Guest: Dr. Michelle Cameron
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
This week's episode of RealTalk MS was recorded in front of a LIVE audience at the National MS Society's 2022 Leadership Conference.
Joining me in this special episode are Lori Turley, who was diagnosed with MS in 2021, and whose commitment to fundraising and advocacy is already producing dividends, and Dr. Bradley Zuchero, an MS Society-funded research fellow whose lab has discovered the biological mechanism that produces myelin in our central nervous system.
In addition to my questions, our audience has questions for my guests, as well!
We have a lot to talk about! Are you ready for RealTalk MS??!
We're LIVE from the National MS Society's 2022 Leadership Conference in Dallas, Texas :23
MS Society volunteer Lori Turley talks about her fundraising and advocacy efforts, and why they're important 1:38
MS Society-funded research fellow, Dr. Bradley Zuchero, talks about his lab's discovery of the mechanism that brain cells use to produce myelin 13:20
Our live audience has questions for Dr. Zuchero and Lori 22:11
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 272
Guest: Lori Turley and Dr. Bradley Zuchero
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When we talk about managing MS on this podcast, we're usually talking about treatments based upon traditional Western medicine. But there are also complementary therapies that have been shown to improve MS symptoms. And acupuncture is one of those complementary therapies that's been shown to be effective in treating pain, spasticity, numbness or tingling, bladder problems, and depression. Joining me to talk about the therapeutic effects of acupuncture in treating MS symptoms are Jennifer Mohr-Boscaino and Ken Bandler. Jennifer is a licensed acupuncturist and the founder of Precious Health Acupuncture in New York, and Ken is a public relations executive who lives with MS and receives acupuncture treatment for his MS symptoms.
We're also talking about how a large MS clinical trial has been able to increase minority participation, and how other MS research studies may be able to learn from this example.
We'll tell you about a study that showed the benefit of COVID-19 mRNA vaccinations and boosters for people living with MS who are on b-cell depleting therapies, like Ocrevus.
And if you're an MS caregiver, or you know one, I'm asking for a favor that will cost you just 5 minutes of your time.
We have a lot to talk about! Are you ready for RealTalk MS??!
Next Week: RealTalk MS recorded LIVE at this week's National MS Society 2022 Leadership Conference :22
Today: It's Election Day in the U.S. Please vote! :41
Your Question Answered: How Big is the ECTRIMS Congress? 1:30
This Week: Acupuncture and MS 3:01
Pragmatic trials may increase minority participation in MS research 4:03
Research supports COVID-19 mRNA vaccination and booster for people with MS on Ocrevus 7:10
If you're an MS caregiver, or you know one, please help me out 10:26
Jennifer Mohr-Boscaino and Ken Bandler discuss the benefits of acupuncture for managing some MS symptoms 14:04
Share this episode 29:02
Download the RealTalk MS app for your iOS or Android device 29:22
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Just copy this link & paste it into your text or email: https://realtalkms.com/271
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
National MS Society: Your Right to Vote and Polling Place Accessibility
https://nationalmssociety.org/Get-Involved/Advocate-for-Change/Take-Action/Voter-Info
DELIVER-MS Study
https://deliver-ms.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 271
Guest: Steffany Stern and Judy Wilson
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Last week, over 7,000 MS researchers and clinicians from more than 100 countries traveled to Amsterdam to attend the 2022 ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) Congress, the largest MS research conference in the world. As has become an annual ECTRIMS tradition on RealTalk MS, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and I took up our vantage point on the steps right outside of the convention center to discuss the research that captured Dr. Bebo's attention.
We have a lot to talk about! Are you ready for RealTalk MS??!
Greetings from the 2022 ECTRIMS Congress! :22
If you're listening in the U.S., don't forget to vote next Tuesday 1:26
Dr. Bruce Bebo shares the research that captured his attention at ECTRIMS 3:25
Share this episode 20:43
Download the RealTalk MS app for your iOS or Android device 21:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/270
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I've always thought of the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
National MS Society: Your Right to Vote and Polling Place Accessibility
https://nationalmssociety.org/Get-Involved/Advocate-for-Change/Take-Action/Voter-Info
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 270
Guest: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
A couple of months ago, the Inflation Reduction Act was signed into law. And while it touches on many different areas, it will be remembered as the most consequential healthcare bill since the Affordable Care Act. From the emails I've received, I know that many of you are wondering how and when this new law will impact what you pay for your prescription medications. The National MS Society's Vice-President of Advocacy, Steffany Stern, and MS activist Judy Wilson, join me in this episode to explain how this new law benefits people who are living with MS, who, among everyone living with MS, will see some of those benefits first, and when you will begin to see those benefits.
We're also talking about a study that showed people with progressive MS are four times more likely to experience serious infection requiring hospitalization, compared to people with relapsing-remitting MS.
We'll tell you about a machine-learning algorithm that can predict MS patient outcomes when it comes to symptoms like fatigue, depression, and sleep disturbance.
And we'll share some very sobering survey results from the MS Society in the U.K.
We have a lot to talk about! Are you ready for RealTalk MS??!
Greetings from Amsterdam! ECTRIMS kicks off this week! :22
This Week: How the Inflation Reduction Act Will Help You 1:02
People with primary progressive MS are 4 times more likely to experience serious infection 2:12
An app plus artificial intelligence predicts MS patient outcomes 5:03
The MS Society in the U.K. releases sobering survey results 9:33
MS Society V.P. of Advocacy Steffany Stern and MS activist Judy Wilson break down the specific benefits of the Inflation Reduction Act 12:17
Share this episode 33:36
Download the RealTalk MS app for your iOS or Android device 33:56
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/269
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
National MS Society: Become an MS Activist
https://nationalmssociety.org/advocacy
STUDY: Serious Infection in Patients with Relapsing and Progressive Forms of Multiple Sclerosis: A German Claims Data Study
https://msard-journal.com/article/S2211-0348(22)00749-0/fulltext
STUDY: Predicting Multiple Sclerosis Outcomes During COVID-19 Stay-at-Home Period: Observational Using Passively Sensed Behaviors and Digital Phenotyping
https://mental.jmir.org/2022/8/e38495
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 269
Guest: Steffany Stern and Judy Wilson
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
If you're on Medicare, or you get your health insurance through the healthcare.gov marketplace or one of the state health insurance exchanges, then you might already know that the annual open enrollment period is about to get underway or, in some cases, is already underway. Health insurance policies change. Physician networks change. Drug formularies often change. Deductibles change. And if you're living with MS, you can't afford to go through open enrollment assuming that the health insurance policy you have this year will be the best coverage for you next year.
Nicole Vasquez returns to the podcast to discuss the things you should carefully consider during open enrollment. Nicole is one of the National MS Society's MS Navigators and she'll be sharing information and resources that you can use to make the best health insurance decisions for yourself and your family.
Can you spare 5 minutes? I have a quick favor to ask each of you.
I'll also tell you about the Supreme Court decision that, for now, clears the way for Gilenya generics.
You'll hear about a new cell therapy being developed that will use nanotechnology to eliminate Epstein-Barr Virus (and I'll remind you why that would be a massive step forward in ending MS).
And we'll tell you about a University of Illinois research team that leveraged artificial intelligence to predict MS by observing how people walk.
We have a lot to talk about! Are you ready for RealTalk MS??!
Sharing some listener feedback :22
This Week: Open enrollment 3:06
Will you do me a quick favor? 5:06
Supreme Court clears the way for Gilenya generics 7:25
Cell therapy will use nano-technology to eliminate EBV 8:25
Research team uses AI to identify people living with MS 10:55
MS Navigator Nicole Vasquez gets you ready for open enrollment 13:57
Share this episode 32:32
Download the RealTalk MS app for your iOS or Android device 32:52
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/269
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Take the iConquer MS Caregiver Survey
https://realtalkms.com/caregiver
STUDY: A Vision-Based Framework for Predicting Multiple Sclerosis and Parkinson's Disease Gait Dysfunctions -- A Deep-Learning Approach
https://ieeexplore.ieee.org/document/9896159
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 268
Guest: Nicole Vasquez
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
It's flu season and that makes it an excellent time to talk about vaccines. People living with MS often have questions about whether a particular vaccine is good for them or whether it might carry with it the risk of a relapse or other negative health consequence. Dr. Lisa Doggett joins me to brief us on all things related to vaccines and MS. Dr. Doggett is a family doctor as well as the Senior Medical Director at HGS AxisPoint Health. She was a 2021-2022 American Academy of Family Physicians Vaccine Science Fellow, and Dr. Doggett has lived with MS since being diagnosed in 2009.
I'm also sharing my major take-away from the 2022 National Conference on Caregiving Research.
And, speaking of caregiving, we'll review the results of a study that measured the risk of family caregivers experiencing future illness and disability.
You're going to want to hear the results of a study that measured the effects of a keto diet on people living with MS.
And we'll tell you what researchers learned when they analyzed the effect of autologous hematopoietic stem cell transplantation (aHSCT) on tissue damage in the central nervous system (And we'll explain why that may be really important!).
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Vaccines and MS :22
Caregiving as a social determinant of health 1:37
Family caregivers carry a significantly higher risk of future illness and disability 5:52
The effects of a ketogenic diet on people living with MS 8:57
The impact of autologous hematopoietic stem cell therapy (aHSCT) on tissue damage in the central nervous system 11:49
Dr. Lisa Doggett discusses which vaccines are important for people living with MS, and which vaccines should be avoided 17:30
Share this episode 33:23
Download the RealTalk MS app for your iOS or Android device 33:44
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/267
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
The National Strategy to Support Family Caregivers
https://acl.gov/CaregiverStrategy
STUDY: Caregiving and Allostatic Load Predict Future Illness and Disability: A Population-Based Study
https://www.sciencedirect.com/science/article/pii/S2666354621000983
STUDY: Phase II Study of Ketogenic Diets in Relapsing Multiple Sclerosis: Safety, Tolerability, and Potential Clinical Benefits
https://pubmed.ncbi.nlm.nih.gov/35418509
STUDY: Biomarkers of Demyelination and Axonal Damage are Decreased After Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis
https://www.msard-journal.com/article/S2211-0348(22)00715-5/fulltext
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 267
Guest: Dr. Lisa Doggett
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Living with MS can make everyday run-of-the-mill tasks like bathing, cooking, and driving more challenging than they have to be. The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, joins me with a whole list of simple adjustments and easy modifications that you can make that will make the things you do every day easier. Get ready to take some notes! A lot of you have reached out to me, sharing your thoughts about Selma Blair competing on Dancing with the Stars. Collectively, your opinions illustrate the vast diversity of opinion regarding Selma's latest adventure. In this week's episode, I'm sharing some of my thoughts.
I've always said that MS doesn't affect individuals -- it affects families. This week, we're talking about a study that focused on anxiety, depression, and stress communication between people living with MS and their partners.
We'll also tell you about a study that makes the case for using artificial intelligence to accurately predict EDSS scores for people living with MS.
And we'll tell you about a drug that's been studied in clinical trials for cancer that may also show promise as a remyelination therapy.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Selma Blair on DWTS, I'm back from the 2022 Caregiving Research Conference, and simple adjustments & minor modifications that can make life with MS easier :22
Researchers analyzed anxiety, depression, and stress communication in couples affected by MS 3:28
Can artificial intelligence predict an individual's EDSS score as accurately as their neurologist? 7:37
Repurposing a drug that's been studied in clinical trials for cancer may be a step forward in remyelination for people living with MS 12:27
Dr. Kathy Zackowski returns to the podcast with a boatload of simple adjustments and minor modifications that can make managing your everyday tasks a lot easier 15:38
Share this episode 36:55
Download the RealTalk MS app for your iOS or Android device 37:16
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/266
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Psychosocial Impact of Multiple Sclerosis on Couples: Relationship Between Anxiety, Depression, and Stress Communication of Both Partners
https://journals.sagepub.com/doi/10.1177/21501319221119142
STUDY: Validation of a Machine-Learning Approach to Estimate Expanded Disability Status Scale Scores for Multiple Sclerosis
https://journals.sagepub.com/doi/10.1177/20552173221108635
STUDY: Inhibition of Chk2 Promotes Neuroprotection, Axon Regeneration, and Functional Recovery After CNS Injury
https://science.org/doi/10.1126/sciadv.abq2611
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 266
Guest: Dr. Kathy Zackowski
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Living with MS comes with its own set of sometimes significant challenges. But being in the dark, unaware of the noteworthy and remarkable advances being made in MS research is one challenge that we're learning to overcome.
Sharon Roman is a patient-partner and writer for the British Medical Journal Group. Sharon lives with MS and she also writes a blog called Tremlett's MS Research Explained. The blog features plain-English posts detailing the research being done by Professor Helen Tremlett and her team. Professor Tremlett is the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia.
Sharon joins me to talk about Professor Tremlett's pioneering research on the prodromal phase of MS, and to discuss why it's important to make MS research accessible and understandable to everyone in the MS community.
We're also sharing study results that show the key to reducing MS fatigue could be a trip to the gym.
We'll tell you about a study that measured improvements in physical disability, fatigue, and health-related quality of life among people with MS after they received stem cell therapy.
We'll tell you about the significant differences in the gut microbiome of people living with MS and what that might mean for potential new treatments.
We'll tell you about a study that discovered an interesting difference in immune cells among people living with MS. And we'll explain the riddle this poses for scientists.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The importance of making MS research accessible to people affected by MS :22
A study shows that high-intensity resistance training improves MS fatigue 2:44
A study measures the long-lasting benefits of aHSCT for people living with MS 6:31
A study identifies differences in specific bacteria levels in the gut microbiome of people living with MS 9:59
A study reveals differences in immune cells among people living with MS 13:22
Sharon Roman discusses the importance of making MS research accessible to people affected by MS 18:43
Share this episode 32:04
Download the RealTalk MS app for your iOS or Android device 32:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/265
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Tremlett's MS Research Explained
https://tremlettsmsresearchexplained.wordpress.com
STUDY: High-Intensity Resistance Training in People with Multiple Sclerosis Experiencing Fatigue: A Randomised Controlled Study
https://msard-journal.com/article/S2211-0348(22)00613-7/fulltext
STUDY: Impact of Autologous HSCT on the Quality of Life and Fatigue in Patients with Relapsing Multiple Sclerosis
https://www.nature.com/articles/s41598-022-19748-7
National MS Society: aHSCT and MShttps://nationalmssociety.org/Treating-MS/aHSCT
STUDY: Gut Microbiome of Multiple Sclerosis Patients and Paired Household Controls Reveal Associations with Disease Risk and Course
https://cell.com/cell/fulltext/S0092-8674(22)01115-1
STUDY: Broader Epstein-Barr Virus-Specific T Cell Receptor Repertoire in Patients with Multiple Sclerosis
https://rupress.org/jem/article/219/11/e20220650/231431/Broader-Epstein-Barr-virus-specific-T-cell
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 265
Guest: Sharon Roman
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
We're celebrating the 5th anniversary of RealTalk MS and we're kicking it off with my exclusive conversation with CNN national correspondent and anchor, John King. John was diagnosed with MS in 2008. However, John didn't disclose his diagnosis until 2021 -- in an unplanned moment on national television.
John shares his MS journey from the day he was diagnosed through his unplanned disclosure. And he also shares a message for anyone who is newly diagnosed with MS.
Then, we're doing something completely different! You won't want to miss the second half of this special 5th anniversary episode when listener Dawnia Baynes takes over RealTalk MS -- and interviews Jon!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: We're celebrating our 5th anniversary! :22
My exclusive conversation with CNN's John King 4:22
Welcome to the Dawnia Baynes Takeover! 23:10
Share this episode 38:08
Download the RealTalk MS app for your iOS or Android device 38:28
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/264
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 264
Guests: John King and Dawnia Baynes
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
In addition to its physical symptoms, MS can also affect your emotional well-being. Depression, persistent anxiety, and extreme irritability are common. And, just like the physical symptoms of MS, they require treatment. But people living with MS tend to focus on their physical health and, too often, end up neglecting their mental health.
Dr. Dawn Ehde joins me to talk about maintaining and strengthening your emotional well-being when you're living with MS, and she'll introduce you to a new resource that you're going to want to know about.
This Thursday, the National MS Society is hosting the virtual Hispanic/Latinx MS Experience Summit. The event is free and the sessions will be available in both English and Spanish. We're sharing the details and we'll tell you how and where to register.
We'll tell you about a study that compared how low-efficacy and high-efficacy disease-modifying medications impacted brain atrophy and disease activity.
We'll share study results that showed how choosing to be on disease-modifying medications affected mortality.
And we'll tell you about a study that focused on how MS impacts your ability to show up at work.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Managing your mental health :22
The Hispanic/Latinx MS Experience Summit takes place this Thursday, Sept 15. Here's how to register 2:20
A study compares low-efficacy and high-efficacy disease-modifying medications 3:40
A study assesses the association between being on a disease-modifying medication and surviving 7:39
A study shows that that people with MS miss work more than twice as much as healthy people 9:56
Dr. Dawn Ehde discusses how you can maintain and strengthen your emotional well-being and she introduces a new resource that you're going to want to know about 14:40
Share this episode 31:06
Download the RealTalk MS app for your iOS or Android device 31:27
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/263
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
What to Expect from Mental Health Care: A Guide for People with MS
https://www.nationalmssociety.org/getmedia/a4fa7de4-2196-4b6d-9dd5-e804ecfdb119/CD_pubs_mentalHealthGuidance_0422_FINAL.pdf
National MS Society Hispanic/Latinx MS Experience Summit
https://nmss.6connex.com/event/HispanicandLatinx/Login
STUDY: High-Efficacy Therapy Reduces Subcortical Grey Matter in Japanese Patients with Relapsing-Onset Multiple Sclerosis: A 2-Year Cohort Study
https://www.sciencedirect.com/science/article/abs/pii/S2211034822005855
STUDY: Disease-Modifying Drugs for Multiple Sclerosis and Association with Survival
https://nn.neurology.org/content/9/5/e200005
RealTalk MS Episode 211: The Ins and Outs of Employment with MS with Dr. Phillip Rumrill
https://realtalkms.com/211
STUDY: Work Productivity Loss Among Adults Aged 18-64 Years with Multiple Sclerosis in the United States: A Propensity Score Matched Study
https://www.sciencedirect.com/science/article/abs/pii/S1551741122002091?via%3Dihub
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 263
Guest: Dr. Dawn Ehde
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
The conversation between a doctor and patient is evolving from a time when that conversation was often limited to the doctor prescribing a particular disease-modifying medication and the patient silently nodding their head in agreement to something much more closely resembling a real conversation.
Shared decision-making offers the patient an opportunity to discuss their treatment goals, explain their risk tolerance, and talk about their comfort level with side effects.
But not every neurologist, nurse practitioner, or MS specialist has made the transition to shared decision-making. Some haven't even heard of it. And some patients worry that shared decision-making means they have more work to do in preparing for an appointment with their healthcare provider.
Dr. Marijean Buhse joins me to walk us through how shared decision-making works for people living with MS -- and what to do if it isn't working for you.
We'll also tell you where you can catch the video replay of an MS Society webcast that explains how and when the new drug pricing law will impact the cost of your MS medications if you're on Medicare.
We'll share the registration details for next week's Hispanic/Latinx MS Experience Summit
We'll tell you about a new research collaboration between iConquer MS, the National MS Society, and Quest Diagnostics
We'll share study results that point to a novel pathway to myelin repair.
We'll share study results that indicate the rate of MS in a country may have less to do with latitude and sun exposure and more to do with healthcare spending.
And we're giving a shout-out to A&W Canada and the MS Society of Canada for raising $1.8 million during the Burgers to Beat MS event.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How shared decision-making shapes your MS treatment plan :22
You can catch the replay of the MS Society's webcast or read the one-page "explainer" about how and when the new drug pricing law will impact your MS medications if you're on Medicare 2:47
The Hispanic/Latinx MS Experience Summit takes place on Sept 15. Here's how to register 3:41
iConquer MS teams up with the National MS Society and Quest Diagnostics for a study that will track the long-term effects of COVID-19 vaccines on b-cells and T-cells among people on anti-cd20 medications 5:14
A research team at Oregon Science & Health University are exploring a unique pathway to remyelination, with promising early results 7:41
A study shows that the rate of MS in different countries may have less to do with latitude and more to do with healthcare spending 11:57
Burgers to Beat MS beats its goal and raises $1.8 million dollars 15:06
Dr. Marijean Buhse discusses how shared decision-making works and what to do if it isn't working for you 16:45
Share this episode 30:38
Download the RealTalk MS app for your iOS or Android device 30:59
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/262
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
WEBCAST REPLAY: What Does the New Drug Pricing Law Mean for You?
https://www.youtube.com/watch?v=xQ0HueOmo0U
National MS Society Explainer: What Does the New Drug Pricing Legislation Mean for People with MS?
https://www.nationalmssociety.org/getmedia/6fa7aae3-0543-4884-b783-359b0df683aa/IRA-Drug-Pricing-Timeline.pdf
National MS Society Hispanic/Latinx MS Experience Summit
https://nmss.6connex.com/event/HispanicandLatinx/Login
STUDY: A Modified Flavonoid Accelerates Oligodendrocyte Maturation and Functional Remyelinationhttps://onlinelibrary.wiley.com/doi/10.1002/glia.23715
STUDY: Association of Multiple Sclerosis Prevalence With Sociodemographic, Health Systems, and Lifestyle Factors on a National and Regional Level
https://n.neurology.org/content/early/2022/08/24/WNL.0000000000200962
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 262
Guest: Dr. Marijean Buhse
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When you're living with MS, even the most mundane daily tasks can sometimes be challenging. There are days when opening a door, taking things out of a drawer or a cupboard, or picking something up from the floor can all seem out of reach. Those just happen to be some of the many tasks that a service dog can help you with. This week, attorney Trevor Hardy joins me to talk about the impact that his service dog, Tristan, has had on his life.
We're also reviewing what you need to know about monkeypox and MS.
We'll share the results from a Phase 3 clinical trial for Ublituximab, an investigational anti-cd20 therapy for MS.
We'll talk with Dr. Roberto-Alfonso Dunn about the results of a study that he recently headed up at Tisch Multiple Sclerosis Research Center.
And we'll share results from a study that attempted to identify specific factors at the time of diagnosis that could be predictive of future physical and mental health-related quality of life.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Study results and service dogs :23
Monkeypox and MS: What you need to know 1:13
Results from the Phase 3 clinical trial for Ublituximab 6:03
Study results offer potentially encouraging news for people with MS on b-cell depleting therapies 8:58
Clues at the time of diagnosis are shown to be predictive of future physical and mental health-related quality of life 17:20
Trevor Hardy discusses how his service dog, Tristan, has changed his life 24:33
Share this episode 36:22
Download the RealTalk MS app for your iOS or Android device 36:42
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/261
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Monkeypox and MS: What You Need to Know
https://www.nationalmssociety.org/About-the-Society/News/Monkeypox
CDC: Monkeypox Vaccines
https://www.cdc.gov/poxvirus/monkeypox/vaccines.html
STUDY: Ublituximab versus Teriflunomide in Relapsing Multiple Sclerosis
https://www.nejm.org/doi/full/10.1056/NEJMoa22019094
STUDY: Physical and Mental Health-Related Quality of Life Trajectories Among People with Multiple Sclerosishttps://n.neurology.org/content/early/2022/08/10/WNL.000000000200931
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 261
Guest: Dr. Roberto-Alfonso Dunn and Trevor Hardy
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Women are roughly 3 times more likely to develop MS compared to men. But when men develop MS, they're more likely to experience a more aggressive disease course. Men are more likely to experience motor problems, loss of coordination and balance, and cognitive difficulties.
When they experience a relapse, men are more likely to see their exacerbated symptoms continue, even during times of remission. Given these evidence-based observations, it seems sadly ironic that, as they develop MS symptoms, men are less likely to seek medical care or even a diagnosis.
Dr. Robert Shin returns to the podcast to demystify some of the riddles surrounding men and MS. Dr. Shin is a Professor in the Department of Neurology at MedStar Georgetown University Hospital, and the Director of the Georgetown Multiple Sclerosis and Neuroimmunology Center.
We're also sharing the registration details for the National MS Society's webcast, What Does the New Drug Pricing Law Mean to You?. The webcast takes place this Thursday, and you won't want to miss it.
We'll tell you about a study that may have identified an imaging biomarker that can predict future MS progression. (And we'll explain why that can make a huge difference in your MS treatment plan)
We'll share some discouraging news about the availability of Evusheld in the U.K.
We'll point you toward Elizabeth Jameson's Washington Post editorial that explains how learning to swear can be therapeutic for someone living with progressive MS.
And we'll share results from a Cleveland Clinic study that shows how a man's own definition of masculinity can get in the way of his MS treatment.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: MS and Men :22
Find out how and when the Inflation Reduction Act will impact the cost of your prescription drugs 1:41
Study demonstrates that thinning of retinal layers predicts future MS disability 2:35
U.K. opts not to buy Evusheld 5:17
Elizabeth Jameson learns the value of a well-intentioned F-bomb 6:35
Study shows how masculine ideals drive healthcare decisions for men with MS 8:39
Dr. Robert Shin discusses the specifics associated with Men and MS 12:52
Share this episode 30:56
Download the RealTalk MS app for your iOS or Android device 31:16
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/260
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Registration for National MS Society Webcast: What Does the New Drug Pricing Law Mean to You?
https://nmss.zoom.us/webinar/register/WN_auRCXBi2TGCgzHeV1CWMkw
STUDY: Retinal Thinning After Optic Neuritis is Associated with Future Relapse Remission in Relapsing Multiple Sclerosis
https://neurology.org/content/early/2022/08/01/WNL.0000000000200970
Elizabeth Jameson in the Washington Post: How I Learned that Swearing Can Be Good for the Soul
https://wapo.st/3vpRJeo
STUDY: Effects of Conformity to Masculine Norms and Coping on Health Behaviors in Men with Multiple Sclerosishttps://doi.org/10.7224/1537-2073.2020-116
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 260
Guest: Dr. Robert Shin
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
More than half of the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. Sleep-related problems can lead to additional health issues, not to mention an overall decline in quality of life and well-being.
The Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, Dr. Katie Siengsukon, returns to the podcast to talk about how sleep affects MS and what you can do about it.
We're also sharing all the ways the Inflation Reduction Act will benefit people living with MS. And we're celebrating the MS Activists who helped push this legislation through Congress!
We have some good news to share about Mark Cuban's CostPlus Drug Company.
We'll give you a quick review of where to find the show notes for each episode of RealTalk MS (and why you might want to do that!)
We're sharing results from a study that demonstrated an important benefit for people with primary progressive MS who were treated with diseaes-modifying therapies.
We'll tell you about two scientists who identified a combination of genes that increase a woman's risk of developing MS by 20 times.
And we'll remind you that Burgers to Beat MS is happening this Thursday!
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: How Sleep impacts MS :22
All the ways the Inflation Reduction Act will benefit people living with MS 1:18
Mark Cuban's CostPlus Drug Company now carries the generic for Tecfidera 5:02
Where to find the show notes for every episode of RealTalk MS 9:53
Study results show that DMT use reduces the risk of wheelchair dependence for people with primary progressive MS 12:23
Researchers identify genetic mutations that increase the risk of a woman developing MS by 20 times 14:02
Burgers to Beat MS is happening Thursday! 17:48
Dr. Katie Siengsukon discusses how sleep impacts MS 19:42
Share this episode 35:48
Download the RealTalk MS app for your iOS or Android device 36:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/258
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Become an MS Activist
https://nationalmssociety.org/advocacy
Mark Cuban's CostPlus Drug Company
https://costplusdrugs.com
STUDY: Disease-Modifying Treatments and Time to Loss of Ambulatory Function in Patients with Primary Progressive Multiple Sclerosis
https://jamanetwork.com/journals/jamaneurology/article-abstract/2794292
STUDY: X-Linked Genetic Risk Factors that Promote Autoimmunity and Dampen Remyelination are Associated with Multiple Sclerosis Susceptibility
https://sciencedirect.com/science/article/pii/S2211034822005739
Burgers to Beat MS
https://BurgersToBeatMS.ca
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 259
Guest: Dr. Katie Siengsukon
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
One of the realities of living with MS is that you're often dealing with invisible symptoms. And because symptoms like numbness and tingling, fatigue, depression, vision issues, and pain aren't apparent to others, it can be hard for people around you to understand what MS is all about and, specifically, what you might be struggling with.
Kathy Costello returns to the podcast to discuss how to best manage the invisible symptoms of MS and how you can constructively shut down those conversations that begin with, "But you look so healthy!".
We're also sharing the results of a study that focused on the results of 50 different studies about the effects of autologous hematopoietic stem cell therapy (aHSCT) on people with MS.
We'll tell you about the National MS Society's $19 million dollar investment in 40 new MS research projects.
It's August, so we have to talk about Burgers to Beat MS!
And we'll give you the details about how you can participate in testing a new product that combines technology and music to improve gait problems for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Living with the invisible symptoms of MS :22
A study of 50 studies about the effectiveness of aHSCT in treating MS 1:36
National MS Society invests $19 million in 40 new MS research projects 4:45
It's that time of year again...it's Burgers to Beat MS! 7:03
MedRhythms is asking for your help 8:15
Kathy Costello discusses the invisible symptoms of MS 9:57
Share this episode 32:04
Download the RealTalk MS app for your iOS or Android device 32:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/258
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Can Do MS
https://cando-ms.org
aHSCT in MS
https://www.nationalmssociety.org/Treating-MS/aHSCT#section-0
Autologous Hematopoietic Stem Cell Transplantation in Multiple Sclerosis: A Systemic Review and Meta-Analysis
https://link.springer.com/article/10.1007/s40120-022-00389-x
National MS Society Invests $19 Million to Launch 40 New MS Research Projects to Drive Pathways to Cures
https://nms2cdn.azureedge.net/cmssite/nationalmssociety/media/msnationalfiles/research/new-research-summer-2022.pdf
Burgers to Beat MS
https://BurgersToBeatMS.ca
For More Information about MedRhythms Volunteer Testing Program
Email: appliedresearch@medrhythms.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 258
Guest: Kathy Costello
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Dating can be tricky for anyone. And it doesn't get any easier if you happen to be living with MS. In addition to all the typical dating considerations, you also have to think about things like if, how, and when to disclose your MS.
You want to make sure your dating activities are physically doable. That might mean no long walks on the beach when the temperature is soaring. It might mean no hikes up steep mountain trails. And it might even mean having to postpone your date because your symptoms are acting up.
But like so many other things in life, with a little planning and adaptation, a person living with MS can enjoy a fulfilling dating life.
I'm devoting this entire episode of RealTalk MS to a conversation about dating with MS. Alaya McKinney and Akeem McMichael, two millennials who are each out there in the dating world, join me to share their real-world experiences and strategies for dating while living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Alaya McKinney and Akeem McMichael talk about dating with MS :22
Share this episode 29:04
Download the RealTalk MS app for your iOS or Android device 29:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/257
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 257
Guest: Alaya McKinney and Akeem McMichael
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Imagine that, using your smartphone, you log into a Zoom call from home. You connect with your MS specialist and, while you're chatting, an artificial intelligence-based system is analyzing biometric measurements that will enable your doctor to deliver or fine-tune an MS treatment plan that's been personalized to meet your exact needs.
That's the vision driving NeuraLight, an early-stage company that's, first, aiming to re-write clinical trial design and accelerate new drug development. Joining me to give us an exclusive briefing on NeuraLight's game-changing mission is the co-founder and CEO of NeuraLight, Micha Breakstone.
We're also sharing the results of a pilot study that looked at the impact of intermittent fasting on people living with MS.
We'll tell you about a study that explored how social support affected the quality of sleep among people living with MS during the COVID-19 pandemic.
We've talked a lot about neurofilament light chain in past episodes of RealTalk MS. In this episode, we'll tell you about Labcorp's 2,000 patient service centers that now offer a blood test to measure neurofilament light chain levels. (And we'll tell you why that's a very good thing!)
We'll also share the results of a study that shows how experts may be underestimating the economic burden of living with MS in Canada.
And if you think you might be interested in participating in a study designed to measure the impact of different diets on MS, we'll give you the details about how you can get involved.
We have a lot to talk about! Are you ready for RealTalk MS??!
NeuraLight's vision of the future :22
Intermittent fasting produces immune and metabolic changes in people with MS 1:28
Study shows social support is a predictor of sleep quality in people with MS during the COVID-19 pandemic 4:30
Labcorp announces availability of neurofilament light chain blood test 6:39
CanProCo research shows the economic burden of living with MS in Canada may be underestimated 8:58
Dr. Terry Wahls is recruiting for a study of how 3 different diets impact MS 12:16
Micha Breakstone gives us an exclusive briefing about how NeuraLight may change everything (for the better!) when it comes to MS drug development and MS care 15:28
Share this episode 34:17
Download the RealTalk MS app for your iOS or Android device 34:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/256
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
NeuraLight
https://neuralight.ai
STUDY: Intermittent Calorie Restriction Alters T-Cell Subsets and Metabolic Markers in People with Multiple Sclerosis
https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(22)00305-X/fulltext
STUDY: Social Support Predicts Sleep Quality in People with Multiple Sclerosis During the COVID-19 Pandemic
https://www.msard-journal.com/article/S2211-0348(22)00481-3/fulltext#%20
STUDY: Productivity Loss Among People with Early Multiple Sclerosis: A Canadian Study
https://journals.sagepub.com/doi/10.1177/1352458521069070
Screening Survey for Efficacy of Diet on Quality of Life in Multiple Sclerosis Study
https://recap.icts.uiowa.edu/surveys/?s=JX73EYRJNPF9MHRR
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 256
Guest: Micha Breakstone
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
In last week's episode, we looked at talking with kids about MS. This week, we'll visit the opposite end of the spectrum as Dr. John Corboy discusses some of the things you'll want to think about as you age with MS.
Dr. Corboy is a professor of neurology at the University of Colorado School of Medicine, and the Director of the Rocky Mountain Multiple Sclerosis Center at the University of Colorado. Dr. Corboy is also the Principal Investigator in a recently completed clinical trial that focused on the effects of stopping MS disease-modifying medications in older people living with MS.
We're also sharing the details of a new legislative proposal designed to help manage the skyrocketing cost of prescription drugs.
We'll invite you to be among the first people to review a just-published paper that focuses on how identifying the prodromal phase of MS may lead to disease prevention.
We'll share the evidence from a study that shows how lifestyle choices like choosing not to smoke, engaging in physical activity, and eating a healthy diet can actually impact MS disease progression.
And we'll share some shocking news about how much MS disease-modifying medication is wasted.
We have a lot to talk about! Are you ready for RealTalk MS??!
Aging and MS :22
Revised legislative proposals to better manage the high cost of MS prescription medications 1:28
An important paper focused on how identifying the prodromal phase of MS can lead to disease progression 3:54
Lifestyle factors in MS disability progression 5:53
The shocking reality of DMT waste 9:09
Dr. John Corboy discusses aging and MS and the impact of stopping MS disease-modifying medications in older adults living with MS 13:33
Share this episode 33:17
Download the RealTalk MS app for your iOS or Android device 33:37
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/255
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
RealTalk MS Episode 246: The High Cost of MS Medications with Steffany Stern
https://realtalkms.com/246
National MS Society Applauds Revised Legislative Proposals to Lower the Cost of Prescription Drugs for People Affected by MS
https://nationalmssociety.org/About-the-Society/News/The-National-Multiple-Sclerosis-Society-Applauds-R
National MS Society Advocacy
https://nationalmssociety.org/advocacy
From the Prodromal Stage of Multiple Sclerosis to Disease Prevention
https://www.nature.com/articles/s41582-022-00686-x
STUDY: Lifestyle Factors in Multiple Sclerosis Disability Progression and Silent Brain Damage: A Cross-Sectional Study
https://www.msard-journal.com/article/s2211-0348(22)00522-3/fulltext#%20
STUDY: Hiding in Plain Sight: The Magnitude of Unused Disease Modifying Therapies in Multiple Sclerosis and Strategies for Reducing the Economic Burden of Care
https://pubmed.ncbi.nlm.nih.gov/35661567/
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 255
Guest: Dr. John Corboy
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Whether we adults admit it or not, kids see everything. That includes seeing a parent or other family member who's living with MS. And because kids don't have an understanding of neurological conditions, they use their imaginations to fill in the blanks. That can very quickly take them down a rabbit-hole that's far scarier than the reality of living with MS. So, when do you talk to your kids about MS? And what do you say?
Licensed social worker and behavioral specialist Erin Martin joins me to talk about talking to kids about your MS.
If you're living with MS and you still smoke, we're sharing results of a study that you may want to carefully consider.
We'll also share the results of two different studies that might help inform your COVID-19 strategy if you're on a b-cell depleting disease-modifying therapy.
We'll let you know how you can catch the video replay of an excellent webinar presented by the International Progressive MS Alliance.
We'll share the details about how a group of international experts discovered a method for measuring remyelinated MS lesions (And we'll tell you why that's become important right now)
We'll also share some encouraging results of a study that looked at the impact of estriol and Copaxone on women living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Talking to kids about MS :22
Smoking is shown to affect MS progression 1:29
COVID-19 vaccines, breakthrough infections, and Evusheld 3:44
Catch the video replay of the International Progressive MS Alliance Webinar 8:31
A team of international experts discover a way to measure myelin repair 9:08
Combination of Estriol plus Copaxone is shown to reduce neurofilament light chain levels 11:57
Behavioral specialist Erin Martin discusses talking about MS with your kids 14:27
Share this episode 29:03
Download the RealTalk MS app for your iOS or Android device 29:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/254
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: The Effect of Smoking on Long-Term Grey Matter Atrophy and Clinical Disability in Patients with Relapsing-Remitting Multiple Sclerosis
https://nn.neurology.org/content/9/5/e200008
STUDY: Tixagevimab and Cligavimab (Evusheld) Boost Antibody Levels to SARS-COV2 in Patients with Multiple Sclerosis on B-Cell Depleters
https://sciencedirect.com/science/article/pii/S2211034822004163
VIDEO: Solving the Mystery of Progression: The Key to New Treatments for Progressive MS
https://youtube.com/watch?v=U5sm54HSBpY
STUDY: A New Advanced MRI Biomarker for Remyelinated Lesions in Multiple Sclerosis
https://onlinelibrary.wiley.com/doi/10.1002/ana.26441
STUDY: Decreased Neurofilament Light Chain Levels in Estriol-Treated Multiple Sclerosis
https://onlinelibrary.wiley.com/doi/10.1002/acn3.51622
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 254
Guest: Erin Martin
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Everybody remembers the day -- sometimes, even the moment -- when they were diagnosed with MS. And in that moment, you may not have known very much about living with MS, but you probably felt like everything was about to change.
One of the most common emotional responses to MS is grief. Joining me to talk about the relationship between grief and MS, as well as share some specific steps and strategies that you can take to process and manage grief in a healthy way is clinical psychologist Dr. Rosalind Kalb.
Dr. Kalb has specialized in MS care and education for almost 40 years. She's a past Vice-President of the Professional Resource Center at the National MS Society. And currently, Dr. Kalb is the Senior Programs Consultant for Can Do MS.
We'll also share the details of the experiments conducted by two German scientists that may shed important light on the process of myelin repair.
We'll tell you what a research team learned from the largest MS fatigue study ever conducted in the United Kingdom.
We'll highlight some of the changes to the updated guidelines for diagnosing and treating MS in the U.K.
And we'll share the results of an extension study of Kesimpta presented last week at the annual meeting of the European Academy of Neurology.
We have a lot to talk about! Are you ready for RealTalk MS??!
Grief and MS :22
Scientists may have discovered two proteins that stop myelin repair 1:26
Researchers share results of the largest MS fatigue study in the U.K. 3:39
Updated guidelines for diagnosing and treating MS in the U.K. 6:31
Kesimpta extension study participants show no evidence of disease activity after 4 years 8:57
Dr. Rosalind Kalb discusses grief and MS 11:42
Share this episode 30:03
Download the RealTalk MS app for your iOS or Android device 30:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/253
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
The Extracellular Matrix Proteins Tenascin-C and Tenascin-R Retard Oligodendrocyte Precursor Maturation and Myelin Regeneration in Cuprizone-Induced Long-Term Demyelination Animal Model
https://www.mdpi.com/2073-4409/11/11/1773/htm
Fatigue in Multiple Sclerosis: A UK MS-Register Based Study
https://sciencedirect.com/science/article/pii/S2211034822004655
Updated NICE Guidelines -- Multiple Sclerosis in Adults: Management
https://nice.org.uk/guidance/ng220
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 253
Guest: Dr. Rosalind Kalb
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When I began thinking about launching RealTalk MS, one of the first things I did was listen to other podcasts for the MS community. Five years ago, there weren't nearly as many podcasts focused on MS as there are today, but one of the podcasts I listened to was FUMS. And after listening to that podcast, I remember feeling inspired about moving forward with my plans for launching this podcast.
Joining me to talk about her journey from being diagnosed with MS to launching her podcast and learning how patients get paid is the voice and energy behind the FUMS podcast, Kathy Reagan Young.
We're also talking about a new venture from France, aimed at myelin repair.
We'll share the details of a treatment for urinary incontinence for people living with MS that will soon be available in European Union countries.
And we'll tell you about the first robotic exoskeleton that's received FDA clearance for use by people with MS. (And we'll tell you why that's going to make a real difference for some people living with progressive MS!)
We have a lot to talk about! Are you ready for RealTalk MS??!
250 Episodes -- 1.500,000 Downloads and counting! :22
FIND Therapeutics and SATT Connectus collaborate on myelin repair 2:14
Dysport receives favorable opinion from the EU 3:28
FDA grants clearance for robotic exoskeleton use by people with MS 6:09
Kathy Reagan Young's journey from diagnosis to giving MS the finger and learning how patients get paid 8:45
Share this episode 31:12
Download the RealTalk MS app for your iOS or Android device 31:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/252
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Efficacy and Safety of AbobotulinumtoxinA in Patients with Neurogenic Detrusor Overactivity Incontinence Performing Regular Clean Intermittent Catheterization: Pooled Results of Two Phase 3 Randomized Studies (CONTENT1 and CONTENT2)
https://sciencedirect.com/science/article/pii/S03022838220116803
RealTalk MS #198: Dr. Brian Sandroff Shares the Results of Kessler Foundation's Robotic Exoskeleton-Assisted Exercise Pilot Study
https://realtalkms.com/198
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 252
Guest: Kathy Reagan Young
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Health disparities, systemic inequities, and discrimination often stand in the way of gaining access to MS care for members of the LGBTQ+ community.
As we explore some of the obstacles faced by members of the LGBTQ+ community in accessing healthcare, we'll gain the clinician's perspective in our conversation with MS specialist, Dr. William Conte. We'll hear about the experiences of a queer trans person living with MS when we talk with Payshunz Nagashima. And we'll learn about the National MS Society's efforts to broaden access to MS care for members of underserved communities when we speak with the MS Society's Director of Health Equity Initiatives, Andreina Barnola.
We have a lot to talk about! Are you ready for RealTalk MS??!
June is Pride Month :22
Dr. William Conte discusses obstacles to MS care faced by members of the LGBTQ+ community 1:12
Payshunz Nagashima shares their experience as a queer transgender person living with MS 10:30
Andreina Barnola discusses the role of the National MS Society in improving access to MS care for members of underserved communities 20:20
Share this episode 26:09
Download the RealTalk MS app for your iOS or Android device 26:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/251
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 251
Guests: Dr. William Conte, Payshunz Nagashima, and Andreina Barnola
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
One afternoon during the Consortium of Multiple Sclerosis Centers Annual Meeting, I set up my equipment at the National MS Society's booth in the conference exhibit hall and recorded some conversations with a few old friends and a few new friends of the podcast. In this week's episode, we'll hear a couple of those conversations.
Before I left for the conference, I had a chance to catch up with Dr. Saud Sadiq. So, we'll begin this episode with an update on his mesenchymal stem cell clinical trial and the unprecedented outcome he's seeing.
We'll talk with Dr. Kathy Zackowski and get her impressions of some of the conference presentations that got her attention.
And we'll hear from Marijean Buhse as she recaps what I found to be an important presentation on shared decision-making.
We have a lot to talk about! Are you ready for RealTalk MS??!
We're at the Consortium of Multiple Sclerosis Centers Annual Meeting! :22
Dr. Saud Sadiq Updates Us on His Mesenchymal Stem Cell Clinical Trial 1:43
Dr. Kathy Zackowski Discusses the Conference Presentations That Caught Her Attention 10:44
Marijean Buhse Recaps Her Conference Presentation on Shared-Decision Making 23:27
Share this episode 33:13
Download the RealTalk MS app for your iOS or Android device 33:34
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/250
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
RealTalk MS Episode 215: Stem Cell Therapy for MS with Dr. Jeffrey Cohen
https://realtalkms.com/215
The National MS Society Presents the Black MS Experience Summit
https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Black-MS-Experience
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 250
Guests: Dr. Saud Sadiq, Dr. Kathy Zackowski, Marijean Buhse, PhD, RN, NP-C, MSCN
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
In 2007, Tyler Campbell was a running back at San Diego State, looking forward to a real shot at a career in the NFL. Instead, Tyler's life was turned upside down by an MS diagnosis.
For some people, that would have been the end of the story. For Tyler, it was only the beginning.
In this week's episode, Tyler Campbell talks about his transformational journey from the football field to becoming a motivational and inspirational leader in the MS movement.
We have a lot to talk about! Are you ready for RealTalk MS??!
I met a real difference-maker! :22
My conversation with Tyler Campbell 1:12
Share this episode 26:56
Download the RealTalk MS app for your iOS or Android device 27:16
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/249
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
The National MS Society Presents the Black MS Experience Summit
https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Black-MS-Experience
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 249
Guest: Tyler Campbell
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Starting a family is a big step for anyone. And when you're living with MS and you're on MS medications along with other symptom management medications, planning a family creates a lot of questions about what's safe and what's not.
Dr. Annette Langer-Gould, a clinician-scientist and MS specialist in the Kaiser-Permanente health system, joins me to answer questions about how to safely and successfully navigate conception, pregnancy, and the postpartum period with MS.
We'll also get a briefing from Principal Investigator Dr. Jiwon Oh on the long-term extension study of Tolebrutinib, an investigational MS medication that's part of a whole new category of MS medications.
And we're sharing details of the 2022 Black MS Experience Summit, taking place June 15-16. Find out how and where to register for this free event!
We have a lot to talk about! Are you ready for RealTalk MS??!
I'm heading to the Consortium of MS Centers Annual Meeting :22
Dr. Jiwon Oh discusses the long-term extension study of Tolebrutinib 1:02
The Black MS Experience Summit is happening June 15-16 11:01
Can-Do MS is hosting a webinar on "Bowel and Bladder: How to Find Confidence and Control" 12:03
Dr. Annette Langer-Gould discusses pregnancy and MS 13:01
Share this episode 31:00
Download the RealTalk MS app for your iOS or Android device 31:20
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Just copy this link & paste it into your text or email: https://realtalkms.com/248
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
The National MS Society Presents the Black MS Experience Summit
https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Black-MS-Experience
Can Do MS Webinar Information and Registration
https://cando-ms.org/webinar
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 248
Guests: Dr. Jiwon Oh and Dr. Annette Langer-Gould
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Think about how much faster, easier, cheaper, and less invasive it would be if MS could be diagnosed by a simple blood test.
Scientists have identified biomarkers that can be used to diagnose MS and even predict MS before someone experiences any symptoms. Biomarkers may even be used to predict MS progression before it occurs.
Joining me to discuss how biomarkers may change the way MS is diagnosed and treated is Dr. Tanuja Chitnis, a Professor of Neurology at Harvard Medical School, as well as the Director of the CLIMB Study and the Translational Neuroimmunology Research Center at Brigham and Women's Hospital.
We're also talking about a recent breakthrough in myelin repair.
We're sharing all the details about how you can participate in World MS Day on May 30th.
We'll tell you about a report commissioned by the National Academy of Medicine that takes a close look at the challenges of identifying credible health information in social media.
And if you're an MS caregiver, healthcare professional, or researcher, we'll give you the details of an important survey that you can participate in.
We have a lot to talk about! Are you ready for RealTalk MS??!
Biomarkers can change everything :22
May 30th is World MS Day 1:53
Lab-made molecule is shown to promote myelin repair in preclinical models of MS 3:23
National Academy of Medicine weighs in on the challenges of finding credible sources of health information in social media 5:03
An important survey for MS caregivers, healthcare professionals, and researchers 11:34
Dr. Tanuja Chitnis discusses biomarkers that may fundamentally change how MS is diagnosed and treated 13:38
Share this episode 28:23
Download the RealTalk MS app for your iOS or Android device 28:43
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Just copy this link & paste it into your text or email: https://realtalkms.com/247
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Report: Identifying Credible Sources of Health Information in Social Media: Principles and Attributes
https://nam.edu/identifying-credible-sources-of-health-information-in-social-media-principles-and-attributes
World MS Day
https://worldmsday.org
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 247
Guests: Dr. Tanuja Chitnis
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When my wife was diagnosed with MS in 1997, the annual cost of her MS medication was $9,000. Today, the annual cost of that same medication is $110,000.
We cannot allow the insanity associated with the cost of MS medications to continue.
Joining me to discuss the impact of the outrageously high cost of MS medications -- and what each of us can do about it -- is the National MS Society's Vice-President of Advocacy, Steffany Stern.
We're also talking about a Phase 1 clinical trial for an investigational Epstein-Barr Virus vaccine (and why that matters to everyone living with MS).
We'll tell you about a study that may have identified a biomarker for MS-related fatigue.
We're also sharing the results of a study that identified which stress-reducing activities can help reduce MS-related depression and fatigue.
And we'll tell you about a study that identified the economic benefits of starting MS medications early.
We have a lot to talk about! Are you ready for RealTalk MS??!
The (HIGH!) Cost of MS Medications :22
NIH Announces Phase I Clinical Trial of Investigational EBV Vaccine 4:21
Study identifies a potential biomarker for MS fatigue 6:04
Study identifies stress-reducing activities that lower MS-related depression and fatigue 8:37
Study shows the economic benefits of starting MS medications early 11:25
Steffany Stern discusses the impact of the cost of MS medications 14:16
Share this episode 32:10
Download the RealTalk MS app for your iOS or Android device 32:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/246
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society: You Can Help Bring MS Medications Into Reach
https://nationalmssociety.org/Treating-MS/Medications/Make-MS-Medications-Accessible/Take-Action
RealTalk MS Ep.229: Evidence Shows MS Is Triggered by the Epstein-Barr Virus with Dr. Kassandra Munger and Dr. AJ Joshi
https://realtalkms.com/229
RealTalk MS Episode 231: Evidence Shows EBV Triggers MS: Understanding this Breakthrough Research with Dr. Bruce Bebo
https://realtalkms.com/231
Cerebrospinal Fluid Amyloid Precursor Protein as a Potential Biomarker for Fatigue in Multiple Sclerosis: A Pilot Study
https://sciencedirect.com/science/article/pii/S2211034822003583
SURVEY: Undertaking Specific Stress-Reducing Activities are Associated with Reduced Fatigue and Depression, And Increased Mastery, in People with Multiple Sclerosis
https://sciencedirect.com/science/article/pii/S2211034822003169
Early vs Late Treatment Initiation in Multiple Sclerosis and Its Impact on Cost of Illness: A Register-Based Prospective Cohort Study in Sweden
https://pubmed.ncbi.nlm.nih.gov/35496759
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 246
Guests: Steffany Stern
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
For some, the journey to their MS diagnosis is relatively quick and straightforward. For others, it can be lengthy and convoluted, sometimes taking years.
Joining me to talk about some of the twists and turns that can pop up on the road to being diagnosed with MS is Dr. Michael Robers, a neurologist in the Multiple Sclerosis Program and an assistant professor in the Department of Neurology at Barrow Neurological Institute.
We're also talking about a study that measured MS prevalence among Black, White, Hispanic, and Asian people.
We'll share results of a survey that looked at cannabis use among Canadians living with MS.
We're also sharing results of a survey that looked at where Americans living with MS get their information about cannabis.
If you're an MS caregiver, healthcare professional, or researcher, we'll give you the details about an important survey that you can participate in.
And we're even taking a moment for a special thank you!
We have a lot to talk about! Are you ready for RealTalk MS??!
A quick look at the numbers and a heartfelt thank you! :22
A date that each person remembers 2:59
Study looks at MS prevalence among different racial and ethnic groups 4:36
Survey results show cannabis use among Canadians with MS 7:41
Where do you get your information? 10:07
Survey results show where Americans with MS get their information and guidance about cannabis 11:20
An important survey for MS caregivers, healthcare professionals, and researchers 14:37
Dr. Michael Robers discusses the journey to an MS diagnosis 17:03
Share this episode 31:20
Download the RealTalk MS app for your iOS or Android device 31:41
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/245
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Racial and Ethnic Disparities in Multiple Sclerosis Prevalence
https://n.neurology.org/content/98/18/e1818
SURVEY: Medical Cannabis Used in Canadians with Multiple Sclerosis
https://www.msard-journal.com/article/S2211-0348(22)00153-5/fulltext
SURVEY: Sources of Cannabis Information and Medical Guidance for Neurologic Use: NARCOMS Survey of People Living with Multiple Sclerosis
https://cp.neurology.org/content/12/2/102
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 245
Guests: Dr. Michael Robers
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Planning for your financial future is good advice for everyone. But when you're living with MS, financial planning is an important part of the game plan for living your best life.
Joining me to talk about the things you'll want to keep in mind as you develop your personal financial roadmap is Dick Bell, a professional financial advisor who has worked with more than 600 clients who are living with MS.
We're also talking about how Russia's invasion of Ukraine is impacting MS clinical research.
We'll tell you about a study that's focusing on a novel approach to promoting remyelination.
We're sharing the results of a study that identified a biomarker that may predict future MS disease progression.
And we'll share survey results that show all the ways that MS can impact life.
We have a lot to talk about! Are you ready for RealTalk MS??!
How Russia's invasion of Ukraine is impacting MS clinical research 1:35
A study in the U.K. will test a novel approach to promoting remyelination: 3:27
Study identifies a biomarker that may predict future MS disease activity 7:26
FDA awards Breakthrough Device Designation to a technology that may speed MS diagnosis and predict future disease activity 9:56
Survey results show all the ways MS impacts your life 11:20
Financial advisor Dick Bell discusses your long-term financial strategy for living with MS 15:39
Share this episode 28:05
Download the RealTalk MS app for your iOS or Android device 28:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/244
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
CCMR Two: A Phase IIa, Randomised, Double-Blind, Placebo-Controlled Trial of the Ability of Metformin and Clemastine to Promote Remyelination in People with Relapsing-Remitting Multiple Sclerosis Already on Disease-Modifying Therapy
https://clinicaltrials.gov/ct2/show/NCT05131828
STUDY: Prognostic Value of Serum Filament Light Chain for Disease Activity and Worsening in Patients with Relapsing Multiple Sclerosis: Results from the Phase 3 ASCLEPIOS I and II Trials
https://frontiersin.org/articles/10.3389/fimmu.2022.852563/full
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 244
Guests: Dick Bell
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Living with MS is expensive. And if you're curious about how expensive living with MS is, why it's so expensive, and what can be done about it, then you're going to be interested in the results of a study that was commissioned by the National MS Society.
Joining me to talk about what this study revealed and what it means to individuals and families affected by MS are Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society, and the MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente.
We're also talking about a study that reveals a connection between MS severity and geography.
Have you ever wondered why some people develop severe MS while others don't? We're sharing the details of a study that's hoping to answer that question.
And if you're a caregiver for someone who's living with MS, or you're a healthcare provider who interacts with MS caregivers, or you're a researcher interested in MS caregivers, we'll explain why iConquer MS would like just a few minutes of your time.
We have a lot to talk about! Are you ready for RealTalk MS??!
Measuring the financial impact of MS :22
A study shows MS severity correlates to geographic latitude 1:47
A new study will try to understand why some people develop severe MS while others don't 4:13
iConquer MS is expanding to include MS caregivers but first they need your help 7:26
Dr. Bruce Bebo and Bari Talente break down the results of a study that focused on the cost of living with MS 9:56
Share this episode 29:04
Download the RealTalk MS app for your iOS or Android device 29:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/243
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Economic Burden of Multiple Sclerosis in the United States: Estimate of Direct and Indirect Costs
https://n.neurology.org/content/early/2022/04/13/WNL.0000000000200150
STUDY: Association of Latitude and Exposure to Ultraviolet B Radiation With Severity of Multiple Sclerosis: An International Registry Study
https://n.neurology.org/content/early/2022/04/11/WNL.0000000000200545
University at Buffalo Multiple Sclerosis Research Challenge: Contribute to the CASA-MS Study
https://crowdfunding.buffalo.edu/project/29733
iConquer MS Survey for MS Caregivers
https://survey.alchemer.com/s3/6823942/Caregiver-Survey-MS-Caregivers
iConquer MS Survey for Researchers and Healthcare Providers
https://survey.alchemer.com/s3/6823815/Caregiver-research-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 243
Guests: Dr. Bruce Bebo and Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Mask mandates have mostly ended, and bars, restaurants, public buildings, and other businesses no longer require proof of vaccination. It looks like the COVID-19 pandemic is over. Except for the fact that we're seeing cases of the latest COVID subvariant continue to rise in cities across the country and around the world. So, how do we navigate this post-pandemic world? And if you happen to be immunocompromised, how do you stay safe? Joining me as she has throughout the pandemic, with an update including the steps you can take to stay safe as the world re-opens is Dr. Nancy Sicotte. Dr. Sicotte is a professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles. Dr. Sicotte also Chairs the National MS Society’s National Medical Advisory Committee and she leads the MS Society's COVID-19 Advisory Group. We're also talking about a workshop that brought together a group of global experts to weigh in on autologous hematopoietic stem cell transplantation (aHSCT) as a viable treatment for MS.
We're sharing the details about an upcoming clinical trial that will test a myelin-restoring treatment for people with relapsing-remitting MS.
Evidence from multiple studies shows that members of the Black and Hispanic communities who live with MS can experience a more severe disease course and a higher disability burden. We'll share the details of a presentation from the Academy of American Neurology annual meeting that sheds new light on what may be driving these disparities.
And we'll tell you how you can register to participate in the National African-Americans with MS Registry.
We have a lot to talk about! Are you ready for RealTalk MS??!
Welcome to the Next Normal! :22
ECTRIMS hosts an Autologous Hematopoietic Stem Cell Transplantation (aHSCT) workshop 1:45
FDA Approves clinical trial for a myelin-restoring treatment 6:04
New data may explain racial and ethnic disparities in MS disease severity and treatment 7:45
The National African Americans with MS Registry 10:13
Dr. Nancy Sicotte explains what people with MS need to know to stay safe as they re-enter a post-pandemic world 11:52
Share this episode 32:31
Download the RealTalk MS app for your iOS or Android device 32:51
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/242
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
ECTRIMS Focused Workshop: Autologous Hematopoietic Stem Cell Transplantation For Treatment of MS and Related Diseases
https://ectrims.eu/ongoing-educational-programmes/focused-workshops
National MS Society Recommendations for aHSCT-Bone Marrow Transplant for MS
https://nationalmssociety.org/About-the-Society/News/National-MS-Society-Releases-Recommendations-for-a
National African Americans with MS Registry
https://www.naamsr.org
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
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https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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RealTalk MS Episode 242
Guests: Dr. Nancy Sicotte
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
I spent last week attending the American Academy of Neurology (AAN) Annual Meeting and in this week's episode of RealTalk MS, I'm sharing an overview of what I saw and what I heard. Each year at the AAN meeting, the American Academy of Neurology and the National MS Society award the John Dystel Prize for MS Research. Joining me on today's podcast is this year's recipient of the Dystel Prize, Professor Xavier Montalban.
We're also talking about how the COVID-19 pandemic has affected MS research and clinical care.
We're sharing encouraging news about two potential disease-modifying therapies.
And we'll share some of the over-arching themes that kept popping up in a number of different meetings, presentations, and conversations during the AAN annual meeting.
We have a lot to talk about! Are you ready for RealTalk MS??!
The impact of the pandemic on MS research and clinical care :53
Results of Phase 2 extension study show Evobrutinib effective in reducing relapse rates in relapsing forms of MS 4:53
Results of Ublituximab Phase 3 post-hoc analyses announced 7:16
Dr. Stephen Hauser receives the Scientific Breakthrough Award 9:25
The importance of making complex science easy to understand for people affected by MS 10:29
The importance of increasing clinical trial participation among members of minority communities 12:48
The importance of caring for the caregiver 14:04
John Dystel Prize for MS Research awarded to Prof. Xavier Montalban 15:40
My conversation with John Dystel Prize recipient Professor Xavier Montalban 16:25
Share this episode 24:51
Have you downloaded the RealTalk MS app? 25:12
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Just copy this link & paste it into your text or email: https://realtalkms.com/241
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 241
Guests: Professor Xavier Montalban
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Research has shown that hypnosis is an effective treatment for managing chronic pain, including pain associated with MS.
My guest, Dr. Mark Jensen, is a Professor and Vice-Chair of the Department of Rehabilitation Medicine at the University of Washington. Dr. Jensen has devoted his career to developing effective treatments for pain and is an expert on hypnotic interventions.
We're also talking about a research team that may have learned how to successfully penetrate the blood-brain barrier (and why that could be great news for people living with MS!).
We'll share the results of a 10-year study in France that showed very positive outcomes for people living with highly active relapsing-remitting MS.
We'll tell you about 66 research projects that have just been funded by the MS Society of Canada.
And we'll share results from a survey that identify pandemic-specific depression and anxiety among people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Researchers may have found a way through the blood- brain barrier 1:17
10-year study reveals surprising results 4:19
MS Society of Canada announces funding for 66 research projects 8:07
Researchers identify pandemic-related depression among people living with MS 9:11
Dr. Mark Jensen discusses treating MS-related chronic pain with hypnosis 12:43
Share this episode 30:58
Have you downloaded the RealTalk MS app? 31:19
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/240
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Endothelial Unc5B Controls Blood-Brain Barrier Integrity
https://www.nature.com/articles/s41467-022-28785-9
STUDY: Ten-Year Follow-Up After Mitoxantrone Induction For Early Highly Active Relapsing-Remitting Multiple Sclerosis: An Observational Study of 100 Consecutive Patients
https://sciencedirect.com/science/articles/abs/pii/5003578722000431
MS Society of Canada Research Funding Announcement
https://mssociety.ca/information-for-researchers/funding-announcements
National MS Society MS Navigator Contact Info
Phone: (800) 344-4867
Email: contactusnmss@nmss.org
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 240
Guests: Dr. Mark Jensen
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
A decade ago, the International Progressive MS Alliance didn't exist. Today, it can be credited with changing the global conversation about progressive MS research, elevating the progressive MS research agenda and moving the work forward. A few weeks ago, the Alliance announced the details of an ambitious strategic plan that will guide their work over the next 3 years. Joining me to talk about the new goals that were set by the Alliance, and what that means for people affected by progressive MS, is the Chair of the Alliance's Scientific Steering Committee, Dr. Robert Fox.
The MS International Federation conducted a survey and we're wondering whether the responses have raised a larger question?
We're also talking about a study that showed how an online mindfulness program significantly improved depression for people living with MS.
We're sharing study results that show your nose knows when your DMT is working well for you.
We'll also share the details about an exciting undertaking at the University of Colorado that may lead to treating people so that they completely avoid the symptoms of MS.
And we'll tell you about a small trial that demonstrated the effectiveness of an experimental stem cell therapy as a potential treatment for progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
International Progressive MS Alliance unveils a new 3-year strategic plan :22
Survey results raise a larger question -- How do we share MS research news with people affected by MS??? 1:04
Online mindfulness provides significant improvement for managing depression among people with MS 16:14
Using your nose to determine the efficacy of your disease-modifying therapy 8:33
NeuroGenesis cell therapy shows promise as a potential treatment for progressive MS 14:14
Dr. Robert Fox discusses what's next for the International Progressive MS Alliance 17:28
Share this episode 28:07
Have you downloaded the RealTalk MS app? 28:27
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/239
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
International Progressive MS Alliance
https://progressivemsalliance.org
STUDY: A Randomized Controlled Trial of a Web-Based Mindfulness Programme for People With MS With and Without a History of Recurrent Depression
https://journals.sagepub.com/doi/10.1177/13524585211068002
STUDY: Olfactory Threshold Predicts Treatment Response in Relapsing Multiple Sclerosis
https://journals.sagepub.com/doi/10.1177/1354285221079744
STUDY: Effects of Mesenchymal Stem Cell Transplantation on Cerebrospinal Fluid Biomarkers in Progressive MS
https://academic.oup.com/stcltm/article/11/1/55/6528889
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 239
Guests: Dr. Robert Fox
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
The Pathways to Cures initiative is focused on stopping MS progression, restoring lost function, and ending MS forever. This bold initiative has already been endorsed by more than 20 MS research and patient organizations around the world. And now, the publication of the Pathways to Cures Research Roadmap has brought us to a pivotal moment in the history of MS research.
Joining me in this episode of RealTalk MS are two very special guests, Dr. Carol Whitacre and Professor Alan Thompson. We're taking a close look at what Pathways to Cures is all about, where we are on the Pathways to Cures Research Roadmap, and what this initiative means for people affected by MS.
Dr. Whitacre is the former Senior Vice-President of Research at The Ohio State University, and the current Chair of the National MS Society's Scientific Advisory Committee.
Professor Thompson is a clinician scientist who has been the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
The Pathways to Cures Research Roadmap :22
Dr. Carol Whitacre discusses the significance of the Pathways to Cures initiative 3:34
Prof. Alan Thompson reviews the status of MS research to stop progression, restore lost function, and end MS, then looks ahead to next steps in the Pathways to Cures research roadmap 16:14
Share this episode 33:52
Have you downloaded the RealTalk MS app? 34:12
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Just copy this link & paste it into your text or email: https://realtalkms.com/238
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
RealTalk MS Episode 125: The Pathways to Cures Think Tank
https://realtalkms.com/125
Pathways to Cures
https://pathwaystocures.org
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 238
Guests: Dr. Carol Whitacre and Prof. Alan Thompson
Tags: MS, MSAwareness MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
It's MS Awareness Week and my guest is Marti Hines. Marti is a successful event producer, entrepreneur, film producer, and director. She was diagnosed with MS in 2018, and Marti has been very transparent in sharing the highs and lows of her MS journey on her social channels. Like so many people living with MS, Marti has an amazing energy and a seemingly endless supply of resilience. You're going to enjoy meeting her.
We're also talking about why increasing diversity in clinical trials is so vital. And we're highlighting the Consensus Statement on Health Equity in Clinical Trials and Real-World Evidence Data Collection that was released by the National MS Society's Corporate Healthcare Roundtable.
You'll learn about the Cost Plus Drug Company, billionaire Mark Cuban's effort to disrupt the prescription drug market by offering generic drugs that truly are affordable.
And we'll share the results of a study that shows that a keto diet may be beneficial for people living with relapsing MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
It's MS Awareness Week! :22
MS Society Corporate Healthcare Roundtable issues a consensus statement on health equity in clinical trials 1:03
Mark Cuban Cost Plus Drug Company is compassionate capitalism in action 5:59 Keto diet shows benefits for people with relapsing MS 11:18
Marti Hines talks about why sharing her MS journey is important 14:51
Share this episode 26:08
Have a minute? Leave a rating and review for RealTalk MS! 26:28
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/237
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society MS Awareness Week
https://nationalmssociety.org/msawareness
National MS Society Corporate Healthcare Roundtable Consensus Statement on Health Equity in Clinical Trials and Real-World Evidence Data Collection
https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Documents/Corporate-Healthcare-Roundtable_Consensus-Statement-on-Health-Equity-in-Clinical-Trials-and-Data-Collection-(2).pdf
National MS Society Public Policy Conference Replay
https://nationalmssociety.org/ppc
Mark Cuban Cost Plus Drug Company
https://costplusdrugs.com
STUDY: Ketogenic Diet as a Strategy for Improved Wellness and Reduced Disability in Relapsing Multiple Sclerosis
https://index.mirasmart.com/aan2022/PDFfiles/AAN2022-000622.html
Join the RealTalk MS Facebook Group
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https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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RealTalk MS Episode 237
Guests: Marti Hines
Tags: MS, MSAwareness MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
If you're living with MS, there's a good chance that, at some point, you're going to deal with depression, cognitive issues, or both of these common MS symptoms. We're taking a deep dive into how these symptoms can impact your everyday life at home and at work with the author of Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis, Dr. Anthony Feinstein.
We're also highlighting some of the MS research that was presented two weeks ago at the ACTRIMS Forum, the annual meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis.
You'll hear how artificial intelligence is being used to predict how someone will respond to different disease-modifying therapies.
You'll learn about the efficacy of stem cell therapy in treating aggressive MS.
And we'll share the results of a research project designed to calculate the economic burden of MS in the United States.
We have a lot to talk about! Are you ready for RealTalk MS??!
Thanks for participating in the Public Policy Conference! :22
Why we talk about depression and cognitive issues on this podcast :47
AI helps predict treatment response in primary progressive MS 3:02
Stem cell therapy shows benefits in treating aggressive MS 6:28
Study measures the economic burden of MS 8:32
Dr. Anthony Feinstein discusses how mind, mood, and memory impact MS 12:31
Share this episode 28:34
Download the RealTalk MS app for your iOS or Android device 28:56
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/236
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
"Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis" on Amazon.com
https://www.amazon.com/Mind-Mood-Memory-Neurobehavioral-Consequences-ebook-dp-B099NXZMMS/dp/B099NXZMMS/ref=mt_other
STUDY: A Comprehensive Assessment of the Total Economic Burden of Multiple Sclerosis in the United States
https://ectrims2021.abstractserver.com/program/#/details/presentations/557
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 236
Guests: Dr. Anthony Feinstein
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
I've always believed that the things people affected by MS want most -- things like access to quality healthcare, affordable prescription medications, and funding for MS research -- are all functions of public policy. The people who decide whether we get those things are our elected officials at both the state and federal level. That's why advocacy is a priority.
The National MS Society's Public Policy Conference is taking place on March 7th. Joining me with a preview of what we can expect to see and hear at this year's conference, as well as how you can register to participate, is the MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente.
Last week, the America's Committee for Treatment and Research in Multiple Sclerosis convened the 2022 ACTRIMS Forum, their annual research conference.
One of the highlights of the ACTRIMS Forum is the presentation of the Barancik Prize for Innovation in MS Research. This year's recipient of the Baranick Prize is Dr. Amit Bar-Or, who was recognized for his pioneering work in uncovering how the immune system drives MS and his cutting-edge research focusing on precision medicine to achieve long-term remission and, ultimately, prevent MS progression.
Dr. Bar-Or also joins me on this episode of the podcast to talk about his innovative work aimed at improving outcomes for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Why talking about MS advocacy is so important :22
Greetings from the 2022 ACTRIMS Forum 1:47
My conversation with Dr. Amit Bar-Or 3:54
We're just days away from the PPC 12:43
Bari Talente discusses the value of MS advocacy and the legislative issues that we'll be talking about at the Public Policy Conference 13:19
Share this episode 27:25
Download the RealTalk MS app for your iOS or Android device 27:49
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/235
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Register for the MS Society's Public Policy Conference
Text "PPC" to 52886
or visit https://nmss.6connex.com/event/PPC/login
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 235
Guests: Bari Talente and Dr. Amit Bar-Or
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, ACTRIMS2022, RealTalkMS
Privacy Policy
Many of our local, state, and national leaders seem to be declaring that the pandemic has ended and it's back to business as usual. But if you're living with MS, how comfortable are you with the idea of being out in a world where everyone isn't fully vaccinated, and mask mandates have been cancelled?
Dr. Meghan Beier and Emily Reilly join me to discuss how to manage your fear and anxiety, build resilience, and deal with the emotional impact of living life in a world where COVID-19 is considered an endemic virus.
Dr. Beier is an Assistant Professor of Physical Medicine and Rehabilitation and Johns Hopkins University School of Medicine and a psychologist with specialized training in health psychology, neuropsychology, and multiple sclerosis.
Emily Reilly is a certified physical trainer and a National MS Society staff member on the Advocacy and Healthcare Access Team. Emily lives with MS, and we'll talk with Emily about how her life has been impacted by the pandemic and how she's found ways to cope with some challenging but all too familiar situations.
We'll also share details of the new 3-year strategic plan unveiled by the International Progressive MS Alliance.
We'll tell you about new investments in MS research in the U.K.
You'll hear about how iConquer MS is expanding its outreach to include kids and teens living with MS and their parents.
And we'll share our plans for attending the first MS research conference in person as the ACTRIMS Forum 2022 gets underway this week.
We have a lot to talk about! Are you ready for RealTalk MS??!
The ACTRIMS Forum 2022 begins this week 2:33
International Progressive MS Alliance Unveils a 3-Year Strategic Plan 5:38
iConquer MS expands to include pediatric MS 8:25
About our show notes 9:47
U.K. MS Society invests $1.5 million in new research 11:55
Dr. Meghan Beier and Emily Reilly discuss dealing with the emotional impact of the pandemic 14:13
Share this episode 31:12
Download the RealTalk MS app for your iOS or Android device 31:33
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/234
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Managing MS and Comorbidities with Dr. Ruth Ann Marrie
https://realtalkms.com/232
International Progressive MS Alliance
https://progressivemsalliance.org
iConquer MS Survey for Kids and Teens Living with MS
https://survey.alchemer.com/s3/6663544/Pediatric-Survey-Kids-Teens
iConquer MS Survey for Parents of Kids or Teens Living with MS
https://survey.alchemer.com/s3/6665289/Pediatric-Survey-Parents-Guardians
iConquer MS Survey for Researchers and Healthcare Providers Working with Kids or Teens Living with MShttps://survey.alchemer.com/s3/6677381/Pediatric-MS-survey-HCPs-and-researchers
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 234
Guests: Dr. Meghan Beier and Emily Reilly
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
With hospital rates starting to decline and mask mandates being lifted in several states there seems to be a general sense that we're seeing COVID-19 becoming an endemic virus. And we have to wonder what that means for people living with MS.
Dr. Nancy Sicotte joins me to talk about the preventative treatments for COVID-19 that are available today for people who are living with MS, the importance of receiving 4 doses of the COVID-19 mRNA vaccines if you're living with MS, and some of the things we should be thinking about as we begin this transition from pandemic to endemic.
Dr. Sicotte is a professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles. Dr. Sicotte also Chairs the MS Society’s National Medical Advisory Committee and leads its COVID-19 Advisory Group.
Evidence shows that MS impacts Black people differently. Evidence also shows that Black people face additional challenges and burdens as they attempt to access the healthcare system. We're also talking with Dr. Jacqueline Rosenthal about the unique challenges of MS in the Black community.
We have a lot to talk about! Are you ready for RealTalk MS??!
Dr. Jacqueline Rosenthal discusses how MS impacts Black people differently 1:38
COVID-19 from pandemic to endemic, Dr. Nancy Sicotte looks at what's ahead for people living with MS 12:53
Share this episode 34:23
Download the RealTalk MS app for your iOS or Android device 34:43
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Just copy this link & paste it into your text or email: https://realtalkms.com/233
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 233
Guests: Dr. Jacqueline Rosenthal and Dr. Nancy Sicotte
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Research shows that about 50% of the people living with MS will develop another chronic health condition, or comorbidity, in their lifetime. Whether it's high blood pressure, diabetes, or something else, living with comorbid conditions adds extra challenges to living with MS.
Joining me to discuss how comorbidities affect people living with MS and what you can do to avoid developing some of those comorbidities is one of the leading experts on the subject, Dr. Ruth Ann Marrie.
We're also talking about why a Phase 2 clinical trial for a prospective MS disease-modifying therapy got a do-over.
We'll share some very encouraging news about how the enrollment for a new study turned out.
We'll also share results from a study in the U.K. that remind us why everyone living with MS needs to be vaccinated and boosted.
We'll give you the registration info for this year's series of First Descents (no cost!) outdoor adventures for young adults living with MS.
And we'll tell you how to register for the National MS Society's virtual 2022 Public Policy Conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
GeNeuro completes Phase 2 clinical trial for Temelimab -- again! 1:29
The CONNECT study connects with all the right participants 3:56
U.K. study results provide one more reason for everyone with MS to be vaccinated 5:57
Registration is now open for First Descents outdoor adventures for young adults living with MS 7:56
MS Society opens registration for this year's virtual Public Policy Conference 9:32
Dr. Ruth Ann Marrie discusses comorbidities and MS 11:56
Share this episode 28:10
Download the RealTalk MS app for your iOS or Android device 28:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/232
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
National MS Society Public Policy Conference Registration
https://nmss.6connex.com/event/PPC/login
STUDY: Recovery from COVID-19 in Multiple Sclerosis: A Prospective and Longitudinal Cohort Study of the United Kingdom Multiple Sclerosis Register
https://nn.neurology.org/content/9/1/e1118
First Descents Program Information
https://firstdescents.org/programs/ms-programs/
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 232
Guests: Dr. Ruth Ann Marrie
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Now that Harvard researchers have presented compelling evidence that MS is triggered by the Epstein-Barr Virus (EBV), what does it mean in terms of ending MS in the world? What does it mean for people already living with MS? And how will this announcement impact MS research?
Joining me to unpack the details and implications of this research breakthrough is the Executive Vice-President of Research for the National MS Society, Dr. Bruce Bebo.
We're also talking about new research from Stanford University that shows how EBV triggers MS.
We'll share the results of a study that shows cognitive dysfunction can increase the risk of death for people living with MS.
We'll give you the details of the $600,000 grant that was awarded to develop a behavioral therapy intervention designed to improve the quality of life for people living with MS.
And if you'd like to be able to say, "I helped develop a cure for MS," we'll tell you how.
We have a lot to talk about! Are you ready for RealTalk MS??!
A Stanford research team discovers how EBV triggers MS 1:18
A biotech company announces they will develop a therapy to kill EBV-inifected cells in people living with MS 4:03
Study shows cognitive dysfunction increases risk of death for people living with MS 5:34
$600,000 awarded to develop a behavioral therapy intervention that will improve quality of life for people living with MS 8:44
Now is the perfect time for you to get involved with iConquer MS 10:58
Dr. Bruce Bebo discusses the implications and next steps following the presentation of evidence showing EBV triggers MS 13:04
Share this episode 28:35
Download the RealTalk MS app for your iOS or Android device 28:56
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/231
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
STUDY: Clonally Expanded B Cells in Multiple Sclerosis Bind EBV EBNA1 and GlialCAM
https://nature.com/articles/s41586-022-04432-7
STUDY: Cognitive Dysfunction and Mortality in Multiple Sclerosis: Long-Term Retrospective Review
https://journals.sagepub.com/doi/10.1177/13524585211066598
iConquer MS
https://iconquerms.org
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 231
Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Fatigue is one of the most common symptoms of MS. It just gets in the way of fully engaging in life, making fatigue one of the most bothersome symptoms of MS. And because MS fatigue is one of the main causes of early withdrawal from the workforce, fatigue is an MS symptom that can impose a hefty financial penalty on a household.
Joining me to talk about managing and even reducing MS fatigue is Dr. Elizabeth Gromisch, a neuropsychologist at the Mandell Center for Multiple Sclerosis in Hartford, Connecticut.
We'll also share the results of a UCSF study that show how artificial intelligence may be able to predict MS in an individual years before they experience any typical MS symptoms.
We'll tell you about two different experimental treatments for progressive MS that are showing some early promise.
We'll give you the details of how you can join a virtual support group with a focus on using positive psychology for people living with MS.
And we'll give you a reminder that MS Got Talent is being live-streamed this Saturday....and Jon's performing magic!
We have a lot to talk about! Are you ready for RealTalk MS??!
Did you catch last week's episode about EBV & MS? :22
Wait....Jon does magic???! 2:08
Study shows AI may predict MS years before it can be diagnosed 3:43
Study shows Hydroxychloroquine slows disability progression in primary progressive MS 7:28
Second patient receives Foralumab as treatment for secondary progressive MS 9:13
How you can join a virtual support group that focuses on using positive psychology for people living with MS 11:08
Dr. Elizabeth Gromisch discusses strategies for managing and even reducing MS fatigue 13:04
Share this episode 27:42
MS Got Talent is live streaming this Saturday 28:03
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/230
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
STUDY: Embedding Electronic Health Records Onto a Knowledge Network Recognizes Prodromal Features of Multiple Sclerosis and Predicts Diagnosis
https://academic.oup.com/jamia/advance-article/doi/10.1093/jamia/ocab270/6463510#323650259
STUDY: Hydroxychloroquine for Primary Progressive MS
https://onlinelibrary.wiley.com/doi/10.1002/ana.26239
Positive Psychology Virtual MS Support Group Study Contact Info
Email: tanya.barcinas@duke.edu
Phone: (919) 638-0889
MS Got Talent LIVE on Jan. 29th at 7PM Eastern/4PM Pacifichttps://mssociety.donordrive.com/participant/msgottalent
or https://twitch.tv/mssociety
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 230
Guests: Dr. Elizabeth Gromisch
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century.
In this special episode of RealTalk MS, we're talking with Pieter van Galen and Amanda Montague about that sometimes-challenging conversation with your healthcare provider about MS progression.
We're also highlighting My MS Roadmap, a free tool designed to make conversations with your healthcare provider easier by offering clear and easy to understand definitions of the complex language used to describe multiple sclerosis.
Amanda Montague is the Chief Mission Officer for the Multiple Sclerosis Association of America and Pieter van Galen is a freelance trainer and consultant based in Belgium. Pieter has been living with MS since being diagnosed in 2006.
Both Amanda and Pieter are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
Last week, a research team at the Harvard T.H. Chan School of Public Health presented compelling evidence that the Epstein-Barr Virus (EBV) triggers multiple sclerosis. So, we're taking a deep dive into the role of EBV and MS.
We'll review the breakthrough results of this research and we'll re-share our conversation with one of the researchers in this game-changing study.
We'll review the status of an experimental cell therapy that's designed to remove the EBV virus from infected b-cells in people with progressive MS.
And we'll update you on a clinical trial that's underway to test an EBV vaccine.
We have a lot to talk about! Are you ready for RealTalk MS??!
Researchers at Harvard present compelling evidence that Epstein-Barr Virus (EBV) triggers MS :22
Dr. Kassandra Munger discusses EBV and MS 4:41
What else do we still need to know? 13:28
ATA-188, EBV, and MS 14:06
Dr. AJ Joshi discusses what scientists are learning from the ATA-188 clinical trial 14:49
What about an EBV vaccine? 27:21
What??? Magic??? 28:33
Share this episode 30:23
Be sure to catch MS Got Talent 30:43
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/229
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
STUDY: Longitudinal Analysis Reveals High Prevalence of Epstein-Barr Virus Associated with Multiple Sclerosis
https://science.org/doi/10.1126/science.abj8222
MS Got Talent LIVE on Jan. 29th at 7PM Eastern/4PM Pacifichttps://mssociety.donordrive.participant/msgottalent
or https://twitch.tv/mssociety
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 229
Guests: Dr. Kassandra Munger,
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, EBV, EpsteinBarr, RealTalkMS
Privacy Policy
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century.
Cognitive impairment affects more than 50% of the people living with MS. In this special episode of RealTalk MS, we're talking with Dr. Sarah Morrow and Paola Kruger about how people living with MS can work together with their healthcare providers to develop a constructive dialogue about cognition and MS.
Dr. Sarah Morrow is an Associate Professor of Neurology in the Department of Clinical Neurological Sciences at Western University. Dr. Morrow is also the founder of the first MS Cognitive Clinic in London Ontario, and the director of the London Ontario MS Clinic in Canada.
Paola Kruger is a patient advocate who was diagnosed with MS in 2010. Since her diagnosis, Paola has worked with the Multiple Sclerosis Centre in Rome, focusing on projects related to patient engagement while also developing new clinician/patient approaches to managing MS.
Both Dr. Morrow and Paola are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
You're invited to take the MS in the 21st Century survey on the impact of cognitive symptoms on daily life and employment here.
For some people, getting a headache means experiencing mild discomfort. For others, it can mean debilitating pain, compromised vision, and other serious effects. You don't have to be living with MS to experience a headache. But research has shown that people living with MS are more likely to experience headaches than people who don't have MS. And there's some evidence to suggest that headaches may be one of the earliest symptoms of MS.
Meagan Adamson is a nurse practitioner who specializes in treating headache and multiple sclerosis. She's joining me this week to share tips and strategies for treating and even avoiding your next headache.
We'll also tell you about 13 research projects that were just funded by the National MS Society. All these projects are focused on detecting MS before obvious symptoms appear. And we'll explain how these projects advance the MS Society's Pathways to Cures initiative.
The phase 3 clinical trial for Masitinb has just received approval from the French Health Authority. We'll give you the details and explain why this is very good news for people living with progressive MS.
We'll share an article written by two leading experts who believe that your neurologist should be prescribing exercise and connecting you to the exercise resources you'll need.
We'll tell you about a study that showed that a combination of cognitive-behavioral therapy and cognitive-targeted exercise improved MS-related fatigue in just 4 weeks.
And if you're living with MS and experiencing depression or anxiety, we'll tell you how you can participate in a study that can help.
We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society invests almost $7 million funding 13 new research projects 1:38
Phase 3 clinical trial for Masitinib receives approval 4:47
Is your neurologist prescribing exercise? 7:43
Study shows CBT plus Cognitive-Targeted Exercise improve MS fatigue 12:33
Experiencing depression? Participate in a study that can help 16:02
Nurse Practitioner Meagan Adamson shares strategies for treating and avoiding your next headache 19:14
Share this episode 28:03
Have you downloaded the free RealTalk MS app yet??? 28:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/228
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
National MS Society Commits Nearly $7 Million Dollars for Targeted Research Projects and Rescue Funds for Those Disrupted by COVID-19 https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Research/New-Research-Fall-2021.pdf
Positive Top-Line Phase 2B/3 Results for Masitinib in Progressive Forms of MS http:/ab-science.com/years/2020/188-positive-top-line-results-for-masitinib-in-progressive-forms-of-ms
STUDY: The Added Value of Cognition-Targeted Exercise Versus Symptom-Targeted Exercise for Multiple Sclerosis Fatigue: A Randomized Controlled Pilot Study https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0258752>
National MS Society: Exercise and Physical Activity Recommendations for ALL People with MS https://nationalmssociety.org/About-the-Society/News/Exercise-and-Physical-Activity-Recommendations-for
eSupport Health CONNECT Study *https://esupporthealth.com/connectstudy*
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for iOS Devices
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Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 228
Guests: Meagan Adamson, DNP, FNP-BC, MSCN
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
We're four days into 2022 and, for a lot of us, that means that we're four days into a new diet, four days into a new exercise regimen, or four days into some other life-changing behavior. Making healthy lifestyle changes is good for everyone and there's plenty of evidence that shows these kinds of behavioral changes can be especially beneficial if you're living with MS.
But too often, we see the well-intentioned resolutions that we make in January fade into distant memories by March. It doesn't have to be that way. Joining me to share strategies designed to help us maintain those new lifestyle choices throughout the year is Dr. Brooks Wingo, an Associate Professor at the University of Alabama Birmingham in the Department of Occupational Therapy and the Principal Investigator and Director of the Health Behavior and Disability Lab.
We're also taking a look back at some of the important MS research milestones that we talked about in 2021.
And we're taking a deep dive into understanding the patient's role in shared decision-making with their neurologist and why that makes where you look for information about MS more important than ever before.
We have a lot to talk about! Are you ready for RealTalk MS??!
Our look back at 2021 2:25
Where are we getting our information? 8:43
Dr. Brooks Wingo shares tips and strategies for keeping our New Year resolutions throughout the year...and why that especially matters if you're living with MS 17:49
Share this episode 32:48
Have you downloaded the free RealTalk MS app yet??? 33:08
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/227
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
National MS Society: Exercise and Physical Activity Recommendations for ALL People with MShttps://nationalmssociety.org/About-the-Society/News/Exercise-and-Physical-Activity-Recommendations-for
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 227
Guests: Dr. Brooks Wingo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Today, we're re-visiting my favorite conversation of the entire year and it seems that you and I agree! You've made it this year's most downloaded and listened-to episode.
In this episode, Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society, briefs us about some of the most interesting and important research shared at ECTRIMS 2021, the largest MS research conference in the world.
We have a lot to talk about! Are you ready for RealTalk MS??!
Wishing you a happy and healthy new year! :22
ECTRIMS 2021 research review with Dr. Bruce Bebo: :32
Share this episode 33:24
Have you downloaded the free RealTalk MS app??? 33:46
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/226
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 226
Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
I've always believed that the holiday season is an ideal time for reflection. For looking back and looking ahead. And in that spirit, today we're re-visiting two of the most important conversations that we've had this year on RealTalk MS.
When you consider the nearly one million people living with MS in the United States, you might conclude that MS doesn’t discriminate – it impacts people of all ages, sexual orientations, and ethnic backgrounds.
However, when you drill down a bit further and look at things like having access to quality MS care and even the course of the disease itself, it becomes apparent that MS is not an equal-opportunity disease.
My conversation with Dr. Mitzi Joi Williams about racial and ethnic disparities in MS underscores some of the systemic inequities that can produce significant burdens for members of minority communities.
Then, we'll switch gears and drop in on my conversation with Samantha Singer and Dr. Richard Ransohoff, the CEO and the Chief Medical Officer at Abata Therapeutics, a biotech startup that's working on a novel cell therapy for treating progressive MS. This therapy is designed to stop progression and it may, in fact, set the stage for remyelination to occur.
Abata seems to check all the boxes when you think about taking the best & brightest and putting them to work on solving progressive MS. This is a company that may be creating the future when it comes to effectively treating progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Happy Holidays! :22
Racial and Ethnic Disparities in MS with Dr. Mitzi Joi Williams: 1:09
A Potentially Transformational Treatment for Progressive MS with Samantha Singer and Dr. Richard Ransohoff 18:33
Share this episode 29:52
Have you downloaded the free RealTalk MS app??? 30:13
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Just copy this link & paste it into your text or email: https://realtalkms.com/225
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 225
Guests: Dr. Mitzi Joi Williams, Dr. Richard Ransohoff, and Samantha Singer
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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The 2021 holiday season is underway, and the availability of the COVID-19 vaccines means that this year, many of us are getting caught up in cooking, eating, drinking, shopping, and connecting face-to-face with family and friends. For some of us, it also means having that important but sometimes-awkward conversation about vaccine status.
For too many people, 'tis the season....to feel stressed. Stress can feel overwhelming and make everyday life challenging for anyone, but it can be especially challenging if you're living with an unpredictable disease like multiple sclerosis.
Returning to the podcast to share strategies that we can use to identify and manage stress when it strikes is advanced registered nurse practitioner, Megan Weigel. Megan specializes in neurological care, and she brings a unique integrative medicine and holistic nursing perspective to her practice.
We'll also share results of a study that shows you may already have everything you need to help reduce MS-related fatigue.
We'll tell you about research that shows that a low-cost over-the-counter product is effective in helping people living with MS get more and better-quality sleep.
We'll share the details of a new report that explains how systemic inequities have a direct effect on caregivers in minority communities.
And we'll give you the details about a new service from Amazon that turns your Alexa device into a caregiver's best partner.
We have a lot to talk about! Are you ready for RealTalk MS??!
A study reveals a simple non-pharmaceutical method to help reduce MS-related fatigue 1:06
This over-the-counter remedy has been shown to help you get more and better quality sleep 2:56
The National Alliance for Caregiving issues a new report identifying the systemic challenges facing caregivers in minority communities: 5:54
The new Amazon Together service can be an MS caregiver's best partner 7:23
Megan Weigel shares tips and strategies for reducing stress during the holiday season...and beyond 10:33
Share this episode 24:35
Have you downloaded the free RealTalk MS app??? 24:55
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Just copy this link & paste it into your text or email: https://realtalkms.com/224
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
First Coast Integrative Medicine https://firstcoastintegrativemedicine.com
STUDY: Effects of Exercise on Fatigue in Multiple Sclerosis: A Network Meta-Analysis Comparing Different Types of Exercisehttps://archives/pmr.org/article/S0003-9993(21)01417-9/fulltext#%20
National MS Society: Exercise and Physical Activity Recommendations for ALL People with MShttps://nationalmssociety.org/About-the-Society/News/Exercise-and-Physical-Activity-Recommendations-for
STUDY: Effects of Melatonin on Sleep Disturbances in Multiple Sclerosis: A Randomized, Controlled Pilot Study
https://journals.sagepub.com/doi/10.1177/20552173211048756
Caregiving in a Diverse America: Beginning to Understand the Systemic Challenges Facing Family Caregivers
https://www.caregiving.org/wp-content/uploads/2021/12/NAC_AmgenDiverseCaregiversReport_FinalDigital-112121.pdf
Amazon Together
https://amazon.com/Alexa-Together/b?ie=UTF8&node=21390531011
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for iOS Devices
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Give RealTalk MS a rating and review
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RealTalk MS Episode 224
Guests: Megan Weigel, DNP
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
If you're living with MS, you know by now that quitting smoking, getting exercise, and making smart food choices have all been shown to improve your physical health and your quality of life. There's one more tool that, when necessary, can be a game-changer.
Joining me to talk about how assistive technology can help people living with MS maintain their independence and improve their quality of life are assistive technology experts Alex Burnham and Bill Binko.
We'll also share one more reason why your most important preparation for the holiday season this year is making sure you're fully vaccinated.
We'll tell you about the International Progressive MS Alliance's proposal for coordinating global progressive MS research.
We'll share the results of a study that shows a significant percentage of older people living with MS who discontinue their DMT experience disease worsening and progression.
We'll tell you about a new grant that's been awarded to study adherence to MS oral disease-modifying therapies.
And you'll hear about the results of a study that shows an association between low levels of vitamin D and cognitive dysfunction at the onset of MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
There's a new reason to be vaccinated! 3:43
International Progressie MS Alliance's proposal for a global progressive MS research agenda 6:57
My goodbye to the Progressive MS Alliance Scientific Steering Committee 8:16
A study shows that older people who discontinue DMTs suffer disease worsening and progression 9:56
Researcher receives $100,000 to study MS oral DMT adherence 12:39
A study shows low levels of Vitamin D are associated with cognitive dysfunction at the onset of MS 15:22
Alex Burnham and Bill Binko discuss how assistive technology can be a difference-maker for people living with MS 18:51
Share this episode 37:47
Have you downloaded the free RealTalk MS app??? 38:08
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Just copy this link & paste it into your text or email: https://realtalkms.com/223
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
Charting a Global Research Strategy for Progressive MS -- An International Progressive MS Alliance Proposal https://journals.sagepub.com/doi/10.1177/13524585211059766
STUDY: Discontinuation of Disease-Modifying Therapies is Associated with Disability Progression Regardless of Prior Stable Disease and Agehttps://www.msard-journal.com/article/S2211-0348(21)00673-8/fulltext
STUDY: Real World Adherence To, and Persistence With, Once- and Twice-Daily Oral Disease Modifying Drugs in Patients with Multiple Sclerosis: A Systematic Review and Meta-Analysishttps://bmcneurol.biomedcentral.com/articles/10.1186/s12883-020-01830-0
STUDY: Serum Vitamin D as a Marker of Impaired Information Processing Speed and Early Disability in Multiple Sclerosis Patients
https://www.mdpi.com/2076-3425/11/11/1521/htm
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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RealTalk MS Episode 223
Guests: Alex Burnham and Bill Binko
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Tamara Kaye Sellman is a poet, short story writer, journalist, and essayist. So, when she was diagnosed with MS in 2013, Tamara did what she does best -- she began writing about it. That writing turned into Intention Tremor, a book of poetry and prose written over the five years following Tamara's diagnosis.
In this special episode, we'll talk with Tamara about how she chose to artistically interpret being diagnosed with MS. We'll discuss why she's quite literally invested in MS research. And Tamara will even share some of her poetry with us.
We have a lot to talk about! Are you ready for RealTalk MS??!
Welcome to a special episode! :22
My conversation with Tamara Kaye Sellman 1:18
Share this episode 34:03
Give RealTalk MS a rating and review 34:26
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Just copy this link & paste it into your text or email: https://realtalkms.com/222
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
Intention Tremor by Tamara Kaye Sellmanhttps://tksellman.com/intention-tremor
Join the RealTalk MS Facebook Group
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Give RealTalk MS a rating and review
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RealTalk MS Episode 222
Guests: Tamara Kaye Sellman
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Eating well is an important part of a wellness plan. At first glance, making healthy food choices seems simple. But with so much conflicting information and opinion masquerading as fact on websites and in social media, what do you believe and where do you begin?
Joining me to separate fact from fiction and share smart strategies that will get you started on solid nutritional footing is my guest, Mona Bostick. Mona is a registered dietician-nutritionist and a multiple sclerosis certified specialist who has been living with relapsing-remitting MS since 2008.
We'll also remind you about why your most important preparation for the holiday season this year is making sure you're fully vaccinated.
We'll tell you how cutting-edge genome-editing technology was used to identify a potential new drug target for treating and, perhaps, preventing MS.
We'll explain what digital biomarkers are, and we'll tell you why including them in the Phase 3 clinical trial for Tolebrutinib is a very good thing.
We have a lot to talk about! Are you ready for RealTalk MS??!
Some of the things I'm thankful for :22
Prepare for the holidays -- make sure you're vaccinated! 1:43
CRISPR used to identify new MS drug target 5:44
Tolebrutinib Phase 3 clinical trial will include digital biomarkers 8:09
Mona Bostick discusses the importance of making smart food choices if you're living with MS 11:31
Share this episode 25:50
Have you checked out The MS Caregiver Conundrum? 26:10
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Just copy this link & paste it into your text or email: https://realtalkms.com/221
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
MTHFD2 Is a Metabolic Checkpoint Controlling Effector and T Cell Fate and Functionhttps://www.sciencedirect.com/science/article/abs/pii/S1074761321004489
Tolebrutinib Phase 3 Clinical Trial Online Screener
https://mymstrials.com/screener
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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RealTalk MS Episode 221
Guests: Mona Bostick, RDN
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Before the availability of MRI technology in the 1980s, MS was frequently misdiagnosed or even missed completely. Today, an MRI exam is a valuable tool in diagnosing MS, following disease progression, and evaluating someone's response to their MS treatment.
Recently, a team of international experts updated the MRI recommendations for people living with MS. Dr. Scott Newsome, a member of that expert panel, is joining me today to talk about some of those recommendations and to help us understand how the new recommendations will impact your next MRI exam.
We're also talking about building a pediatric MS community with Emily Blosberg, the creator of Oscar the MS Monkey.
We'll tell you how you can catch the replay of the International Progressive MS Alliance webcast about fatigue in progressive MS. (They're sharing some excellent tips and resources for managing fatigue!)
And we'll tell you why the announcement of a study to identify the MS prodrome is very exciting news!
We have a lot to talk about! Are you ready for RealTalk MS??!
Progressive MS Alliance hosts a webcast about fatigue in progressive MS 2:03
About our show notes: 2:36
Meet Emily Blosberg and find out about her friend, Oscar the MS Monkey 4:18
Study of the prodromal phase of MS announced 13:59
Dr. Scott Newsome explains new MRI recommendations for MS 16:52
Share this episode 38:57
Have you checked out The MS Caregiver Conundrum? 39:18
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Just copy this link & paste it into your text or email: https://realtalkms.com/220
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
International Progressive MS Alliance Webcast:
Fatigue in Progressive MS
https://www.youtube.com/watch?v=v99I56RCdAc
Oscar the MS Monkeyhttp://www.mroscarmonkey.org/
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 220
Guests: Emily Blosberg and Dr. Scott Newsome
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
We met Dr. AJ Joshi, Chief Medical Officer at Atara Biotherapeutics, at ECTRMS 2019, when he gave us our first update on ATA 188, Atara's investigational cell therapy for MS.
This is the third year in a row that we've connected with Dr. Joshi during ECTRIMS for an update on the progress of ATA 188. This year, he's also sharing news about an unexpected discovery that investigators encountered during their Phase 1 clinical trial (HINT: It's a pretty interesting discovery!)
We'll get an advocacy update from Bari Talente, the National MS Society's Executive Vice-President of Advocacy and Healthcare Access as we discuss the benefits that the Build Back Better Act could deliver to people affected by MS.
November is National Caregivers Month and, in today's episode, we'll also meet Monica and Stan Wilson, a couple who are amazing examples of how teamwork can overcome some of the challenges of life with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
It's National Caregivers Month :22
Bari Talente, Executive Vice-President of the National MS Society, talks about how the Build Back Better Act delivers real benefits to people affected by MS 6:05
Monica and Stan Wilson share how they work together as a team 14:24
All the info on this month's Can Do MS Programs 25:06
Dr. AJ Joshi gives us an update on ATA188 26:24
Share this episode 39:22
Download the free RealTalk MS app 39:42
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Just copy this link & paste it into your text or email: https://realtalkms.com/219
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
National MS Society: aHSCT in MS https://nationalmssociety.org/ahsct
Can Do MS Program Information and Registration
https://www.cando-ms.org/programs
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 219
Guests: Bari Talente, Monica and Stan Wilson, Dr. AJ Joshi
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Just a couple of weeks ago, 9,000 MS research scientists and clinicians from 100 countries gathered virtually for the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis, otherwise known as ECTRIMS. The largest MS research conference in the world lived up to its name, featuring 200 speakers and 1,700 research abstracts.
In what has become an annual RealTalk MS tradition, Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society, joins us to share his thoughts about the research presented at ECTRIMS that will lead to treatments designed to stop MS progression, restore lost function, and end MS forever.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/218
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 218
Guests: Dr. Bruce Bebo and Dr. AJ Joshi
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, ECTRIMS2021, RealTalkMS
Privacy Policy
Research shows that more than 50% of the people living with MS will experience another chronic health condition in their lifetime. These additional health conditions, known as comorbidities, have been shown to negatively affect disability progression and health-related quality of life. In other words, living with comorbidities makes living with MS more challenging than it has to be.
Joining me to talk about living with MS while managing and even avoiding comorbidities is Dr. Alissa Willis, Chair of the Department of Neurology at the University of Mississippi Medical Center.
I'm also sharing my take-aways after watching Introducing, Selma Blair, the documentary film that portrays Selma Blair's MS journey and her stem cell therapy treatment.
You'll hear some thoughts about why including patients in conference presentations about the patient perspective might just be a good idea.
You'll meet MS patient advocate Julie Stamm when we talk with Julie about her new children's book, SOME DAYS: A Tale of Love, Ice Cream, and My Mom's Chronic Illness. (And we'll tell you how you can win your own copy of Julie's book!)
And we'll share completely different outcomes from two mesenchymal stem cell clinical trials.
We have a lot to talk about! Are you ready for RealTalk MS??!
Some thoughts about the documentary film, Introducing, Selma Blair 1:12
Don't forget the patients in presentations about the patient perspective 9:14
MS patient advocate Julie Stamm talks about her new children's book, SOME DAYS: A Tale of Love, Ice Cream, and My Mom's Chronic Illness 11:25
Two Mesenchymal Stem Cell clinical trial outcomes 19:49
Dr. Alissa Willis discusses living with MS while managing and even avoiding comorbidities 23:01
Share this episode 37:16
Catch Episode 7 of The MS Caregiver Conundrum 37:37
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ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
National MS Society: aHSCT in MS https://nationalmssociety.org/ahsct
STUDY: Safety, Tolerability, and Activity of Mesenchymal Stem Cells Versus Placebo in Multiple Sclerosis (MESEMS): A Phase 2 Randomised, Double-Blind Crossover Trial https://www.sciencedirect.com/science/article/pii/S147444222100301X?dgcid=coauthor
STUDY: Central Nervous System Atrophy Predicts Future Dynamics of Disability Progression in a Real-World Multiple Sclerosis Cohort https://onlinelibrary.wiley.com/doi/epdf/10.1111/ene.15098
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 217
Guests: Julie Stamm and Dr. Alissa Willis
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
The annual health insurance open enrollment period has begun! And a lot of people tend to get through open enrollment on autopilot, assuming that the health insurance that they had last year will continue to serve them well next year. But policies change. Physician networks change. And prescription drug formularies change. If you're living with MS, you can't afford to be on autopilot when it comes to making health insurance decisions. Those decisions can cost you -- in time, money, and unnecessary heartache.
Every year during open enrollment, the National MS Society's MS Navigators help a lot of people make the best health insurance decisions for themselves and their families. So, I'm thrilled to be talking about all the things you want to carefully consider during open enrollment with MS Navigator Nicole Vasquez.
We're also talking about a study that illustrates how the social determinants of health play a significant role in creating healthcare disparities among members of minority communities who are living with MS.
We'll tell you about two companies that are partnering to test the effectiveness of an AI-powered app at predicting MS progression by tracking eye movement.
You'll hear about the biopharmaceutical company that's hoping to treat relapsing-remitting MS with an ingredient used in ancient Chinese medicine.
We'll remind you that Big October 2021 is happening right now, and you still have time to participate.
And we'll share the Top 10 Best and Worst Cities in the U.S. for People with Disabilities.
We have a lot to talk about! Are you ready for RealTalk MS??!
Social determinants of health impact healthcare disparities among members of minority communities who are living with MS 2:34
Novartis Canada teams up with Innodem to test innovative tech that may predict MS progression 5:44
Medsenic is hoping to treat relapsing-remitting MS with an ingredient used in ancient Chinese medicine 7:43
The 10 Best and Worst Cities in the U.S. for People Living with Disabilities 9:32
Big October 2021 is happening now! Are you registered? 12:18
Nicole Vasquez tells us what we need to be thinking about during open enrollment 13:22
Share this episode 28:49
Catch Episode 6 of The MS Caregiver Conundrum 29:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/216
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
STUDY: Health Disparities, Inequities, and Social Determinants of Health in Multiple Sclerosis and Related Disorders in the US: A Reviewhttps://jamanetwork.com/journals/jamaneurology/article-abstract/2784442
2021's Best and Worst Cities for People with Disabilities https://wallethub.com/edu/best-worst-cities-for-people-with-disabilities/7164
Register for Big October 2021
https://cvent.me/0Kbo4e?rt=FHc6yg95SUyNOD1m6wi5iw&RefId=Attendee
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 216
Guest: Nicole Vasquez
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
After reviewing evidence on the use of autologous hematopoietic stem cell transplantation (aHSCT) for the treatment of multiple sclerosis, the National MS Society has concluded that aHSCT is a good treatment option for some people living with MS.
Dr. Jeffrey Cohen, the Director of the Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research, joins me this week to share all the details about aHSCT and explain who is and who isn't an ideal candidate for this treatment.
We'll also tell you about the National MS Society's mini-site that's dedicated to aHSCT.
We have more good news to share about a new category of disease-modifying therapy.
There's a new study that may solve some sleep problems associated with MS. We'll tell you how you can participate!
And we'll explain why it looks like the National MS Society is now part of the Marvel Universe!
We have a lot to talk about! Are you ready for RealTalk MS??!
We're in the top 1.5%!! :22
National MS Society launches stem cell therapy mini-site 1:39
Recruitment completed for Evobrutinib Phase 3 clinical trial 5:16
How you can participate in the iSleepMS study 13:53
Has the National MS Society entered the Marvel Universe??? 8:05
Dr. Jeffrey Cohen discusses stem cell therapy for MS 9:49
Share this episode 31:03
Catch Episode 5 of The MS Caregiver Conundrum 31:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/215
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
National MS Society aHSCT Mini-Site
https://nationalmssociety.org/aHSCT
iSleepMS Online Screening Form
https://tinyurl.com/iSleepMS
Darkhawk Issue #2https://www.amazon.com/Darkhawk-2-5-Kyle-Higgins-ebook/dp/B097QHWVVD
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 215
Guest: Dr. Jeffrey Cohen
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Stemcells, RealTalkMS
Privacy Policy
Getting a good night's sleep is often easier said than done. About half of the people living with MS experience sleep disorders. Dr. Abbey Hughes is joining me to talk about how sleep and lack of sleep affects MS, and she'll share some specific strategies that you can use to better manage sleep difficulties and get the rest that your mind and body require.
We're also sharing a very encouraging update on ATA 188, Atara Biotherapeutics experimental stem cell therapy.
Investigator Dr. Anthony Traboulsee joins me to share an update on the Phase 2b clinical trial for Tolebrutinib, one of a new class of disease-modifying therapies.
We're also talking about the plans to add accessible gym equipment to Planet Fitness locations throughout the U.S.
And we'll give you the details and tell you how to register for all the CAN DO MS programs being offered throughout the month of October.
We have a lot to talk about! Are you ready for RealTalk MS??!
Update on ATA 188 stem cell therapy 1:21
Investigator Dr. Anthony Traboulsee with an update on Tolebrutinib clinical trial 4:02
Planet Fitness is adding accessible gym equipment 12:06
Can Do MS October programs 13:53
Dr. Abbey Hughes discusses overcoming sleep disorders in MS 16:03
Share this episode 29:27
Catch The MS Caregiver Conundrum 29:48
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/214
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
Can Do MS Program Info and Registration
https://cando-ms.org/programs
Register for Big October 2021https://cvent.me/0Kbo4e?rt=FHc6yg95SUyNOD1m6wi5iw&RefId=Attendee
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 214
Guest: Dr. Anthony Traboulsee and Dr. Abbey Hughes
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century.
It's often said that MS doesn't just affect individuals, it affects families. And in this special episode of RealTalk MS, we're talking about family involvement in MS care with Dr. Alice Laroni and Trishna Bharadia.
Dr. Laroni is a neurologist with over 18 years of experience providing clinical care to MS patients and more than 13 years of experience in neuroimmunological research. Dr. Laroni is also an Assistant Professor of Neurology at the University of Genova.
Trishna Bharadia was diagnosed with MS in 2008, at the age of 28. She's a multi-award-winning health advocate and patient engagement advisor dedicated to raising awareness and finding solutions for people living with MS.
Both Trishna and Alice are active members of the MS in the 21st Century initiative. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
If you're on an MS disease-modifying therapy and you're concerned about how effective your COVID-19 vaccination might be, or you aren't sure whether having MS qualifies you as being immunocompromised and cleared to receive a third dose of the COVID-19 vaccine, or you can't begin to figure out whether you qualify to receive a COVID-19 booster, then this podcast episode is for you.
Joining me to help us make sense of the flurry of recent announcements by the CDC and provide us with an update on his lab's work in looking at the immune response to COVID-19 vaccines among people living with MS who are on b-cell depleting therapies is the Chief of the Division of Multiple Sclerosis and Related Disorders and the Director of the Center for Neuroinflammation and Experimental Therapeutics at the University of Pennsylvania, Dr. Amit Bar-Or.
If you're living with MS in the U.K., we'll update you on your eligibility to receive a COVID-19 booster.
If you're living with MS in the European Union, we'll update you on the EMA's recommendation of Vumerity, an oral disease-modifying therapy for adults with relapsing-remitting MS.
We'll tell you about a drug that's been on the market for over a decade that's been shown to help manage overactive bladder among people living with MS.
Imagine having your phone send you an email or text letting you know that you're showing early signs of depression or cognitive dysfunction. We're talking about potentially game-changing technology that Apple is developing for the iPhone.
And we'll share the details of Episode 3 of The MS Caregiver Conundrum, which debuts Thursday, September 30th. Parenting includes its own set of caregiving responsibilities. Imagine adding the additional responsibilities that go with caring for a child with MS. In Episode 3, of The MS Caregiver Conundrum, we'll meet two remarkable moms, each of whom is not only a parent but a caregiver for a child living with pediatric MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Vaccine booster shots for people with MS in the U.K. 2:04
Vumerity for people with MS in the European Union? 3:48
Drug helps treat overactive bladder among people with MS 4:30
Apple is developing tech to identify depression and cognitive decline 6:11
Dr. Amit Bar-Or updates us on who gets a COVID-19 vaccine booster, who gets a 3rd dose, and all the rest 8:37
Share this episode 26:50
Catch The MS Caregiver Conundrum 27:10
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/213
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
STUDY: Efficacy of Fesoterodine Fumarate (8 mg) in Neurogenic Detrusor Overactivity Due to Spinal Cord Lesion or Multiple Sclerosis: A Prospective Studyhttps://onlinelibrary.wiley.com/doi/10.1002/nau.24790
Register for Big October 2021https://cvent.me/0Kbo4e?rt=FHc6yg95SUyNOD1m6wi5iw&RefId=Attendee
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 213
Guest: Dr. Amit Bar-Or
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Early in your MS journey, it's not uncommon to experience minor walking and gait issues. And people living with advanced MS often face more serious mobility challenges. The good news is that rehabilitation can help people on either end of the "mobility spectrum" improve. But different mobility challenges require different approaches to rehabilitation.
Joining me to talk about mobility rehabilitation for people who are more recently diagnosed with MS as well as rehabilitation for people living with advanced MS are experts Dr. Herb Karpatkin and Cinda Hugos.
RealTalk MS is celebrating its 4th birthday today and we wouldn't be here without you. So before we get too far into this episode, I want to say thank you!!
The Black MS Experience Summit gets underway tomorrow. If you haven't yet registered, we'll tell you how.
And we'll share the details of Episode 2 of The MS Caregiver Conundrum, which debuts Thursday, September 23rd. When your spouse or partner is the person who's living with MS, you have your role as their caregiver but you also have your role as their significant other -- their partner in the relationship. For a lot of caregivers, trying to balance those two roles can be challenging. In Episode 2 of The MS Caregiver Conundrum, we'll meet a couple who has not only met that particular challenge, but they've overcome it in amazing fashion.
EJ Levy, the Founder and President of MS Hope for a Cure, joins us with a preview of Big October 2021. This month-long event is designed especially for people affected by MS, and this year, Big October is bigger and better than ever. We'll be sure to tell you how to register for this free event.
The National MS Society recently announced an $8.7 million dollar investment in 29 new research training fellowships, early career awards, and other special initiatives. We'll show you how all of these projects align with the MS Society's Pathways to Cures roadmap. We'll even tell you how you can get your own copy of the Pathways to Cures roadmap!
We have a lot to talk about! Are you ready for RealTalk MS??!
It's our birthday! :22
Get the details about the Black MS Experience Summit 4:04
The MS Caregiver Conundrum Episode 2 debuts Thursday 9/23 4:51
EJ Levy gives us a preview of Big October 2021 6:46
How the National MS Society's new $8.7 million dollar investment aligns with the Pathways To Cures roadmap 21:18
Dr. Herb Karpatkin and Cinda Hugos discuss mobility rehabilitation early and late in your MS journey 24:25
Share this episode 42:53
Catch The MS Caregiver Conundrum 43:14
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/212
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
The National MS Society Black MS Experience Summit https://nationalmssociety.org/blackmsexperience
Register for Big October 2021https://cvent.me/0Kbo4e?rt=FHc6yg95SUyNOD1m6wi5iw&RefId=Attendee
National MS Society New Research Summer 2021
https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Research/New-Research-Summer-2021.pdf
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 212
Guest: EJ Levy, Dr. Herb Karpatkin, and Cinda Hugos
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Having a job matters. Most obviously, employment provides the economic resources that people need to more easily manage every other aspect of their lives. Perhaps less obviously, we tend to define ourselves through our work. And without work, we not only face potential economic hardship, we sometimes lose that inner sense of purpose or identity...of understanding who we are.
The majority of people living with MS are diagnosed between the ages of 20 and 45. And these are the years when you're often focused on building a career and increasing your earning power. Many people living with MS decide to leave the workforce prematurely because they aren't aware of all their employment-related options. Like so many other aspects of living with multiple sclerosis, managing your employment requires a strategy.
My guest is employment and disability expert Dr. Phillip Rumrill, and we're devoting this entire episode of RealTalk MS to talk about the many aspects of unemployment that people living with MS need to know about.
We have a lot to talk about! Are you ready for RealTalk MS??!
(If you'd like a little more to talk about, don't miss Episode #1 of The MS Caregiver Conundrum. This week's guest is Kate Washington, author of Already Toast: Caregiving and Burnout in America.)
The MS Caregiver Conundrum podcast premieres in 2 days! :22
Dr. Phillip Rumrill discusses employment and MS 2:11
Share this episode 38:52
Catch The MS Caregiver Conundrum 39:13
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/211
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The National MS Society Black MS Experience Summit
https://nationalmssociety.org/blackmsexperience
The MS Caregiver Conundrum Podcast
https://mscaregiverconundrum.com
National MS Society: Employment and MS
https://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Employment
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 211
Guest: Dr. Phillip Rumrill
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Caregiving RealTalkMS
Privacy Policy
Cognitive issues affect a majority of people living with MS and experts often recommend a cognitive assessment as the first step in managing cognitive dysfunction. But what's that cognitive assessment all about?
Patient advocate Cathy Chester has been living with MS since 1986 and she just recently underwent her own 3-hour cognitive assessment. Cathy is joining me to walk us through her experience. And if you're wondering what a cognitive assessment is all about and how it might help you, you won't want to miss our conversation.
We're also sharing all the details about our new special 8-episode podcast series, The MS Caregiver Conundrum. Episode 1 premieres on September 16th, and you're hearing about it first!
We'll get you up to speed on the National MS Society's upcoming Black MS Experience Summit.
And we'll tell you about the results of a study that shows how living with both depression and MS can become a matter of life and death.
We're also talking about newly published study results that could mean good news for people on anti-cd20 disease-modifying therapies about the efficacy of the COVID-19 mRNA vaccines.
We'll tell you about a study that compared the two strategies for choosing your first disease-modifying therapy (and we'll tell you which strategy led to better patient outcomes).
And we'll let you know how you can participate in MS research without leaving the comfort and safety of your own home and you might even win a $100 Amazon gift card!
We have a lot to talk about! Are you ready for RealTalk MS??!
Introducing The MS Caregiver Conundrum podcast 1:32
Get the details about the Black MS Experience Summit 3:34
Study shows that MS + Depression = seriously bad news 4:29
Study reveals robust T-cell response to mRNA vaccines among people on anti-cd20 disease-modifying therapies 9:04
Study offers evidence in the induction vs escalation DMT debate 11:33
A study is looking at complementary and alternative treatments for MS and you can participate 16:20
Cathy Chester shares the details of her cognitive assessment 19:09
Share this episode 32:25
Catch The MS Caregiver Conundrum 32:46
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/210
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
The National MS Society Black MS Experience Summit https://nationalmssociety.org/blackmsexperience
STUDY: Interface of Multiple Sclerosis, Depression, Vascular Disease, and Mortality: A Population-Based Matched Cohort Study
https://n.neurology.org/content/early/2021/09/01/WNL.0000000000012610
Discordant Humoral and T-Cell Immune Response to SARS-Cov-2 Vaccination in People with Multiple Sclerosis on Anti-CD20 Therapy
https://www.medrxiv.org/content/10.1101/2021.08.23.21262472v1
Treatment Escalation vs Immediate Initiation of High-Efficacy Treatment for Patients with Relapsing-Remitting Multiple Sclerosis: Data from 2 Different National Strategies
https://jamanetwork.com/journals/jamaneurology/fullarticle/2783261
iConquer MS
https://iconquerms.org
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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Give RealTalk MS a rating and review
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RealTalk MS Episode 210
Guest: Cathy Chester
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Madison Copot was diagnosed with MS about 9 years ago, just before turning 13. And when she received her diagnosis, Madison was also told that she was too young to be seen by an MS specialist. Today, Madison is a 21-year old young woman, and if you want to hear what a real-life superhero sounds like, you won't want to miss my conversation with Madison.
While we're on the subject of superheroes, we'll tell you about Darkhawk, who debuted last week as the first Marvel superhero to be diagnosed with MS.
We're sharing the American Academy of Neurology's COVID-19 vaccine guidance. And we have a very specific message to share with anyone living with MS who is still on the fence about being vaccinated.
You'll learn about new NIH-funded research that may extend our understanding of how MS happens.
We'll also tell you about a clinical trial getting underway in the U.K. that's exploring whether Mavenclad can slow the worsening of hand and arm function in people with progressive MS.
And we'll share the line-up of no-cost CAN-DO MS virtual programs taking place throughout the month of September.
We have a lot to talk about! Are you ready for RealTalk MS??!
Darkhawk returns...and this time, he has MS :22
AAN issues its formal COVID-19 vaccine guidance 2:34
NIH-funded research will examine cell communication in the central nervous system 6:59
CHARIOT-MS clinical trial launches in the U.K. 9:54
CAN-DO MS September programs focus on staying in charge of your life 11:28
My conversation with Madison Copot 13:43
Share this episode 26:52
Download the free RealTalk MS app for your iOS or Android device 27:13
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/209
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
Darkhawk (2021) Issue 1
https://www.amazon.com/Darkhawk-1-5-Kyle-Higgins-ebook/dp/B095836W91/
COVID-19 and Vaccination in the Setting of Neurologic Disease: An Emerging Issue in Neurology
https://n.neurology.org/content/early/2021/07/29/WNL.0000000000012578
ChariotMS Clinical Trial
https://www.mssociety.org.uk/research/explore-our-research/research-we-fund/search-our-research-projects/can-cladribine-slow
Can-Do MS September Programs
https://www.cando-ms.org/programs
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 209
Guest: Madison Copot
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID-19, Marvel, RealTalkMS
Privacy Policy
The FDA has authorized a third dose of the COVID-19 mRNA vaccines. What does this mean for people living with MS? Are you eligible for a third dose now? Are you eligible in September? How will your disease-modifying therapy effect that third dose? What if you received the Johnson & Johnson vaccine? And who is that Regeneron monoclonal antibody cocktail for?
Dr. Nancy Sicotte joins me with an update on vaccines, variants, boosters, and antibodies, explaining how they all may impact people living with MS. Dr. Sicotte is a professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles, where she is the Women's Guild Distinguished Chair in Neurology and Director of the MS and Neuroimmunology Program. Dr. Sicotte also Chairs the MS Society’s National Medical Advisory Committee and leads its COVID-19 Vaccine Advisory Group.
We're also talking with Victoria Holmes, a nurse practitioner who is living with MS. Like some others who are living with MS, Victoria was initially hesitant to get vaccinated. Victoria is joining me to talk about what changed her mind and she has a message to share with others who may still be vaccine-hesitant.
We have a lot to talk about! Are you ready for RealTalk MS??!
Dr. Nancy Sicotte updates us on COVID-19 vaccines, variants, boosters, antibodies, and more :22
Victoria Holmes talks about her vaccine hesitancy 29:18
Share this episode 39:13
Download the free RealTalk MS app for your iOS or Android device 39:33
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Just copy this link & paste it into your text or email: https://realtalkms.com/208
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society Additional (3rd) COVID-19 Vaccine Dose Guidance for People Living with MS
https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 208
Guest: Dr. Nancy Sicotte and Victoria Holmes
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID-19, RealTalkMS
Privacy Policy
Imagine being able to see improvement in cognition, motor function, and self-esteem, while enhancing neurological functions like walking and speech without taking another pill or even breaking a sweat.
Joining me to talk about the evidence-based benefits that people living with MS can gain through music and art therapy are Dr. Meera Rastogi, Veronica DeNoma, and Betsy Hartman.
We're also talking about the shocking and deeply concerning outcome of a study used to validate the reliability of a new tool to measure MS caregiver abuse.
We'll tell you how Zoom is working to make telehealth appointments better for everyone.
We're sharing the results of a study that measured the efficacy of a phone-based app to manage anxiety among young people diagnosed with pediatric MS.
Think you might like rock-climbing in the Rockies or whitewater kayaking on the Rogue River in Oregon? We'll give you the details of First Descents' 2022 outdoor adventures that are available at no cost to young adults living with MS.
And we'll remind you that Burgers to Beat MS is happening in Canada this Thursday. Find out how you can be a part of it no matter where you live!
We have a lot to talk about! Are you ready for RealTalk MS??!
Burgers to Beat MS happens this Thursday! :22
STRESS-MS measures MS caregiver abuse 2:46
Zoom is making improvements to telehealth 7:02
An app to reduce anxiety among young people diagnosed with pediatric MS 9:33
Free rock-climbing and whitewater kayaking adventures for young adults living with MS 13:17
Dr. Meera Rastogi, Veronica DeNoma, and Betsy Hartman discuss how art and music therapy can deliver real benefits to people living with MS 16:58
Share this episode 33:45
Download the free RealTalk MS app for your iOS or Android device 34:05
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/207
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Burgers to Beat MS
https://BurgersToBeatMS.ca
STUDY: Validity and Reliability of the Scale to Report Emotional Stress Signs -- Multiple Sclerosis (STRESS-MS)
https://meridian.allenpress.com/ijmsc/article/doi/10.7224/1537-2073.2020-016/467361/Validity-and-Reliability-of-the-Scale-to-Report
STUDY: Mobile Attention Bias Modification Training Is a Digital Health Solution for Managing Distress in Multiple Sclerosis: A Pilot Study in Pediatric Onset
https://www.frontiersin.org/articles/10.3389/fneur.2021.719090/full****
First Descents Outdoor Adventure Program Application
https://firstdescents.org/programs/programs-application/
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 207
Guest: Dr. Meera Rastogi, Veronica DeNoma, and Betsy Hartman
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
If you've ever wondered about whether MS advocacy makes a real difference, please consider that last year alone, MS Activists helped to bring about these changes:
- $10 Million increase in funding for the Congressionally-Directed MS Research Program
- $3 Billion increase in funding for the National Institutes of Health
- Sustained funding for the CDC's National Neurological Conditions Surveillance System (studying MS is one of the first 2 pilot projects for this new program)
- Passage of the CREATES Act (designed to lower prices and increase competitiveness in generic drug development)
Beyond these milestone achievements, advocating on behalf of your own interests is a personally empowering experience. Joining me to talk about what advocacy is all about is MS Activist Jenna Green.
We're also sharing the details of a clinical trial that measured the effects of the Wahls Diet and the Swank Diet on MS-related fatigue and quality of life.
We'll tell you about a study that identified a potential biomarker for MS-related cognitive decline.
We're talking about the FDA approval of Botox as a treatment for upper-limb spasticity.
And we'll let you know how you can support the MS Society of Canada by buying a burger.
We have a lot to talk about! Are you ready for RealTalk MS??!
This part is all about you :22
Study measures the effects of Wahls Diet and Swank Diet on MS-related fatigue and quality of life 4:03
Study identifies potential biomarker for MS-related cognitive decline 6:58
FDA approves Botox for managing upper-limb spasticity 10:35
A&W's Burgers to Beat MS benefits MS Society of Canada 11:34
MS Activist Jenna Green talks about what advocacy means and why it matters 14:05
Share this episode 31:46
Download the free RealTalk MS app for your iOS or Android device 32:06
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/206
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Advocate for Change -- Be an MS Activist
https://nationalmssociety.org/advocacy
STUDY: Impact of the Swank and Wahls Elimination Dietary Interventions on Fatigue and Quality of Life in Relapsing-Remitting Multiple Sclerosis: The WAVES Randomized Parallel-Arm Clinical Trialhttps://journals.sagepub.com/doi/10.1177/20552173211035399
STUDY: Cognitive Decline in Multiple Sclerosis is Related to the Progression of Retinal Atrophy and Presence of Oligoclonal Bands: A 5-Year Follow-Up Studyhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8315759/
Updated Botox label information
https://media.allergan.com/actavis/actavis/media/allergan-pdf-documents/product-prescribing/20190620-BOTOX-100-and-200-Units-v3-0USPI1145-v2-0MG1145.pdf
Burgers to Beat MS
https://BurgerstoBeatMS.ca
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 206
Guest: Jenna Green
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, RealTalkMS
Privacy Policy
Just a few weeks ago, life sciences company Abata Therapeutics came out of stealth mode, unveiling a $95 million dollar investment in a novel cell therapy to treat progressive MS.
Joining me to talk about this potentially transformational treatment for progressive MS are the President and CEO of Abata Therapeutics, Samantha Singer, and Dr. Richard Ransohoff, one of the company's co-founders as well as its Chief Medical Officer.
We'll also give you a sneak peek at a study that measured the impact of COVID-19 on people with MS in New York City.
We'll tell you about a study that examined the viability of at-home Tysabri infusions.
We'll share the details of the Can Do MS virtual programs that are happening all month long.
And we'll let you know how you can attend Dawnia Baynes's celebration for the entire MS community (did we mention that it's taking place in a very cool virtual world?!!!).
We have a lot to talk about! Are you ready for RealTalk MS??!
Abata Therapeutics unveils potentially transformational cell therapy for progressive MS :22
Study measures effects of COVID-19 on people with MS in New York City 11:18
Study examines the viability of at-home Tysabri infusions 14:26
Can Do MS virtual programs for August 16:04
Award-winning MS activist and support group leader Dawnia Baynes is throwing a party -- and you're invited 17:51
Share this episode 30:44
Download the free RealTalk MS app for your iOS or Android device 31:12
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/205
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Abata Therapeuticshttps://abatatx.com/
STUDY: Home Infusions of Natalizumab for People with Multiple Sclerosis: A Pilot Randomised Crossover Trialhttps://onlinelibrary.wiley.com/doi/10.1002/acn3.51410
Can Do MS August Program Info and Registration
https://cando-ms.org/programs
Dawnia's "15" Celebrationhttps://15presentedbybrightside365.eventbrite.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 205
Guest: Samantha Singer, Dr. Richard Ransohoff, Dawnia Baynes
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, AbataTherapeutics, RealTalkMS
Privacy Policy
Research shows that members of minority communities often experience MS differently. And by differently, we mean worse. -- more severe symptoms, shorter time to disability, and greater levels of disability. That's why ensuring greater diversity in clinical research is of urgent importance.
At the same time, the conversation about putting the patient at the center of MS research has grown louder and more pronounced.
Major pharmaceutical companies have gotten both of these messages and joining me to talk about increasing diversity and ensuring patient-centricity in MS clinical research is Tanja Keiper, Director in the Clinical Delivery Unit of EMD Serono.
We'll also update you on the progress that MS activists are making as our key legislative issues work their way through Congress.
We'll tell you about an interesting study about stress triggers and the stress coping mechanisms most often used by people living with MS.
We're talking about a smartphone app that, one day, might provide your neurologist with a digital biomarker of MS-related cognitive changes.
And we'll share the details of a powerful new supercomputer that's busy studying multiple sclerosis so that it can create brand new MS therapies.
We have a lot to talk about! Are you ready for RealTalk MS??!
MS advocacy update :22
Study looks at stress triggers and stress coping mechanisms among people living with MS 5:52
A smartphone app to measure MS-related cognitive changes 9:20
A powerful new supercomputer is trying to figure out MS 11:41
Tanja Keiper talks about how EMD Serono is working to increase diversity and ensure patient-centricity in MS clinical research 14:29
Share this episode 27:04
Download the free RealTalk MS app for your iOS or Android device 27:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/204
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: The Role of Stress Perception and Coping with Stress and the Quality of Life Among Multiple Sclerosis Patients
https://www.dovepress.com/the-role-of-stress-perception-and-coping-with-stress-and-the-quality-o-peer-reviewed-fulltext-article-PRBM p>STUDY: Reliability, Construct, and Concurrent Validity of a Smartphone-Based Cognition Test in Multiple Sclerosishttps://journals.sagepub.com/doi/10.1177/13524585211018103
evolutionRMS Studieshttps://www.evolutionstudies.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 204
Guest: Tanja Keiper
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, EMDSerono, RealTalkMS
Privacy Policy
Summertime traditionally means getting out of the house, enjoying outdoor activities, and being active. But if you're living with MS, outdoor activity and summertime temperatures can raise red flags when it comes to your day-to-day quality of life.
My guest is Dr. Colin Lenington, an Occupational Therapist and Clinical Specialist at the VA Long Beach Healthcare System and we're talking about getting outside, staying safe, and keeping cool while you enjoy your summer activities.
We're joining the World Federation of Neurology and the global MS community on July 22nd, to celebrate World Brain Day 2021. This year's theme is Stop Multiple Sclerosis and we'll tell you where and how to register for the upcoming World Brain Day webinar.
We're also talking about study results that show the impact of delaying an Ocrevus infusion in order to enhance the effect of a COVID-19 vaccination.
We'll tell you about a study in the U.K. that followed 120 people with MS who received autologous hematopoietic stem cell transplantation (aHSCT).
We'll share news about a new way to successfully cross the blood-brain barrier and deliver medicines to the central nervous system. (And we'll explain why that matters when it comes to treating MS)
And we'll tell you about a study of veterans with MS that should convince anyone to adhere to their DMT treatment plan.
We have a lot to talk about! Are you ready for RealTalk MS??!
July 22nd is World Brain Day! :22
My live conversation with Dr. Victoria Leavitt takes place this Wednesday, on the eSupport Health Wednesday Workshop :55
Study shows the effect of extended interval dosing of Ocrevus 2:46
Study shows real-world outcomes for 120 people with MS who received aHSCT 5:49
Biopharmaceutical company successfully delivers an anti-inflammatory molecule across the blood-brain barrier 7:43
Study shows the benefits of adhering to DMTs 9:03
Dr. Colin Lenington talks about how to enjoy summertime activities while staying safe and staying cool 11:24
Share this episode 24:25
Catch my live conversation with Dr. Victoria Leavitt on Wednesday 24:48
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/203
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
World Brain Day 2021 https://wfneurology.org/world-brain-day-2021
Register for the eSupport Health Wednesday Workshop:
A Conversation with Jon Strum https://esupporthealth.zoom.us/meeting/register/tJEpc--rqT0vHdJ6FbPDH7S1enOrLYAIQG-K
STUDY: Ocrelizumab Extended Interval Dosing in Multiple Sclerosis in Times of COVID-19https://nn.neurology.org/content/8/5/e1035
STUDY: Autologous Haematopoietic Stem Cell Transplantation in Active Multiple Sclerosis: A Real-World Case Serieshttps://n.neurology.org/content/early/2021/07/12/WNL.0000000000012449
Bioasis Announces Positive Results from Efficacy Study of xB3TM -1L-1RA in a Model of Multiple Sclerosis https://www.globenewswire.com/news-release/2021/07/07/2259430/0/en/Bioasis-Announces-Positive-Results-From-an-Efficacy-Study-of-xB3-IL-1RA-in-a-Model-of-Multiple-Sclerosis.html
STUDY: The Impact of Adherence to Disease-Modifying Therapies on Functional Outcomes in Veterans with Multiple Sclerosis https://journals.sagepub.com/doi/pdf/10.1177/11795735211028769
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 203
Guest: Dr. Colin Lenington
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
In medicine, a prodrome is a set of signs or symptoms that can appear years before the major symptoms of an illness develop. Recognizing the prodromal phase of MS could mean that, one day, someone who is highly likely to be diagnosed with multiple sclerosis could receive proactive treatment years in advance and, perhaps, never develop any MS symptoms.
Dr. Helen Tremlett, a professor, and the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia, is joining me this week to discuss how understanding the MS prodrome can fundamentally change the way that MS is diagnosed and treated.
We'll also tell you about a study that shows early treatment with high-efficacy disease-modifying therapies can significantly reduce relapse rates for people living with active secondary progressive MS.
We'll share results from a study that shows, on their first visit to a neurologist, Black people have more severe MS than White people.
We'll tell you about two Phase 3 clinical trials that have just received approval from the U.S. Food & Drug Administration.
We'll share the results of a Belgian study that analyzed the efficacy of a cannabis spray in treating MS spasticity and improving quality of life.
And we'll give you a heads-up about a new web series that features raw, unfiltered conversations about the good, bad, and messy parts of living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
What is the MS prodrome? :22
Does early treatment with high-efficacy DMTs reduce relapse rates in people with secondary progressive MS? 2:32
Study shows Blacks with MS present with more severe disease and greater disability than Whites 5:54
FDA approves 2 Phase 3 clinical trials for a potential disease-modifying therapy 8:18
Study shows cannabis spray improves spasticity and quality of life for people living with MS 10:15
MS Confidential is the web series you don't want to miss 11:47
Dr. Helen Tremlett explains what the MS prodrome is and why it's important 14:40
Share this episode 28:20
Download the free RealTalk MS app 28:48
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/202
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Effects of High and Low Efficacy Therapy in Secondary Progressive Multiple Sclerosis https://n.neurology.org/content/early/2021/06/30/WNL.0000000000012354
STUDY: Association of Disease Severity and Socioeconomic Status in Black and White Americans with Multiple Sclerosishttps://n.neurology.org/content/early/2021/06/30/WNL.0000000000012362
STUDY: Sativex Cannabinoid Oromucosal Spray in Patients with Resistant Multiple Sclerosis Spasticity: The Belgian Experiencehttps://pubmed.ncbi.nlm.nih.gov/34157999/
Episode 1 of MS Confidential: Vanityhttps://www.youtube.com/watch?v=thtC81q7LVA
Where to find future episodes of MS Confidential
https://unfixedmedia.com/ms-confidential
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 202
Guest: Dr. Helen Tremlett
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Every two years, the MS International Federation awards the Charcot Award, recognizing lifetime achievement in outstanding research into the understanding and treatment of MS. My special guest is this year's recipient of the Charcot Award, Professor Alan Thompson, who is being honored for what is truly a remarkable body of work.
We'll also share some encouraging news from the FDA about a biomarker for progressive MS clinical trials.
We'll tell you about the outcome of a study that shows high-efficacy disease-modifying therapies lead to less disability over time for people with relapsing-remitting MS.
And we'll give you the details about how you can participate in a clinical trial that's comparing the safety, efficacy, and cost-effectiveness of autologous hematopoietic stem cell therapy (aHSCT) with high-efficacy disease-modifying therapies.
We have a lot to talk about! Are you ready for RealTalk MS??!
What the Charcot Award is all about :22
FDA supports further development of a biomarker for progressive MS clinical trials 2:10
Study shows high-efficacy DMTs lead to less disability over time 5:58
Recruitment underway for clinical trial comparing stem cell therapy to high-efficacy disease-modifying therapies 9:13
This month's Can-Do MS programs help battle fatigue 12:12
My conversation with Professor Alan Thompson 14:39
Share this episode 31:33
Download the free RealTalk MS app 31:53
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Just copy this link & paste it into your text or email: https://realtalkms.com/201
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
FDA Letter of Support to encourage the further use and study of neurofilament light chain as a biomarker for early clinical trials in progressive MS
https://www.fda.gov/media/149608/download
STUDY: Long-Term Disability Trajectories in Relapsing Multiple Sclerosis Patients Treated with Early Intensive or Escalation Treatment Strategies https://journals.sagepub.com/doi/full/10.1177/17562864211019574
Beat-MS Studyhttps://www.beat-ms.org
CanDo MS Program Information and Registration
https://cando-ms.org/programs
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 201
Guest: Professor Alan Thompson
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
We're celebrating the 200th episode of RealTalk MS by sitting down with Cyndi Zagieboylo, the President and CEO of the National Multiple Sclerosis Society, and looking at some of the most vital initiatives ever undertaken by the National MS Society, including the launch of the International Progressive MS Alliance, the MS Society's efforts to support diversity, equity, and inclusion throughout the MS movement and in MS clinical research, and the groundbreaking Pathways to Cures blueprint. Over the span of her 36-year career with the National MS Society, Cyndi had the opportunity to work with the Society's founder, Sylvia Lawry. During our conversation, we look back at the founding of the National MS Society in 1948, Ms. Lawry's founding of the MS International Federation in 1967, and Cyndi shares her insights into what might have been on Ms. Lawry's mind if she were with us today.
We have a lot to talk about! Are you ready for RealTalk MS??!
Welcome to Episode #200! :18
A toast to each of you who have made this possible :58
My conversation with Cyndi Zagieboylo 2:57
Share this episode 31:42
Thanks again! 32:02
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/200
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 200
Guests: Cyndi Zagieboylo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Receiving an MS diagnosis can be frightening. And receiving that diagnosis as a young adult can feel like your whole world just got flipped upside down. When Matoaka Kipp (she/her/hers) received her MS diagnosis at the age of 21, she not only had to come to terms with how that diagnosis would change her life but as a member of the LGBTQ+ community, Matoaka also had to confront some of the systemic inequities of our healthcare system.
Matoaka joins me this week to share her MS journey.
We're also talking about why the U.S. Supreme Court tossed out a lawsuit that threatened access to healthcare for every person living with MS in the United States.
We'll tell you who was just named this year's recipient of the prestigious Charcot Award and you'll learn how this person's work has directly affected your MS diagnosis.
We're sharing the surprising results of a study of cannabis use and cognition among people with MS.
And we'll tell you about a $1 million dollar award that will fund no-cost outdoor adventures (think adaptive skiing, kayaking, etc!) for young adults who are living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society's statement in support of the LGBTQ+ community :22
U.S. Supreme Court Tosses Out ACA Lawsuit (and why that matters to everyone living with MS) 3:26
Winner of the Charcot Award is announced 7:14
Surprising results from a study on cannabis and cognition among people with MS 10:07
If you're living in the U.K. and you use a wheelchair for mobility, here's your chance to be a part of MS research 14:07
First Descents receives $1 million dollars to support no-cost outdoor adventures for young adults living with MS 15:04
Matoaka Kipp shares her MS journey 17:30
Share this episode 40:41
Please join me next week for our 200th episode! 41:03
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/199
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
National MS Society LGBTQ+ Needs Survey
https://ntlms.org/LGBTQSurvey
Matoaka's Greeting Cards
https://www.instagram.com/habibimail
STUDY: Impaired Awareness: Why People with Multiple Sclerosis Continue Using Cannabis Despite Evidence to the Contrary
https://onlinelibrary.wiley.com/doi/10.1002/brb3.2220
University of Birmingham Study Participant Information
https://drive.google.com/file/d/10CW_slePiO4n7HjVeimSuCGgfdEX1y-m/view
First Descents Outdoor Adventures for Young Adults Impacted by MS
https://firstdescents.org/programs/ms-programs/
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 199
Guests: Matoaka Kipp
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
At some point, about 50% of the people living with MS will experience clinical depression. This goes beyond simply feeling sad. Left unchecked, MS-related depression can sometimes lead to tragic consequences.
As it relates to multiple sclerosis, mental health must be de-stigmatized, studied more rigorously, and discussed more often.
Returning to the podcast to talk about managing the mood-related symptoms of MS is Dr. Anthony Feinstein, a Professor of Psychiatry at the University of Toronto and an expert in the neuropsychiatry of multiple sclerosis.
We're also talking about study results that show how your beliefs about your disease-modifying therapy can determine whether you stay on it.
Dr. Brian Sandroff joins me to share the outcome of a Kessler Foundation study that may lead to a whole new way for people living with MS who are experiencing substantial disability to improve cognition and mobility impairment through rehabilitation exercise.
You'll hear about a research team that may have identified a biomarker for MS progression. And we'll tell you why that can have a huge impact on treating progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Perceptions of DMTs can predict MS treatment adherence 2:03
Dr. Brian Sandroff shares the results of Kessler Foundation's robotic exoskeleton-assisted exercise pilot study 7:03
Researchers identify a simple amino sugar as a biomarker for MS progression 17:57
Dr. Anthony Feinstein discusses depression and anxiety in MS 22:30
Share this episode 39:44
Have a minute? Leave a rating & review for the podcast 40:04
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/198
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
STUDY: Beliefs About Medication As Predictors of Medication Adherence In a Prospective Cohort Study Among Persons With Multiple Sclerosis https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-021-02149-0
STUDY: A Pilot Randomized Controlled Trial of Robotic Exoskeleton-Assisted Exercise Rehabilitation in Multiple Sclerosis
https://www.msard-journal.com/article/S22110348(21)00203-0/fulltext
STUDY: Association of a Marker of N-Acetylglucosamine with Progressive Multiple Sclerosis and Neurodegenerationhttps://jamanetwork.com/journals/jamaneurology/fullarticle/2779917
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
Give RealTalk MS a rating and review
http://www.realtalkms.com/review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 198
Guests: Dr. Brian Sandroff, Dr. Anthony Feinstein
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Some people call them flares, some people call them exacerbations, and some people call them MS attacks. But all those terms refer to the very same thing -- an MS relapse. What does a relapse really mean in terms of disease progression? What's the difference between a relapse and a pseudo-relapse? How does pregnancy make you less likely to experience a relapse and then more likely to experience a relapse?
Dr. Michelle Cameron is joining me to answer these questions and to share some advice on how to best avoid an MS relapse. Dr. Cameron is a neurologist and physical therapist, and an associate professor in the Department of Neurology at Oregon Health & Science University.
We're also sharing the details about this Thursday's Pathways to Wellness in MS program being presented by the National MS Society(it's free to register!).
We'll tell you about over $1 million dollars in new progressive MS research grants that were just awarded by the International Progressive MS Alliance.
If you're curious about how well-matched you and your DMT really are, we'll let you know how you can test-drive a new MS Disease-Modifying Therapy Comparison app.
And we're talking about the latest addition to at-home telehealth treatment when it comes to MS rehabilitation.
We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society Pathways to Wellness in MS takes place this Thursday 1:24
International Progressive MS Alliance announces new research awards 2:54
International Progressive MS Alliance global webcast will feature MS experts answering your questions 5:06
Wondering about the right DMT for you? There may be an app for that! 5:46
NYU Langone Health launches at-home transcranial direct current stimulation MS rehab program 7:54
Dr. Michelle Cameron shares what you need to know about MS relapses. 11:02
Share this episode 22:48
Have a minute? Leave a rating & review for the podcast 23:09
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/197
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society's Pathways to Wellness in MS
International Progressive MS Alliance Global Webcast
Disease-Modifying Therapies Comparison Tool
NYU Langone Health At-Home Transcranial Direct Current Stimulation Program
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 197
Guests: Dr. Michelle Cameron
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
The challenge of living with MS often begins with the challenge of getting a timely and accurate diagnosis. There are no symptoms, physical findings, or laboratory tests that can, by themselves, determine if someone has MS, and the most common symptoms of MS can often resemble symptoms of other conditions. All of these variables can sometimes lead to patients getting the wrong diagnosis.
Dr. Andrew Solomon, Associate Professor of Neurological Sciences and Division Chief of Multiple Sclerosis at the University of Vermont Larner College of Medicine, is joining me to discuss diagnosing and misdiagnosing MS.
We'll also fill you in on the details of the upcoming European MS Platform Annual Conference (it's free to register!).
We'll tell you about a cannabis-based treatment that's been shown to improve spasticity without causing weakness in people with MS.
We'll share the results of a study that looked at how a COVID-19 infection affects MS.
You'll hear about newly published research that may have isolated the gene that causes male immune cells to drive more severe MS.
And we'll give you the rundown of this month's Can Do MS programs.
We have a lot to talk about! Are you ready for RealTalk MS??!
European MS Platform Annual Conference 1:38
Cannabis extract improves spasticity without causing weakness 2:44
How COVID-19 may affect MS 4:43
A word about our show notes 6:49
Study shows male immune cells drive more severe MS 8:18
This month's Can Do MS programs 11:38
Dr. Andrew Solomon discusses diagnosing MS and misdiagnosing MS 13:13
Share this episode 25:54
Have a minute? Leave a rating & review for the podcast 26:14
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/196
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
European MS Platform Annual Conference
STUDY: COVID-19 is Associated with New Symptoms of Multiple Sclerosis That are Prevented by Disease-Modifying Therapies
STUDY: Male Sex Chromosomal Complement Exacerbates the Pathogenicity of Th17 Cells in a Chronic Model of Central Nervous System Autoimmunity
Can Do MS Program Information and Registration
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 196
Guests: Dr. Andrew Solomon
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
As the United States begins to move past the pandemic and toward something much closer to life as we once knew it, I've received a lot of questions from members of the RealTalk MS listener community who are concerned about how their disease-modifying therapy may affect the efficacy of the COVID-19 vaccine, whether the authorized vaccines will protect them from variants, and whether they should continue wearing a mask, despite encouraging recommendations from the CDC.
As Chair of the National MS Society's National Medical Advisory Committee, Dr. Nancy Sicotte also leads the MS Society's COVID-19 Vaccine Advisory Group. And Dr. Sicotte is joining me once again to answer your questions and resolve some of the confusion around these important topics.
We have a lot to talk about! Are you ready for RealTalk MS??!
World MS Day is May 30th :25
Dr. Sicotte answers your questions about Vaccines and DMTs, Variants, Masks, and More 3:03
Share this episode 24:04
Have a minute? Leave a rating & review for the podcast 24:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/195
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
FDA Advisory on Antibody Tests
World MS Day
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 195
Guests: Dr. Nancy Sicotte
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When Pierluigi Montovani saw what was available to help his father rehabilitate his MS-related foot drop, he was motivated to invent something better. Pierluigi recruited a couple of friends and their efforts led to a breakthrough solution for foot drop that was declared the winner of the Lyfebulb and Bristol Myers Squibb Addressing Unmet Needs in MS: Innovation Challenge.
Pierluigi joins me as my guest this week to discuss EvoWalk, his award-winning example of innovation in MS rehabilitation.
We'll also share some very unsettling realities about MS treatment that have been revealed in the latest addition to the MS International Federation's Atlas of MS.
We're checking in with an exercise coach and one of the participants in the STEP for MS trial. You'll hear about this participant's remarkable progress and we'll tell you how you can still participate in this study.
We'll tell you about a new Yale University study that's designed to determine whether Ocrevus can prevent the onset of MS in people diagnosed with radiologically isolated syndrome.
And although the oral disease-modifying therapy Ozanimod (Zeposia) has already been approved to treat relapsing-remitting MS in the U.S., Canada, and Europe, we'll update you on the decision not to approve it for use in England and Wales.
We have a lot to talk about! Are you ready for RealTalk MS??!
Atlas of MS, Part 2 Reveals Some Unsettling Truths 2:19
Zeposia fails to win approval by NICE 6:10
The Step for MS Study with Brendon Truax and Bo Roberts 8:15
Yale study will test whether Ocrevus can prevent MS in patients diagnosed with RIS 14:23
Pierluigi Montovani discusses his father's inspiration in developing EvoWalk for rehabilitating MS foot drop 16:49
Share this episode 27:44
Have a minute? Leave a rating & review for the podcast 28:05
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/194
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
Introducing EvoWalk
Atlas of MS
STUDY: Prevention of Clinical Multiple Sclerosis in Individuals with Radiologically Isolated Disease
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 194
Guests: Brendon Truax, Bo Roberts, and Pierluigi Montovani
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
The COVID-19 pandemic has created what experts are calling a mental health crisis of unparalleled proportion. Many people affected by MS have had to add pandemic-related stresses and anxieties to the already existing anxieties that come from living with a chronic illness. And that's a lot to carry around every day.
Joining me to talk about managing your mood and quieting some of the noise in your head is psychologist, psychoanalyst, Certified Multiple Sclerosis Specialist, and MS Partner in Care, Dr. Gayle Lewis.
We're also talking about the initial findings of the COVER-MS study, which is looking at how the COVID-19 vaccines are affecting people living with MS.
We're inviting all MS care partners to participate in a short survey designed to measure their awareness of patient-focused drug development as well as their interest in adding their unique perspective to this work.
We'll tell you about OCTOPUS, a revolutionary progressive MS clinical trial that is designed to be a game-changer when it comes to MS clinical trials.
And we'll share the details and tell you where and how to register for this month's CAN-DO MS programs.
We have a lot to talk about! Are you ready for RealTalk MS??!
Initial findings of the COVER-MS study 1:43
Announcing the Care Partners in Patient-Focused Drug Development Survey 4:28
Introducing OCTOPUS, a revolutionary progressive MS clinical trial 5:57
CAN-DO MS May Programs 8:13
Dr. Gayle Lewis discusses emerging from the trauma of the pandemic 10:00
Share this episode 36:55
Have a minute? Leave a rating & review for the podcast 37:19
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/193
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
Dr. Gayle Lewis MS Teletherapy
STUDY: COVER-MS Initial Findings: Side Effects
Participate in the COVER-MS study
Patient-Focused Drug Development for Care Partners Survey
CAN-DO MS Programs
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
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RealTalk MS Episode 193
Guests: Dr. Gayle Lewis
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century.
In today's episode, we're talking about empowering people living with MS to become full partners in their MS treatment and the importance of good communication between patients and their doctors.
We're also introducing MS in the 21st Century, a resource that has just recently been made available to the MS community in the United States.
My guests are Dr. Mitzi Joi Williams and Carolyn Kaufman. Dr. Williams is a board-certified neurologist and multiple sclerosis expert based in Atlanta, Georgia, with a special interest in shared decision-making and improving standards of care for underserved communities.
Carolyn Kaufman is a holistic health coach based in Miami, Florida, and Carolyn has been living with MS since she was 20 years old.
To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.
In today's special episode of RealTalk MS, Dr. Michael Kornberg is going to give us a glimpse into emerging research and the future of MS treatments. So, if you'd like to peer into the not-too-distant future for a preview of the new MS therapies that will be available to you, this is the conversation you're looking for.
Dr. Kornberg is an Assistant Professor of Neurology at the Johns Hopkins University School of Medicine and, in addition to his clinical work, Dr. Kornberg's lab is focused on identifying novel therapeutic strategies to prevent neurodegeneration and promote remyelination in MS.
During our conversation, we'll try to cover all the therapeutic bases, from predicting MS progression to a whole new class of drugs to treat MS. From stem cell therapy to remyelination.
We have a lot to talk about! Are you ready for RealTalk MS??!
Congrats to the winner of the $100 Amazon gift card! :51
Dr. Michael Kornberg discusses emerging MS research and next-generation MS therapies 2:25
Share this episode 36:20
Have a minute? Leave a rating & review for the podcast 36:40
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Just copy this link & paste it into your text or email: https://realtalkms.com/192
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 192
Guests: Dr. Michael Kornberg
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
With 200 million Americans having already received their COVID-19 vaccination, public health officials are warning that vaccine hesitancy is a growing challenge to our nation's ability to fully bounce back from the pandemic and resume something resembling the life we once knew.
If what you're seeing and hearing about the COVID vaccines on social media or from well-meaning friends and family is making you nervous, my guest, Dr. Dorlan Kimbrough, is joining me to set the record straight.
Dr. Kimbrough is a member of the National MS Society's COVID Vaccine Guidance Task Force and we're talking about vaccine side effects among people living with MS, vaccine interactions with MS disease-modifying therapies, and other information that you should know before you go for your vaccination.
We're also talking about new progressive MS research that's about to be funded by the International Progressive MS Alliance.
We're sharing the good news about a DMT that's just been approved for people living with relapsing-remitting MS in England and Wales.
And we'll share some of the research that was discussed last week at the American Academy of Neurology 2021 Annual Meeting.
We have a lot to talk about! Are you ready for RealTalk MS??!
International Progressive MS Alliance reviews research award applications 2:50
Kesimpta approved for RRMS in England and Wales 3:38
News from the AAN 2021 Annual Meeting 4:32
Dr. Dorlan Kimbrough discusses what you need to know about COVID-19 vaccines and MS 10:36
Share this episode 30:02
Have a minute? Leave a rating & review for the podcast 30:22
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Just copy this link & paste it into your text or email: https://realtalkms.com/191
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
STUDY: Plasma Neurofilament Light Chain and Glial Fibrillary Acidic Protein Levels are Prognostic of Disability Worsening: A Biosignature that Helps Differentiating Active from Non-Active SPMS
STUDY: Sociodemographic and Clinical Characteristics of Patients with Multiple Sclerosis by Race and Ethnicity (NARCRMS Registry)
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 191
Guests: Dr. Dorlan Kimbrough
Tags: MS, MultipleSclerosis, COVID19, COVIDVaccine, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Their website says that Destination Rehab takes an "innovative, out-of-the-box approach to physical therapy." This week, my guests are Sally McAllister and the founder of Destination Rehab, Dr. Carol-Ann Nelson. Sally is 70 years old and living with primary progressive MS. We're talking about how Sally's work with Dr. Nelson produced life-changing results.
We're also talking about the first study that specifically measures the safety of the Pfizer-BioNtech COVID vaccine for people living with MS.
We'll share the results of another study that suggests that some MS disease-modifying therapies affect Black people differently.
We'll tell you about this year's recipient of the Dystel Prize for MS research.
And we'll give you the details about the MS Society of Canada's upcoming MS CONNECT virtual conference.
We have a lot to talk about! Are you ready for RealTalk MS??!
Study provides evidence of how the COVID-19 vaccine affects people living with MS 1:35
Study shows that Black people may react differently to a popular MS disease-modifying therapy 4:29
Dystel Prize for MS research goes to Harvard professor 7:48
MS Society of Canada presents MS CONNECT virtual conference next week 9:08
Sally McAllister and Dr. Carol-Ann Nelson talk about how real-world rehab changed Sally's life 10:33
Share this episode 31:26
Have a minute? Leave a rating & review for the podcast 31:46
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Just copy this link & paste it into your text or email: https://realtalkms.com/190
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society COVID-19 Vaccine Guidance for People Living with MS
Destination Rehab
STUDY: COVID-19 Vaccination in Patients with Multiple Sclerosis: What We Heave Learnt by February 2021
2021 MS CONNECT
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RealTalk MS Episode 190
Guests: Sally McAllister and Dr. Carol-Ann Nelson
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
MS affects almost 3 times as many women as men. Have you ever wondered why? When it comes to investigating sex differences in MS, my guest, Dr. Rhonda Voskuhl, has done more than just think about it. And her recent research may have uncovered an MS treatment for women undergoing menopause.
Dr. Voskuhl is the President-elect of the International Organization for the Study of Sex Differences and the Director of the Multiple Sclerosis Program at UCLA.
We're also talking about the potentially game-changing discovery of 3 new MS subtypes. And they were discovered by a machine!
We'll share the results of a study that analyzed the outcomes of over 1,600 people living with MS in North America who contracted COVID-19.
And we'll tell you about a new report that was issued by 30 patient organizations (including the National MS Society) that details the dangers of cheap, non-compliant health insurance plans that are being sold in the U.S.
If you're looking for tools that will help you stay positive during challenging times, we'll give you the details about the slate of programs that Can Do MS is offering throughout the month of April.
We have a lot to talk about! Are you ready for RealTalk MS??!
Last Call for your chance to win a $100 Amazon gift card :22
Scientists use AI to identify 3 new MS subtypes 3:57
Study provides evidence that people with MS do as well with COVID-19 as the general population 6:51
International Progressive MS Alliance convenes meeting on COVID-19 and progressive MS 8:12
Patient organizations issue report showing the danger of non-compliant sub-standard health insurance coverage 9:02
Can Do MS programs in April focus on ways to stay positive 10:55
Dr. Rhonda Voskuhl discusses recent research that reveals a potential MS treatment for women undergoing menopause 12:45
Share this episode 34:19
It's your last chance to take the RealTalk MS Listener Survey and win a $100 Amazon gift card 34:40
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/189
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (Win a $100 Amazon Gift Card!)
National MS Society COVID-19 Vaccine Guidance for People Living with MS
MStranslate
STUDY: Identifying Multiple Sclerosis Subtypes Using Unsupervised Machine Learning and MRI Data
STUDY: Outcomes and Risk Factors Associated with SARS-COV-2 Infection in a North American Registry of Patients with Multiple Sclerosis
REPORT: Undercovered: How "Insurance-Like" Products Are Leaving Patients Exposed
CAN-DO MS Program Info and Registration
Join the RealTalk MS Facebook Group
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Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 189
Guests: Dr. Rhonda Voskuhl
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MStranslate, RealTalkMS
Privacy Policy
More than half of all the people living with MS will develop problems with cognition. And while experiencing cognitive dysfunction can be challenging and frustrating, these kinds of changes can also be frightening.
Joining me to talk about things you can do to better manage cognitive changes and preserve healthy cognition is neuroscientist and neuropsychologist, Dr. Victoria Leavitt.
We're also talking about the encouraging results from a small clinical trial that tested stem cell therapy to treat progressive MS.
We'll tell you about a person living with secondary progressive MS who will soon be receiving the very first dose of an investigational antibody to treat progressive MS administered via nasal spray.
And we'll tell you about a game-based digital therapy for MS-related anxiety that is awaiting FDA approval.
We'll share news about the new Sanofi-Genzyme website that's been launched to recruit participants with MS for a large clinical trial.
And you'll hear about a novel device designed to improve walking for people with MS that's just been approved by the FDA.
We have a lot to talk about! Are you ready for RealTalk MS??!
Thank you! :27
Positive Results from stem cell clinical trial for progressive MS 3:00
Patient with secondary progressive MS will be first to receive Antibody to treat MS via nasal spray 5:01
MS-related anxiety? There may soon be an app for that! 7:24
New Sanofi-Genzyme website recruiting for clinical trials 8:59
PoNS device to improve walking for people with MS receives FDA approval 10:48
Dr. Victoria Leavitt discusses preserving cognitive function in MS 12:48
Share this episode 29:51
Take the RealTalk MS Listener Survey and win a $100 Amazon Gift Card 30:12
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/188
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (Win a $100 Amazon Gift Card!)
National MS Society COVID-19 Vaccine Guidance for People Living with MS
eSupport Health
BrainStorm Announces Positive Topline Data in Phase 2 Study Evaluating NurOwn as a Treatment for Progressive MS
MyMSTrials.com
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RealTalk MS Episode 188
Guests: Dr. Victoria Leavitt
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
About 80% of the people with relapsing-remitting MS will eventually be diagnosed with secondary progressive MS. At that point, their remissions stop and their MS symptoms continue to worsen. And about 15% of the people diagnosed with MS are diagnosed from the beginning with primary progressive MS. So identifying ways to optimally treat progressive MS is a priority.
Joining me with updates on progressive MS research, treatment, and rehabilitation are Dr. Kathy Zackowski and Dr. Daniel Ontaneda. Dr. Ontaneda is an associate professor of Neurology at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and a staff member at the Cleveland Clinic Neurological Institute's Mellen Center for Multiple Sclerosis. And Dr. Zackowski is the Senior Director of Patient Management, Care and Rehabilitation Research at the National MS Society and a member of the International Progressive MS Alliance Scientific Steering Committee.
We're sharing some startling details about MS care from the European MS Platform's MS Barometer 2020.
We're talking about a study that shows that lifestyle choices like increasing physical activity and choosing not to smoke can have a positive impact on MS fatigue.
And we'll tell you about a new program that empowers people affected by MS to pose the questions that will drive MS research.
We have a lot to talk about! Are you ready for RealTalk MS??!
Details from the European MS Platform's MS Barometer 2020 1:34
The International Progressive MS Alliance issues a call to action on progressive MS rehabilitation with Dr. Kathy Zackowski 4:35
Study shows that lifestyle changes can impact MS fatigue 18:00
Our Own Questions Have Power 19:20
Progressive MS treatment and Research with Dr. Daniel Ontaneda 21:03
Share this episode 38:17
Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 38:38
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/187
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
National MS Society COVID-19 Vaccine Guidance for People Living with MS
MS Barometer 2020
Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance
STUDY: Associations Between Fatigue Impact and Lifestyle Factors in People with Multiple Sclerosis: The Danish MS Hospitals Rehabilitation Study
iConquer MS: Our Questions Have Power
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 187
Guests: Dr. Kathy Zackowski and Dr. Daniel Ontaneda
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, RealTalkMS
Privacy Policy
Living through a lockdown can be challenging, and it's resilience that helps us get through life's challenges and recover from setbacks. And while resilience may have become a new topic of conversation for the world at large, when you're living with the uncertainty of MS, you come to realize that resilience is one of the most important tools in your self-care toolbox.
Joining me to talk about building your resilience is Dr. Meghan Beier. Dr. Beier is a Rehabilitation Neuropsychologist and an Assistant Professor of Physical Medicine at the Johns Hopkins University School of Medicine, where she specializes in cognitive rehabilitation and neuropsychological assessment and intervention.
We'll also share the National MS Society's Vaccine Advisory Group's updated vaccine guidance for people living with MS.
We'll tell you about the new oral disease-modifying therapy that just received FDA approval.
You'll hear about the newly-announced partnership between the MS Society and Park Health, and we'll explain how this partnership will deliver personalized one-to-one health coaching to help people live better with MS.
And we'll tell you about the entrepreneur who won the Lyfebulb Bristol Myers Squibb MS Innovation Challenge by setting out to resolve one of his father's most bothersome MS symptoms.
We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society's Vaccine Advisory Group announces updated guidance for people living with MS 2:03
Here's your chance to participate in COVID-19 & MS research 4:32
Ponesimod receives FDA approval 5:29
National MS Society announces partnership with Park Health 6:24
Evolution Devices wins Lyfebulb Bristol Myers Squibb Innovation Challenge 8:18
My interview with Dr. Meghan Beier 11:19
Share this episode 25:35
Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 25:54
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/186
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
National MS Society COVID-19 Vaccine Guidance for People Living with MS
COVID-19 Studies Recruiting People with MS
Evolution Devices
CAN-DO MS Program Information and Registration
Join the WalkMS RealTalk MS RealWalkers Team *Join the RealTalk MS Facebook Group*
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 186
Guests: Dr. Meghan Beier
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, Resilience, COVIDVaccine, Lyfebulb, RealTalkMS
Privacy Policy
We're less than one week away from the National MS Society's Public Policy Conference. This year, the Public Policy Conference is virtual, which means that you have an opportunity to attend and learn how you can advocate for change on important policy issues affecting the MS community.
Joining me to talk about the Public Policy Conference and the issues that MS Activists will be discussing with our congressional representatives in the days following the conference is the Executive Vice-President of Advocacy and Healthcare Access for the National MS Society, Bari Talente.
This is Episode #185 of RealTalk MS, which means our 200th episode will be here before you know it. We're inviting you to help us figure out how to celebrate that milestone!
Developing breakthrough treatments for progressive MS? We'll share the info about a video replay of an International Progressive MS Alliance global webcast that you won't want to miss.
We're also talking with a biopharmaceutical company that's conducting clinical trials to investigate a solid gold nanomedicine treatment for remyelination.
And we'll tell you about a study that shows how an adaptive video game that you can play on your tablet provides a reliable measure of cognitive function for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
Episode 200 of RealTalk MS is coming...what should we do??? :22
Thank you, Dave Bexfield and ActiveMSers! 1:14
You can support the RealTalk MS RealWalkers WalkMS Team 3:41
The Progressive MS Alliance Webcast Replay 6:45
Nanotechnology to solve remyelination? 8:20
My interview with Clene Nanomedicine's Chief Medical Officer, Dr. Robert Glanzman 9:45
Can video game technology make MS cognitive assessment easier, faster, and more accessible? 23:44
My interview with the National MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente 26:46
Share this episode 38:11
Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 38:32
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/185
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
Register for the 2021 National MS Society Public Policy Conference
ActiveMSers
Webcast Video Replay: Accelerating Breakthrough Treatments in Progressive MS
STUDY: Application of an Adaptive, Digital, Game-Based Approach for Cognitive Assessment in Multiple Sclerosis: Observational Study Support the WalkMS RealTalk MS RealWalkers Team *Join the RealTalk MS Facebook Group*
Download the RealTalk MS App for iOS
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RealTalk MS Episode 185
Guests: Dr. Robert Glanzman, Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, PPC2021, Nanotechnology, RealTalkMS
Privacy Policy
It's MS Awareness Week and we're talking with two remarkable women, Sarah Quezada and Tracey Cooper-Harris, who are living their lives out loud, refusing to let MS define them.
We're also inviting you to participate in the first-ever RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!).
We'll share research announced at the recent ACTRIMS Forum that explores whether we may be headed toward Cognitive-Dominant MS.
We're also talking about how the National MS Society is teaming up with the Lupus Research Alliance and the Juvenile Diabetes Research Foundation to focus research on autoimmune disease.
And we'll tell you about a study that examined factors other than physical disability that impact the quality of life for people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
MS Awareness Week and the power of sharing our stories :21
Take our RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 3:51
MS Society's COVID-19 Vaccine Guidance Group is reviewing the data from the Johnson & Johnson vaccine clinical trial 5:09
Are we headed for Cognitive-Dominant MS? 5:56
National MS Society is teaming up with the Lupus Research Alliance and the JDRF to fund autoimmune research 7:53
The impact of fatigue on quality of life 9:18
My interview with Sarah Quezada and Tracey Cooper-Harris 13:25
Share this episode 39:52
Take the RealTalk MS Listener Survey 40:12
WalkMS 2021 is here! 40:39
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/184
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
RealTalk MS ACTRIMS Forum Bonus Episode
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
STUDY: Cerebral/Cognitive-Predominant MS Decoding Immune-Mediated Diseases
STUDY: Quality of Life in Multiple Sclerosis: The Differential Impact of Motor and Cognitive Fatigue WalkMS 2021 Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
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Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 184
Guests: Sarah Quezada and Tracey Cooper-Harris
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
When it comes to accessing care and even the disease course itself, MS is not an equal-opportunity disease. We're talking with Dr. Mitzi Joi Williams about the disparities that affect members of minority populations who are living with MS.
Dr. Williams is a Board-Certified Neurologist and Multiple Sclerosis Specialist who is passionate about educating and empowering people affected by MS to understand the disease process and the goals of treatment. And Dr. Williams is an expert in understanding MS in underserved and minority populations.
We're also inviting you to participate in the first-ever RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!).
We'll tell you about a call by the International Progressive MS Alliance to improve clinical trials.
We'll share research announced at last week's ACTRIMS Forum that suggests there is an alarming amount of opioid use among people living with MS.
We're also talking about a newly launched digital music therapy program that you can access from home.
And we're sharing this month's CAN-DO MS programs that are all focused on building resilience.
We have a lot to talk about! Are you ready for RealTalk MS??!
Don't miss the ACTRIMS bonus episode! :22
Take our RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 1:17
International Progressive MS Alliance calls for changes in clinical trials 3:23
Opioid use among people living with MS 6:27
Digital music therapy for people living with MS 8:48
CAN-DO MS programs are focusing on resilience in March 10:23
My interview with Dr. Mitzi Joi Williams 12:02
Share this episode 29:50
Take the RealTalk MS Listener Survey 30:12
WalkMS 2021 is here! 30:37
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/183
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
RealTalk MS ACTRIMS Forum Bonus Episode
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
Facing the Urgency of Therapies for Progressive MS -- A Progressive MS Alliance Proposal STUDY: One in Five (20%) People with Multiple Sclerosis Use Prescription Opioids MS in Harmony CAN-DO MS program info & registration WalkMS 2021
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 183
Guests: Dr. Mitzi Joi Williams
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Welcome to a bonus ACTRIMS Forum 2021 episode of RealTalk MS. ACTRIMS is an acronym that stands for the Americas Committee for Treatment and Research in Multiple Sclerosis and this year, the ACTRIMS Forum is a virtual meeting, bringing together over 1700 MS research scientists and clinicians to share the latest MS research news and insights. We'll take you inside the proceedings at ACTRIMS and share highlights from some of the most compelling presentations. And I'm sitting down to talk with this year's recipient of the Barancik Prize, Dr. Dwight Bergles. The Barancik Prize is awarded for innovation in MS research and Dr. Bergles is being recognized for his pioneering remyelination research. We have a lot to talk about! Are you ready for RealTalk MS??!
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
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National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
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RealTalk MS ACTRIMS 2021 Bonus Episode
Guests: Dr. Dwight Bergles
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, ACTRIMS, RealTalkMS
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If you spend more than a minute on social media it can seem like there's more misinformation about the COVID-19 vaccines than there is legitimate, fact-based information. And I've heard it said that if you repeat a lie enough, it becomes the truth. So we're doing some major COVID-19 vaccine myth-busting with Dr. Scott Newsome. Dr. Newsome is an Associate Professor of Neurology and Director of Neurosciences Consultation and Infusion Center at Johns Hopkins Medicine. He also serves as the Co-Director of the Multiple Sclerosis Experimental Therapeutics Program at Johns Hopkins, and President of the Board of Governors of the Consortium of MS Centers. Dr. Newsome is also a member of the expert Task Force convened by the National MS Society to develop a COVID-19 vaccine guidance for people living with MS. We're also inviting you to participate in the RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!). And we're giving you a heads-up to watch for a bonus episode of RealTalk MS later this week when we cover the ACTRIMS FORUM 2021. We have a lot to talk about! Are you ready for RealTalk MS??!
The RealTalk MS Listener Survey :22
Why we have to talk about the COVID-19 Vaccine Again! 1:07
Bonus Episode coming later this week -- ACTRIMS 2021 3:21
Dr. Scott Newsome debunks myths & rumors about the COVID-19 vaccines 4:05
Share this episode 32:25
Take the RealTalk MS Listener Survey 32:45
WalkMS 2021 is here! 33:12
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Just copy this link & paste it into your text or email: https://realtalkms.com/182
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)
Give RealTalk MS a Rating and Review
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
WalkMS 2021
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 182
Guests: Dr. Scott Newsome
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID19, RealTalkMS
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A fulfilling sexual relationship with your partner can have a positive impact on your physical and mental health in a variety of ways. But studies suggest that about 80% of the people living with MS are affected by some kind of sexual dysfunction. We're devoting this entire episode of RealTalk MS to talking about sex and MS with my guest, Dr. Linda Mona. Dr. Mona is a licensed clinical psychologist and founder of Inclusivity Clinical Consulting Services. She's been recognized by the American Psychological Association, the Academy of Spinal Cord Injury Professions, Paralyzed Veterans of America, and the Society for the Scientific Study of Sexuality for her work focusing on people living with disabilities. We have a lot to talk about! Are you ready for RealTalk MS??!
Sex and MS with Dr. Linda Mona :18
Share this episode 28:42
Leave a rating and review for RealTalk MS 29:03
WalkMS 2021 is here! 30:14
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
WalkMS 2021
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
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RealTalk MS Episode 181
Guests: Dr. Linda Mona
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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The National MS Society has updated their COVID-19 vaccine guidance for people living with MS, providing detailed recommendations for timing your disease-modifying therapy with the two COVID-19 vaccines that are approved in the U.S. If you're on a disease-modifying therapy and you've been wondering about your DMT and the COVID-19 vaccines, this episode is for you. My guest this week is Dr. Jaime Imitola, the Director of the Division of Multiple Sclerosis and Translational Neuroimmunology at UConn Health, a noted expert in his field, and a member of the task force that the MS Society convened to create the COVID-19 vaccine guidance. We're talking about the new updates to the vaccine guidance, answering some of the questions that you've sent my way, and we'll get into how this task force went about creating this very important guidance for people living with MS. We're also talking about the FDA approval of intramuscular injections for Plegridy (and how that came about!) We'll tell you about BRAINTEASER, a European Union initiative that will leverage artificial intelligence in an effort to treat people living with ALS and MS by providing predictive care instead of reactive care. And we'll explain how the newly announced Gladstone-UCSF Center for Neurovascular Brain Immunology is opening a new front in the war on MS. We have a lot to talk about! Are you ready for RealTalk MS??!
Facts are facts! :22
National MS Society issues guidance for timing MS medications and COVID-19 mRNA vaccines 4:35
The latest reason to download the RealTalk MS app 5:26
FDA approves Intramuscular injection for Plegridy 6:15
BRAINTEASER launches 7:24
The Gladstone-UCSF Center for Neurovascular Brain Immunology 9:55
My interview with Dr. Jaime Imitola 12:26
Share this episode 28:12
WalkMS 2021 is here! 28:32
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Just copy this link & paste it into your text or email: https://realtalkms.com/180
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society COVID-19 Vaccine Guidance for People Living with MS
National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines
WalkMS 2021
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 180
Guests: Dr. Jaime Imitola
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID19, RealTalkMS
Privacy Policy
Research has shown that, for people living with MS, regular exercise and physical activity can improve their quality of life while helping to manage MS symptoms. But research has also shown that people living with MS tend to be less active than people in the general population. In response, the National MS Society convened a group of experts to develop fact-based guidance for promoting exercise and lifestyle physical activity for all people with MS, regardless of their ability level. Joining me to talk about these exercise recommendations along with some of the real benefits that exercise produces for people living with MS is Dr. Nora Fritz, a board-certified Neurologic Physical Therapist and an Assistant Professor in the Physical Therapy Program in the Department of Health Care Sciences and Department of Neurology at Wayne State University School of Medicine, where she’s also the Director of the Neuroimaging and Neurorehabilitation Laboratory. Judy Boon was diagnosed with MS in 2007. Judy is a true MS Warrior who has fully integrated fitness activities and exercise into her everyday lifestyle. Judy is also joining me to talk about how exercise has impacted her MS journey.
We're also talking about a University of Washington study that measured the willingness to receive a COVID-19 vaccine among people living with MS. We'll tell you about a study from Italy that measured the long-term benefits of autologous hematopoietic stem cell transplantation (aHSCT). And we're talking about an important survey that measured the perspectives and preferences regarding MS research among racial and ethnic groups. We have a lot to talk about! Are you ready for RealTalk MS??!
Study measures COVID-19 vaccine willingness among people living with MS 2:23
Study shows long-term benefits of analogous Hematopoietic Stem Cell Transplantation 6:32
Study measures perspectives and preferences for MS research among racial and ethnic groups 9:15
Study shows a cancer treatment may protect the blood-brain barrier and reduce neuroinflammation 9:05
My interview with Dr. Nora Fritz 12:45
My interview with Judy Boone 25:14
Share this episode 34:47
Walk MS 2021 is coming! 35:07
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Just copy this link & paste it into your text or email: https://realtalkms.com/179
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society COVID-19 Vaccine Guidance for People Living with MS
What You Need to Know About Coronavirus (COVID-19)
RealTalk MS Episode 177: Dr. Nancy Sicotte Answers Your Questions about the COVID-19 Vaccine and MS
STUDY: Willingness to Obtain COVID-19 Vaccination in Adults with Multiple Sclerosis in the United States
STUDY: Long-Term Clinical Outcomes of Hematopoietic Stem Cell Transplantation in Multiple Sclerosis
Autologous Hematopoietic Stem Cell Transplant in Multiple Sclerosis: Recommendations of the National Multiple Sclerosis Society
STUDY: Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups
iConquerMS
Walk MS 2021
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 179
Guests: Dr. Nora Fritz and Judy Boone
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Paleo...Wahls...Swank...Mediterranean...intermittent fasting. Is there such a thing as "The MS Diet"? Joining me to offer an expert opinion about diet and MS is Dr. Ilana Katz Sand, the Associate Director of the Corinne Goldsmith Dickinson Center for MS and Co-Director of the Center’s Wellness Program. Dr. Katz Sand's recent and current research studies include a clinical trial of dietary interventions for MS and exploring the role of the gut microbiome in MS. Dr. Katz Sand is also a member of the National MS Society's Wellness Research Work Group where, over the past year, she's led the work of the Nutrition Wellness Subgroup. We're also looking at how a recent announcement about a new MS vaccine caught fire on social media. And we'll tell you what that news was really all about!
We'll tell you about a study in Sweden that showed a cancer treatment may protect the blood-brain barrier and reduce neuroinflammation in MS. And we're talking about a Columbia University study that shows why, if you're living with MS, "ya gotta have friends"! We have a lot to talk about! Are you ready for RealTalk MS??!
Thanks for your feedback! :22
And thank you for this very nice (and totally unexpected) surprise! 1:22
Did you hear about the new MS vaccine? 3:31
Study shows a cancer treatment may protect the blood-brain barrier and reduce neuroinflammation 9:05
Study shows social support is linked to mental health, quality of life, and motor function in people with MS 11:29
My interview with Dr. Ilana Katz Sand 14:23
Share this episode 31:32
Donate to the National MS Society COVID-19 Response Fund 31:52
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/178
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society COVID-19 Vaccine Guidance for People Living with MS
What You Need to Know About Coronavirus (COVID-19)
Meet the MS Society's 2020 Inspiration Award Winners STUDY: A Noninflammatory mRNA Vaccine for Treatment of Experimental Autoimmune Encephalomyelitis STUDY: Blocking PDGF-CC Signaling Ameliorates Multiple Sclerosis-Like Neuroinflammation by Inhibiting Disruption of the Blood-Brain Barrier STUDY: Social Support is Linked to Mental Health, Quality of Life, and Motor Function in Multiple Sclerosis Friends, Written by Buzzy Linhart and Performed by Bette Midler National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group
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RealTalk MS Episode 178
Guests: Dr. Ilana Katz Sand
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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As Chair of the National MS Society's National Medical Advisory Committee, Dr. Nancy Sicotte led the expert task force that the MS Society convened to develop the COVID-19 vaccine guidance for people living with MS. Dr. Sicotte is returning to RealTalk MS to answer your questions about the vaccine and MS. Dr. Sicotte is a Professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles, where she's also the Director of the Multiple Sclerosis and Neuroimmunology Program. Diane Kramer was diagnosed with MS in 2010. As a healthcare worker, Diane has already received the COVID-19 vaccine. Diane is also joining me to share her experience with the vaccine. We have a lot to talk about! Are you ready for RealTalk MS??!
Dr. Nancy Sicotte answers your questions about the MS Society's COVID-19 vaccine guidance for people living with MS 1:47
Diane Kramer shares her experience with the COVID-19 vaccine 19:51
Share this episode 27:24
Donate to the National MS Society COVID-19 Response Fund 27:44
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/177
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
COVID-19 Vaccine Guidance for People Living with MS
National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
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RealTalk MS Episode 177
Guests: Dr. Nancy Sicotte and Diane Kramer
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, COVID19, CovidVaccine, RealTalkMS
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The National MS Society has issued its initial COVID-19 vaccine guidance for people living with MS and we're covering every detail of this anxiously awaited and important announcement. We're also taking a look back with Dr. Barbara Giesser at some of the things that made life better for people living with MS in 2020. We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society releases COVID-19 vaccine guidance for people living with MS 1:44
Some of the things that made life better for people living with MS in 2020 with Dr. Barbara Giesser 13:46
Share this episode 26:19
Donate to the National MS Society COVID-19 Response Fund 26:39
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/176
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
National MS Society COVID-19 Vaccine Guidance for People Living with MS
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
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RealTalk MS Episode 176
Guests: Dr. Barbara Giesser
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID19, RealTalkMS
Privacy Policy
Research creates the future for people affected by MS. And clinical research can't happen without your participation. Joining me as my guest is Sara Loud, the CEO of iConquerMS, the people-powered-research network that puts you at the center of MS research. We're also celebrating a whole list of MS advocacy wins that will translate into making life better for people living with MS in the United States. We'll tell you about a study that clearly demonstrates why it's essential to start disease-modifying therapy once someone receives an MS diagnosis. We're sharing the results of a study about MS-related pain. And we'll tell you about a new set of Amazon Alexa features that make being a long-distance care partner easier. We have a lot to talk about! Are you ready for RealTalk MS??!
Celebrating MS advocacy wins :26
Effects of disease-modifying therapy on disability among people living with relapsing-remitting MS over 15 years 4:33
Study reveals new information about MS pain 6:01
Amazon Alexa has new features especially for care partners 9:11
My interview with Sara Loud 11:58
Share this episode 28:39
Donate to the National MS Society COVID-19 Response Fund 28:59
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Just copy this link & paste it into your text or email: https://realtalkms.com/175
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society: Advocate for Change STUDY: Effect of Disease-Modifying Therapy on Disability in Multiple Sclerosis Over 15 Years STUDY: Characterizing Chronic Pain Phenotypes in Multiple Sclerosis: A Nationwide Study RealTalk MS Episode 170: Special MS Pain Episode For More Information About iConquerMS: Website: iConquerMS.org
Sara Loud's Email: sloud@acceleratedcure.org National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group
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RealTalk MS Episode 175
Guests: Sara Loud
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, iConquerMS, RealTalkMS
Privacy Policy
In this episode of RealTalk MS, we're re-visiting my conversation with Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society, about some of the most interesting research announcements made during the MSVirtual2020 conference.
This is one of my favorite conversations of the entire year, and you've made it this year's most downloaded and listened to RealTalk MS episode.
We have a lot to talk about! Are you ready for RealTalk MS??!
Happy New Year! :23
My interview with Dr. Bruce Bebo :39
Share this episode 27:04
Have you downloaded the FREE RealTalk MS app? 27:24
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/174
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 174
Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, COVID19, MSVirtual2020, RealTalkMS
Privacy Policy
It's safe to say that this year, the biggest gift of the holiday season has been the arrival of not one, but two COVID-19 vaccines. Still, while the COVID-19 vaccines have created a tremendous amount of hope, they've also created an equal number of questions among people who are living with MS. So the National MS Society has convened a group of experts to provide guidance for people living with MS when it comes to making decisions about the safety, efficacy, and the timing of COVID-19 vaccines as they relate to certain MS disease-modifying therapies. As the Chair of the MS Society’s National Medical Advisory Committee, my guest, Dr. Nancy Sicotte, is leading the effort to create this very important guidance. Dr. Sicotte is a Professor and Chair of the Department of Neurology at Cedars-Sinai Medical Center in Los Angeles, where she's also the Director of the Multiple Sclerosis and Neuroimmunology Program. We'll also talking about the FDA's approval to shorten the time required for an Ocrevus infusion. We'll tell you about new study results that show Mayzent may improve cognitive processing speed among people with progressive MS. And if you're living with progressive MS, we'll tell you about an important clinical trial that you may be eligible to participate in. We have a lot to talk about! Are you ready for RealTalk MS??!
Happy Holidays! :24
Shortened infusion time for Ocrevus 2:10
Mayzent may improve thinking skills among people with progressive MS 3:30
Investigators are recruiting people with progressive MS for a clinical trial 5:21
My interview with Dr. Nancy Sicotte 8:48
Share this episode 23:57
Donate to the National MS Society COVID-19 Response Fund 24:18
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Just copy this link & paste it into your text or email: https://realtalkms.com/173
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
STUDY: Shorter Infusion Time of Ocrelizumab: Results from the Randomized, Double-Blind ENSEMBLE PLUS Study in Patients with Relapsing-Remitting Multiple Sclerosis STUDY: Siponimod and Cognition in Secondary Progressive Multiple Sclerosis: EXPAND Secondary Analyses *For More Information About the Tolebrutinib Clinical Trial:
Phone: (800) 733-1610
Email: US@sanofi.com National MS Society COVID-19 Response Fund Join the RealTalk MS Fac*ebook Group
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RealTalk MS Episode 173
Guests: Dr. Nancy Sicotte
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, COVID19, Vaccine, RealTalkMS
Privacy Policy
Feeling some of the stress and anxiety that often come with the holiday season? Who could blame you? If the holidays aren't enough, this year, we're also going through what's looking like the worst part of the COVID-19 pandemic. Stress and anxiety aren't guaranteed, but they aren't exactly unexpected, either. My guest this week, Megan Weigel, is here to share some techniques and strategies that we can use to de-stress during the holidays. Megan is a nurse practitioner specializing in neurological care. As a Multiple Sclerosis Certified Nurse and a board-certified Advanced Practice Holistic Nurse, Megan brings a unique integrative medicine and holistic nursing perspective to her practice. We'll also share more encouraging news about autologous hematopoietic stem cell clinical trials. We'll tell you about the newly released National MS Society guidance on telemedicine. (And if you've downloaded the free RealTalk MS app from the Apple App Store or Google Play Store, you'll find your copy of that guidance under the "Bonus Content" tab!) We're also talking about the very positive pilot study of a new computer-based cognitive rehab program. And we'll tell you about the launch of a first of its kind study that will help scientists understand how MS affects memory. If you're using CBD edibles to help manage some of your MS symptoms, you'll want to hear what happened when 40 brands of edibles were analyzed by an independent laboratory. We'll tell you how you can participate in a clinical trial that's going to evaluate treatments for MS fatigue (You can participate from home...and you can even get paid!) And if there are times when you just want to talk with someone who really gets it when it comes to living with MS, we'll tell you about MS Friends. We have a lot to talk about! Are you ready for RealTalk MS??!
More encouraging news about autologous hematopoietic stem cell transplantation 1:46
National MS Society issues telemedicine guidance 5:09
Computerized cognitive rehab pilot study shows promise 6:34
Kessler study will explore memory loss in MS 8:34
CBD edibles...how much CBD is that??? 9:34
Your chance to participate from home in a clinical trial about MS fatigue 11:29
Just feel like talking? You can call MS Friends 13:34
My interview with Megan Weigel, DPN, ARNP-C 16:04
Share this episode 31:49
Donate to the National MS Society COVID-19 Response Fund 32:09
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Just copy this link & paste it into your text or email: https://realtalkms.com/172
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
First Coast Integrative Medicine STUDY: Selective Cognitive Dysfunction and Physical Disability Improvement After Autologous Hematopoietic Stem Cell Transplantation in Highly Active Multiple Sclerosis RealTalk MS Episode 166 National MS Society Guidance: Tips for Successful Telemedicine for Those Living with MS STUDY: Enhancing Cognitive Rehabilitation in Multiple Sclerosis with a Disease-Specific Tool Leafreport CBD Edibles Market Report COMBO-MS MS Fatigue Study Eligibility Survey MS Friends: 1-866-MSFRIEND (1-866-673-7436) National MS Society COVID-19 Response Fund
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RealTalk MS Episode 172
Guests: Megan Weigel, DNP, ARNP-c
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, MSFriends, CBD, Stemcells, RealTalkMS
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Every day, 12 more Canadians are diagnosed with multiple sclerosis. Facing one of the highest MS rates in the world, spread across a geographically large country, the MS Society of Canada is the only national voluntary organization in Canada that supports cutting-edge MS research while providing services and support to more than 90,000 people living with MS. Joining me as my guest is Dr. Pamela Valentine, who is not only the president & CEO of the MS Society of Canada but also a multi-award winning neuroscientist. During our conversation, we'll be talking about COVID-19, progressive MS, and some of the most pressing issues facing the MS community today. We'll also share some encouraging stem cell clinical trial results. (And we're including a quick review of what these different types of stem cells are all about!) We'll tell you about a new immune cell discovery that helps explain the importance of the connection between the gut and the central nervous system. We're also talking about a new study from the Mayo Clinic that shows how a woman's pregnancies and the onset of menopause may influence the onset of progressive MS. And we'll tell you where to watch a 2020 MS Research Update from MS Research Australia. This video was produced especially for people affected by MS, and it's definitely worth watching! We have a lot to talk about! Are you ready for RealTalk MS??!
Beneficial effects of mesenchymal stem cell transplantation in active progressive MS 1:44
Gut Immune Cells May Play Key Role in MS 5:38
Pregnancies, Later Menopause Tied to Progressive MS Onset Age 10:44
$100M Program Aims to Improve Diversity in Clinical Trials 12:53
MS Research Australia: Progress in MS Research Update 2020 16:15
My interview with Dr. Pamela Valentine 17:59
Share this episode 31:55
Donate to the National MS Society COVID-19 Response Fund 32:15
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Just copy this link & paste it into your text or email: https://realtalkms.com/171
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
MS Society of Canada
STUDY: Beneficial Effects of Autologous Mesenchymal Stem Cell Transplantation in Active Progressive Multiple Sclerosis STUDY: Gut Microbiota-Specific IgA-B Cells Traffic to the CNS in Active Multiple Sclerosis STUDY: Reproductive History and Progressive Multiple Sclerosis Risk in Women Email for info about Bristol Myers Squibb Foundation Diversity in Clinical Trials Career Development Program: DCTCDPinfo@nmfonline.org *VIDEO: MS Research Australia:* Progress in MS Research Update 2020 National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 171
Guests: Dr. Pamela Valentine
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, MSSocietyCanada, MSResearchAust, Stemcells, RealTalkMS
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MS-related pain is one of those invisible symptoms that can have a profound impact on your quality of life. So we're devoting this entire episode of RealTalk MS to taking a deep dive into assessing and managing MS-related pain with my guests, Dr. Dawn M. Ehde and Dr. Heidi Maloni. Both of my guests are experts at assessing, treating, and managing MS-related pain, but each approaches pain from a slightly different perspective. Dr. Ehde is a clinical psychologist and professor of rehabilitation medicine at the University of Washington, where she has an endowed professorship in Multiple Sclerosis Research. Dr. Ehde and her group at UW have published the results of several studies on MS-related pain in peer-reviewed medical journals. Dr. Heidi Maloni is a nurse practitioner and the National Clinical Nursing Director for the Multiple Sclerosis Center of Excellence East at the Veterans Affairs Medical Center. Dr. Maloni heads up research programs to further the understanding of MS and its impact on Veterans while also aiding in the development of treatments to manage the disease and its symptoms. We have a lot to talk about! Are you ready for RealTalk MS??!
The different ways you might experience MS-Related Pain :23
My interview with Dr. Dawn Ehde & Dr. Heidi Maloni 3:41
Share this episode 27:07
Donate to the National MS Society COVID-19 Response Fund 27:27
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Just copy this link & paste it into your text or email: https://realtalkms.com/170
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society: Pain Resources
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 170
Guests: Dr. Dawn Ehde and Dr. Heidi Maloni
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, RealTalkMS
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Joining me this week is Brett Drummond, a scientist in Australia who stepped away from his lab to develop an online resource designed to bridge the gap between the MS patient community and the MS research community. The result of his efforts is MSTranslate. We're talking about this excellent curated MS information resource, and Brett even shares some insights into the MS research that he finds particularly exciting. We're also talking about the research team that used human stem cells to create myelin-producing cells in a lab dish in just 3 weeks. We'll tell you what a University of Washington Rehabilitation Medicine research team learned when they surveyed people living with MS about their level of distress during the first surge of the COVID-19 pandemic. Wouldn't it be convenient if MS progression could be measured by analyzing how you type on your smartphone? We'll tell you about the study that asked that question. We'll also share new discoveries from the Avonex clinical trial that show MS-related brain atrophy can be predicted 10 years before it occurs. And as we approach Thanksgiving in the U.S., we're sharing the things that we're thankful for this year. We have a lot to talk about! Are you ready for RealTalk MS??!
Being thankful in 2020 :22
Myelin-producing cells created in a lab dish in 3 weeks 5:43
UW Rehabilitation Medicine surveyed people living with MS on their feelings of distress & risk perception in the early phase of the COVID-19 pandemic 6:57
Measuring MS progression by typing on your smartphone 9:06
Study shows neurofilament light chain level at the first MS episode predicts future brain atrophy 10:43
My interview with Brett Drummond 14:54
Share this episode 37:13
Donate to the National MS Society COVID-19 Response Fund 37:34
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/169
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
MSTranslate
STUDY: Generation of Oligodendrocytes and Establishment of an All-Human Myelinating Platform for Human Pluripotent Stem Cells
STUDY: Distress and Risk Perception in People Living With Multiple Sclerosis During the Early Phase of the COVID-19 Pandemic
STUDY: Early-Warning Signals for Disease Activity in Patients Diagnosed with Multiple Sclerosis Based on Keystroke Dynamics
STUDY: Association of Serum Neurofilament Light Levels with Long-Term Brain Atrophy in Patients With a First Multiple Sclerosis Episode
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 169
Guests: Brett Drummond
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, MSTranslate, RealTalkMS
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Today, remyelination holds real promise as a strategy for restoring lost function and slowing or even stopping MS progression. This week, we're taking a deep dive into the current state of remyelination research. Joining me are Dr. Jeffrey Cohen, the Hazel Prior Hostetler Professor of Neurology at the Cleveland Clinic and the director of the Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research, and Dr. Ian Duncan, a neuroscientist, and Professor of Neurology at the University of Wisconsin-Madison and the recipient of the 2020 Dystel Prize for MS Research. We're also talking about the publication of the Atlas of MS, the most extensive global MS prevalence study to date. And we're even including a copy of the published study as bonus content in the RealTalk MS app! We're sharing an excellent explanation of comorbidities in MS by Dr. Ruth Ann Marrie. And we're sharing some news about Dr. Marrie, as well. The European MS Platform's annual conference begins Thursday. This year, the theme is Understanding Progressive MS. We'll tell you how and where to register for this free virtual event. And we'll remind you where you can register for next week's virtual 2020 MS-CONNECT conference, hosted by the MS Society of Canada. We have a lot to talk about! Are you ready for RealTalk MS??!
Veterans with MS are eligible to join the PVA :22
The largest MS prevalence study to date has been published. And it's yours in the RealTalk MS app! 3:26
Dr. Ruth Ann Marie on comorbidities in MS 4:29
European MS Platform Annual Conference: Understanding Progressive MS begins Thursday 5:56
MS Society of Canada 2020 MS-CONNECT Conference begins next Monday 6:56
Dr. Jeffrey Cohen talks about remyelination 9:13
Dr. Ian Duncan talks about the science behind remyelination 21:48
Share this episode 31:31
Donate to the National MS Society COVID-19 Response Fund 31:52
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Just copy this link & paste it into your text or email: https://realtalkms.com/168
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Paralyzed Veterans Of America
VIDEO: Dr. Ruth Ann Marrie on comorbidities in MS Register for the European MS Platform Annual Conference: Understanding Progressive Multiple Sclerosis
Register for the MS Society of Canada's 2020 MS-CONNECT Conference
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 168
Guests: Dr. Jeffrey Cohen, Dr. Ian Duncan
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, EMSPVirtual2020, MSConnect, RealTalkMS
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November 11 is Veterans Day in the United States, giving us an opportunity to honor the men and women who have served in America's armed forces. More than 70,000 U.S. veterans are living with MS, and joining me on the podcast is Karla Clay, an Air Force veteran, and a National Veterans Wheelchair Games multiple medal winner. We're talking about the life-changing turn that Karla's MS journey ended up taking.
As of today, the fate of the Affordable Care Act and the legal protections for people with pre-existing conditions are in the hands of the Supreme Court. So we're also talking about The 100 Days Agenda: A Patient-First Blueprint. This document is the result of a collaboration between the National MS Society and 33 other patient organizations and it provides specific steps that the President and other elected officials can take to protect access to adequate, affordable insurance coverage for people with pre-existing conditions. We'll tell you about a study that identifies a potential new risk associated with disease-modifying therapies for people living with MS who are over the age of 45. And the month of November is loaded with outstanding webinars and conferences featuring some of the leading MS experts in the world. The good news is that you can virtually attend all of these online events at no charge, from the comfort of your own home. We're sharing all the details and we'll tell you where to register for each one! We have a lot to talk about! Are you ready for RealTalk MS??!
As of today, the legal protections for people with pre-existing conditions is in the hands of the U.S. Supreme Court :22
National MS Society and 33 other patient organizations publish The 100 Days Agenda: A Patient-First Blueprint 2:25
Study identifies a potential new DMT risk for people living with MS who are over the age of 45 3:34
November is loaded with outstanding webinars and conferences that you can attend virtually...for FREE! 5:04
International Progressive MS Alliance Global Webcast: Speeding Life-Changing Treatments for Progressive MS 5:25
National Alliance for Caregiving and the Rosalynn Carter Institute for Caregiving webinar: Flattening the Caregiver Crisis Curve 5:57
European MS Platform Annual Conference: Understanding Progressive MS 7:52
MS Society of Canada 2020 MS-CONNECT Conference 8:48
My Interview with Karla Clay, Capt USAF (Ret) 9:41
Share this episode 31:09
Donate to the National MS Society COVID-19 Response Fund 31:28
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/167
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National Veterans Wheelchair Games
Paralyzed Veterans Of America
U.S. Department of Veterans Affairs Multiple Sclerosis Centers Of Excellence
The 100 Days Agenda: A Patient-First Blueprint
STUDY: Age-Related Adverse Events of Disease-Modifying Treatments for Multiple Sclerosis: A Meta-Regression
Register for the International Progressive MS Alliance Global Webcast: Speeding Life-Changing Treatments for Progressive MS
Register for Flattening the Caregiver Crisis Curve
Register for the European MS Platform Annual Conference: Understanding Progressive Multiple Sclerosis
Register for the MS Society of Canada's 2020 MS-CONNECT Conference
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 167
Guests: Karla Clay, Capt USAF (Ret)
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, VeteransDay, EMSPVirtual2020, MSConnect, Caregiving, RealTalkMS
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Fatigue is considered to be the most common MS symptom and also one of the most disabling because fatigue can interfere with every aspect of someone's life -- at home, at work, in their relationships -- in every way, fatigue can have a profound impact on your quality of life. We're talking about how to best manage MS-related fatigue with two experts on the subject, Dr. Bardia Nourbakhsh, and Dr. Kathy Zackowski. Remembering Karen Jackson We're also remembering Karen Jackson, an MS activist, tireless advocate, a supporter of people-powered research, friend to this podcast, and a special person who we were lucky to know. We're also talking about the National MS Society's first recommendation for stem cell therapy as a treatment for MS. This recommendation comes with some important caveats and we'll cover them all. We'll share some very disturbing survey results that reveal widespread mistreatment of MS patients by their family caregivers. And we'll tell you what we're doing about it. If you're an adult living with MS, we'll share the details of an opportunity for you to participate in a clinical trial from the comfort of your own home, as researchers study the health benefits of tele-exercise. And you'll meet a true difference-maker in the MS community when you meet Cristina Antelo, who submitted the winning bid in a fundraising auction for the National MS Society. And the item that Cristina bid on was.....this interview! We have a lot to talk about! Are you ready for RealTalk MS??!
Remembering Karen Jackson :22
National MS Society issues a recommendation for stem cell therapy 4:05
NARCOMS survey uncovers widespread mistreatment of MS patients by their caregivers 8:34
Adults with MS wanted for tele-exercise clinical trial 13:08
My Interview with Dr. Bardia Nourbakhsh & Dr. Kathy Zackowski 14:44
My Interview with Cristina Antelo 31:23
Share this episode 44:21
Donate to the National MS Society COVID-19 Response Fund 44:44
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/166
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Autologous Hematopoietic Stem Cell Transplant in Multiple Sclerosis: Recommendations of the National Multiple Sclerosis Society
SURVEY: Abuse and Neglect of People with Multiple Sclerosis: A Survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)
To Participate in the Tele-Health Study Contact Amy Bialek at Burke Neurological Institute
Phone: (914) 597-2347
Email: amb3003@med.cornell.edu
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
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Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
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RealTalk MS Episode 166
Guests: Dr. Bardia Nourbakhsh, Dr. Kathy Zackowski, and Cristina Antelo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, RealTalkMS
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Almost everything that we've learned about multiple sclerosis is the result of people with MS choosing to participate in clinical research. When it comes to MS and most every other chronic illness, clinical research is the common denominator of all medical progress. This week, we're breaking down the details of MS clinical research with my guests, Dr. Sandi Cassard, a research associate in the Neurology department at Johns Hopkins School of Medicine, and Diane Kramer, who has participated in more than 20 research studies since being diagnosed with MS in 2010. After analyzing COVID-19 MS patient registries and studies from countries around the world, the MS International Federation has issued updated COVID-19 guidance for people living with MS. We'll tell you about it -- and if you've downloaded the RealTalk MS app from the Apple App Store or Google Play, you'll receive your own copy of this detailed guidance under the Bonus Content tab! We also have some final words before election day to share with our listeners in the U.S. And they're not even our words! We'll share the results of a study that may offer a clue as to why African-Americans with MS are likely to experience more relapses, greater disability, and often require mobility assistance earlier in their disease course when compared to Caucasians with MS. You'll also hear about an MRI study that shows Hispanics with MS are at a higher risk for developing more aggressive forms of MS at an earlier age when compared to Caucasians with MS. And you'll meet a true difference-maker when you meet Nightingale Award recipient and founder of MS Bright Spots of Hope, Michelle Keating. We have a lot to talk about! Are you ready for RealTalk MS??!
Have you checked out MSTranslate? 1:03
Healthcare is on the ballot! Have you voted yet??? 3:42
MSIF issues updated COVID-19 guidance for people living with MS 9:38
Researchers discover 2 gene variants that may help explain why African-Americans with MS often have a more severe disease course than Caucasians with MS 10:58
A study shows that Hispanics with MS are at a higher risk of developing more aggressive forms of MS at an earlier age. 12:44
My Interview with MS researcher Dr. Sandi Cassard and Diane Kramer 14:57
My Interview with Nightingale Award recipient and founder of MS Bright Spots of Hope Michelle Keating 24:08
Share this episode 35:52
Donate to the National MS Society COVID-19 Response Fund 36:12
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Just copy this link & paste it into your text or email: https://realtalkms.com/165
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
MSTranslate
MSIF Global COVID-19 Advisory for People with MS
STUDY: Two Genetic Variants Explain the Association of European Ancestry with Multiple Sclerosis Risk in African-Americans
UCSF Multiple Sclerosis Genetics Project
STUDY: Brain MRI Finds Hispanic Patients Develop More Aggressive MS
MS Bright Spots of Hope
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 165
Guests: Dr. Sandi Cassard, Diane Kramer, and Michelle Keating
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, RealTalkMS
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MS doesn't only affect individuals. It affects families. And that's probably most clear when we're talking about pediatric MS. The National MS Society estimates that there are about 5,000 diagnosed cases of pediatric MS in the United States and less than 10,000 cases worldwide, but those numbers become far less important when your child is one of those diagnosed cases. We're taking a deep dive into pediatric MS with Hannah Schnitzler, who lives with pediatric MS, Hannah's mom, Melissa Fisher, and pediatric MS expert Dr. Brenda Banwell. We're also talking about study results that show a simple sugar that's available over the counter is effective in preventing myelin degeneration in the mouse model of MS. And we'll tell you how a research team at the University of Chicago went about designing a novel MS therapy that's been demonstrated to promote myelin repair and even stop MS from developing in the mouse model of MS. You'll hear about the first oral disease-modifying therapy that's been approved to treat active secondary progressive MS in England, Wales, and Scotland. And we'll tell you how you can be a part of future MS research projects. We have a lot to talk about! Are you ready for RealTalk MS??!
Study shows an over-the-counter simple sugar promotes myelin repair in mouse model of MS 1:31
Researchers design a new MS therapy that reduces MS symptoms and even prevents MS from developing in mouse model of MS 3:15
Mayzent approved for treating secondary progressive MS in England, Wales, and Scotland 5:28
Register to participate in future research at the University of Washington MS Rehabilitation & Wellness Center 6:38
Online survey for parents of a child living with pediatric MS 8:02
My Interview with pediatric MS patient Hannah Schnitzler and her mom 9:22
My Interview with pediatric MS expert Dr. Brenda Banwell 21:57
Share this episode 42:00
Donate to the National MS Society COVID-19 Response Fund 42:21
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Just copy this link & paste it into your text or email: https://realtalkms.com/164
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
STUDY: N-acetylglucosamine Drives Myelination By Triggering Oligodendrocyte Precursor Cell Differentiation
STUDY: Prolonged Residence of an Albumin-IL-4 Fusion Protein in Secondary Lymphoid Organs Ameliorates Experimental Autoimmune Encephalomyelitis
SURVEY: University of Washington Multiple Sclerosis Rehabilitation & Wellness Center Research Participant Survey
SURVEY: Parents of a Child with Pediatric MS (English)
SURVEY: Parents of a Child with Pediatric MS (Spanish)
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
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RealTalk MS Episode 164
Guests: Hannah Schnitzler, Melissa Fisher & Dr. Brenda Banwell
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, PediatricMS, RealTalkMS
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The ECTRIMS (European Committee for Treatment & Research in MS) meeting is the largest MS research conference in the world. This year, of course, the ECTRIMS conference was virtual, and so was my conversation with Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society. Join us in this special episode of RealTalk MS as we take a deep dive into the research breakthroughs that will lead to treatments designed to stop MS progression, restore lost function, and end MS forever.
We have a lot to talk about! Are you ready for RealTalk MS??!
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/163
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society COVID-19 Response Fund
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RealTalk MS Episode 163
Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSVirtual2020, RealTalkMS
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We're in the midst of the fall MS conference season, and while all the conferences are virtual, there's still lots of news to share. This week, we're talking with EJ Levy, the Founder and President of MS Hope for a Cure, about Big October 2020. We're also talking about MS rehabilitation science with Dr. Kathy Zackowski, the Senior Director of Patient Management, Care, & Rehabilitation Research at the National Multiple Sclerosis Society. Our wide-ranging conversation includes updates from the 10th International Symposium on Gait & Balance in MS, rehabilitation for people living with progressive MS, and evidence-based best practices when it comes to the physical wellness, nutritional wellness, and emotional wellness of people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??!
It's MS research conference season! :22
Big October starts today :45
My interview with EJ Levy, the Founder & President of MS Hope for a Cure 2:13
Participate today in the National MS Society's Economic Impact Survey (and why it's so important!) 16:57
10th International Symposium on Gait & Balance in MS 18:48
My Interview with Dr. Kathy Zackowski 20:18
Share this episode 36:59
Donate to the National MS Society COVID-19 Response Fund 37:20
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Just copy this link & paste it into your text or email: https://realtalkms.com/162
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Big October 2020
Health Behaviors, Wellness, and Multiple Sclerosis Amid COVID-19
National MS Society Survey: The Economic Impact of MS
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 162
Guests: EJ Levy & Dr. Kathy Zackowski
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, BigOctober2020, RealTalkMS
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A lot of us may have to think back to a time before the pandemic to remember what it felt like to get a good night's sleep. But if you're someone living with MS, you might have to think back even further. Research tells us that more than half the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. And that can lead to additional health issues along with an overall decline in quality of life and wellbeing. My guest is Dr. Katie Siengsukon, a physical therapist, Associate Professor, and Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science. We're talking about the importance of sleep to your overall health, how sleep problems affect MS, and the steps you can take if you're experiencing sleep problems. We're also talking about how the things that people affected by MS care most about really boil down to public policy decisions, making MS advocacy a critical element of this podcast. And while we're on the subject of advocacy, we're sharing our rant about a recently announced "healthcare plan" for the United States. You'll hear about what I'm calling a wellness roadmap for people living with MS. We'll give you the details of a newly-announced collaboration designed to produce a diagnostic test for a protein called neurofilament light chain -- and why that will be a game-changer for people living with MS. And we'll tell you about a clinical trial that will be starting soon for a therapy designed to reduce or eliminate MS disease activity by re-educating your immune system. We have a lot to talk about! Are you ready for RealTalk MS??!
Why it's always about MS advocacy 1:25
My rant about the "healthcare plan" that was just announced 5:00
Maintaining your physical, nutritional, and emotional wellness amid COVID-19 11:57
Here comes a diagnostic test for neurofilament light chain...and why it will be a game-changer for people living with MS 16:57
"Re-educating" your immune system. A Phase 1 clinical trial for ANK-700 begins soon 19:44
My Interview with Dr. Katie Siengsukon 22:17
Share this episode 34:44
Donate to the National MS Society COVID-19 Response Fund 35:07
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Vote.gov
Health Behaviors, Wellness, and Multiple Sclerosis Amid COVID-19
RealTalk MS Episode 142: New Guidelines for Exercise & Physical Activity from the National MS Society
RealTalk MS Episode 159: Building Resilience with Dr. Dawn Ehde
Anokion: What is Immune Tolerance?
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 161
Guests: Dr. Katie Siengsukon
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, Sleep, Vote, RealTalkMS
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Of all the people living with MS, you might assume that people living with progressive MS have experienced the highest levels of anxiety and depression related to the threat of COVID-19. A research team found themselves at the right place at the right time -- conducting a different progressive MS study. They quickly pivoted to investigate the emotional impact of the COVID-19 pandemic on people living with progressive MS. My guest is Dr. Anthony Feinstein, a professor of psychiatry at the University of Toronto and a neuropsychiatrist. He is also the principal investigator of the CogEx study, and he's sharing the newly published results of his team's work. We're also talking about the importance of your vote in the upcoming U.S. election, and we'll help you check your voter registration and even register to vote. The National MS Society's Ambassadors Ball is happening on September 30. This year it's virtual and it's free. We'll tell you how you can attend. You'll hear the details of a study that revealed some sobering truths about the financial toxicity of MS. And we'll let you know how you can participate in the MS Society's survey of the economic impact of MS. We'll also give you a heads-up about how the slowdown in U.S. mail delivery may impact the delivery of your MS disease-modifying therapies. And we're talking about a study from Australia that demonstrates how engaging with credible health resources (Um...hello!) often leads to adopting a healthy lifestyle. We have a lot to talk about! Are you ready for RealTalk MS??!
Check out RealTalk MS on Amazon Music! :22
MSVirtual2020 -- there's more to come 1:17
Advocacy begins by casting your vote 3:49
Join me at the National MS Society's Ambassadors Ball 6:34
Measuring the financial toxicity of MS 8:43
You can participate in the National MS Society's survey of the economic impact of MS 10:36
Mail delivery delays = disease-modifying therapy delays 12:01
Survey shows that people who engage with health resources adopt a healthy lifestyle 13:30
My Interview with Dr. Anthony Feinstein 16:03
Share this episode 22:21
Donate to the National MS Society COVID-19 Response Fund 22:42
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/160
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
The Emotional Impact of the COVID-19 Pandemic on Individuals with Progressive Multiple Sclerosis
Vote.gov
National MS Society's Ambassadors Ball
STUDY: Patient-Reported Financial Toxicity in Multiple Sclerosis: Predictors and Association with Care Non-Adherence
National MS Society Survey: The Economic Impact of MS
I'm a Veteran Who Gets My Medicines Through the Mail
STUDY: Greater Engagement with Health Information is Associated with Adoption and Maintenance of Healthy Lifestyle Behaviours in People with MS
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 160
Guests: Dr. Anthony Feinstein
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, AmbassadorsBall, Vote, RealTalkMS
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This past weekend, 8,000 MS research scientists and clinicians gathered virtually for the joint meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis and the European Committee for Treatment and Research in Multiple Sclerosis. Known as ECTRIMS, this year's conference was appropriately re-branded as MSVirtual2020. We're talking about great presentations on the MS prodrome (and we'll explain what that is and why it's important), when it might be time to discontinue MS disease-modifying therapies, some encouraging progressive MS clinical trial results, the new number for global MS prevalence, and more! We have a lot to talk about. Welcome to MSVirtual2020!
The MS Prodrome :56
When is it appropriate to discontinue disease-modifying therapy in MS? 4:18
Study shows Masitinib slows disability progression in progressive MS 6:49
Multiple Sclerosis International Federation announces the Atlas of MS, with Clare Walton 9:08
Study shows disease-modifying therapy may delay disability progression and time until people with primary progressive MS need a wheelchair 20:55
Study analyzes benefits of Wahls Diet & Swank Diet 22:47
Atara BioTherapeutics shares initial data from its ATA-188 cell therapy clinical trial, with Dr. AJ Joshi 24:07
Share this episode 40:17
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ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Bonus Episode:
Guests: Clare Walton, Dr. AJ Joshi
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSVirtual2020, RealTalkMS
Privacy Policy
You can't control the weather, but you can learn to dance in the rain. And developing resilience teaches you how to dance in the rain. My guest is Dr. Dawn Ehde, a clinical psychologist and professor of rehabilitation medicine at University of Washington Medicine. Dr. Ehde is an expert in understanding resilience, and she's joining us to explain why having resilience is central to improving the well-being of people affected by MS, and how to go about building your resilience -- even in the midst of a global pandemic. We're also talking about Bafiertam, a lower-cost, FDA-approved bioequivalent to Tecfidera. We'll share the results of a study of more than 5,000 people who were newly diagnosed with MS -- and not prescribed a disease-modifying therapy for two years following their diagnosis. We'll also explain why that's just wrong! We'll talk to Suzi Claflin, the academic lead for Understanding Multiple Sclerosis, a free comprehensive 6-week online course that's open for registration right now. And we'll remind you about where you can register for next week's Black MS Experience Summit. We have a lot to talk about! Are you ready for RealTalk MS??!
We're celebrating 3 amazing years! :22
The joint ACTRIMS-ECTRIMS meeting took place last weekend and that means a bonus episode of RealTalk MS is coming 2:38
Bafiertam is now available in the United States 4:44
Study shows that 2/3 of people newly diagnosed with MS in the U.S. are not prescribed any disease-modifying therapy for 2 years following their diagnosis 5:43
Understanding Multiple Sclerosis, a free online course, is open for registration. My interview with Suzi Claflin 8:44
The Black MS Experience Summit takes place next week 21:51
My Interview with Dr. Dawn Ehde 23:43
Share this episode 40:32
Donate to the National MS Society COVID-19 Response Fund 40:52
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/159
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Bafiertam
STUDY: A Novel In-Home Digital Treatment to Improve Processing Speed in People with Multiple Sclerosis: A Pilot Study
STUDY: Treatment Patterns and Comorbid Burden of Patients Newly Diagnosed with Multiple Sclerosis in the United States
"Understanding Multiple Sclerosis" Online Course Registration
National MS Society Black MS Experience Summit
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 159
Guests: Dr. Dawn Ehde
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, UWMedicine, RealTalkMS
Privacy Policy
Disease-modifying therapies are the cornerstone of any effective MS treatment plan. But with more than 20 approved prescription medications available today, the choices can seem overwhelming. People living with MS have questions -- Do you start out with a safe but less effective medication, or do you hit MS hard with a high-efficacy drug that may carry more risks? When is the right time to consider switching medications, and how do you have that conversation with your neurologist? Do things like other health conditions affect which disease-modifying therapy you're on? And what about aging? My guest is Dr. Scott Newsome, an Associate Professor of Neurology, and Director of Neurosciences Consultation and Infusion Center at Johns Hopkins Medicine. Dr. Newsome also serves as the Co-Director of the Multiple Sclerosis Experimental Therapeutics Program at Johns Hopkins. And I'm devoting this entire episode of RealTalk MS to taking a deep-dive into disease-modifying therapies with Dr. Newsome. We'll also give you the details about two major events taking place this week -- the MSVirtual2020 conference and the Keep Moving Forward benefit celebrating the MS Movement. We have a lot to talk about! Are you ready for RealTalk MS??!
ECTRIMS + ACTRIMS = MSVirtual2020 :24
Don't miss Keep Moving Forward 1:08
My Interview with Dr. Scott Newsome 1:38
Share this episode 33:06
Leave a rating & review 33:26
Please Support the National MS Society COVID-19 Response Fund 34:45
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: realtalkms.com/158
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 158
Hosted By: Jon Strum
Guests: Dr. Scott Newsome
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Tecfidera, Ocrevus, Kesimpta, Copaxone, Gilenya, RealTalkMS
Privacy Policy
One of the very few bright spots to emerge during the COVID-19 pandemic is the overall effectiveness and efficiency of telemedicine. And although people living with MS and their doctors have largely hailed telemedicine as a success, there are significant obstacles to overcome before it can become a permanent part of our healthcare system. My guest is Mei Wa Kwong, the Executive Director of the Center for Connected Health Policy, and we're talking about the things that need to happen to ensure that telemedicine remains a viable means of healthcare delivery. We're also talking about a study that demonstrates that playing a video game can improve cognitive function for people with MS. We'll tell you about the research team that has identified the specific areas in the brain where the neurological changes triggered by fatigue actually occur, and why that's a good thing for people living with MS. Over 1,000 people living with MS completed the global vsMS survey. We'll share the key results with you. We'll also give you the details about a small MRI study that shows one way that the brains of African-Americans with MS are affected differently than the brains of Caucasians with MS. And we'll remind you about where you can register for the upcoming National MS Society's Black MS Experience Summit. And we're inviting you to Keep Moving Forward, a virtual benefit to celebrate the MS Movement. You won't want to miss this! We have a lot to talk about! Are you ready for RealTalk MS??!
A study shows that a video game can improve cognitive function for people with MS 2:25
Researchers identify areas of the brain that are affected by fatigue 5:09
Results of the global vsMS survey remind us of all the ways that MS interrupts lives 7:04
MRI study shows one way that MS affects the brains of African-Americans differently than Caucasians 9:30
National MS Society to convene the Black MS Experience Summit 10:50
You're invited to Keep Moving Forward, a virtual benefit to celebrate the MS Movement 11:56
My Interview with Mei Wa Kwong 13:31
Share this episode 23:48
Leave a rating & review 24:09
Please Support the National MS Society COVID-19 Response Fund 24:51
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/157
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
The Center for Connected Health Policy
STUDY: A Novel In-Home Digital Treatment to Improve Processing Speed in People with Multiple Sclerosis: A Pilot Study
STUDY: Neural Mechanisms Underlying the Effects of Physical Fatigue on Effort-Based Choice
Effects of Multiple Sclerosis on Daily Activities, Emotional Well-being, and Relationships: The Global vsMS Survey
STUDY: African Americans Experience Disproportionate Neurodegenerative Changes in the Medulla and Upper Cervical Spinal Cord in Early Multiple Sclerosis
National MS Society Black MS Experience Summit
Keep Moving Forward: A Benefit to Celebrate the MS Movement
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 157
Guests: Ms. Mei Wa Kwong
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Telehealth, vsMS, RealTalkMS
Privacy Policy
Whether you call it brain fog, cog-fog, or you don't happen to have a name for it, cognitive dysfunction affects more than half of all the people with MS. Joining me once again is Dr. Meghan Beier, a Rehabilitation Neuropsychologist and Assistant Professor of Physical Medicine at the Johns Hopkins University School of Medicine. Dr. Beier specializes in cognitive rehabilitation and neuropsychological assessment and intervention and she's back to answer more of our questions about managing the cognitive issues typically associated with MS. We're also talking about Kesimpta (ofatumumab), the high-efficacy b-cell disease-modifying therapy that just received FDA approval. We'll tell you about the case study of a patient who lost their vaccination immunity to the Varicella-Zoster virus (causes chickenpox & shingles) after receiving their first Ocrevus infusion. We'll give you the details about the generic for Tecfidera that's going to be available in just a few weeks. And we'll tell you why the U.S. Department of Justice is suing Teva, the manufacturer of Copaxone. We'll share all the details and let you know where to register for the National MS Society's Black MS Experience Summit. And we'll tell you how a research team from Facebook (yup -- you read that right!) and New York University is hoping to speed up MRI exams. We have a lot to talk about! Are you ready for RealTalk MS??!
We're trending! :22
FDA approves ofatumumab (Kesimpta) for treating relapsing-remitting MS and active secondary-progressive MS 3:53
Patient loses vaccination immunity for Varicella-Zoster virus after Ocrevus infusion 5:44
Generic for Tecfidera will be available in September 8:25
U.S. Department of Justice sues Coaxone manufacturer, Teva 9:18
National MS Society to convene the Black MS Experience Summit 12:24
Facebook & New York University research team develop artificial intelligence technology that will speed up MRI exams 13:26
My Interview with Dr. Meghan Beier 15:48
Share this episode 29:38
Leave a rating & review 29:58
Please Support the National MS Society COVID-19 Response Fund 30:22
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/156
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Varicella-Zoster Immunity Loss in Multiple Sclerosis Patient Treated with Ocrelizumab
National MS Society Black MS Experience Summit
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 156
Hosted By: Jon Strum
Guests: Dr. Meghan Beier
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Tecfidera, Ocrevus, Kesimpta, Ofatumumab, RealTalkMS
Privacy Policy
Being a caregiver can be stressful in the best of circumstances. And life certainly doesn't get any easier or less burdensome for a family caregiver during a global pandemic. Research shows that COVID-19 is adding to the long list of things that caregivers worry about, adding a whole new layer of stress and anxiety to the situations they face every day. My guest this week is MaryAnne Sterling. MaryAnne is an expert on the challenges of family caregiving. And we're talking about ways that MS caregivers can offset stress and avoid burnout by incorporating self-care into their daily routine. We're also talking about a UTSW research team that's identified a new target for minimizing inflammation in the central nervous system. We're looking at some alarming results from a study that shows 1 in 5 MS patients fail to stay on their oral disease-modifying therapy. And we're sharing the details of a new at-home UTI test kit. We don't want you to miss A&W's Burgers to Beat MS Day this Thursday, so we'll tell you how you can participate -- even if you're nowhere near an A&W! And we'll share some of the alarming findings from a report on the impact of the COVID-19 pandemic on family caregivers. We have a lot to talk about! Are you ready for RealTalk MS??!
Reelin' in a new treatment for Multiple Sclerosis 2:32
Study finds 1 in 5 MS patients don't stay on their oral DMT 5:50
At-Home UTI Test Kit launching in the U.K. 8:15
Thursday is Burgers to Beat MS Day! 10:18
Survey shows that COVID-19 has increased the pressure on caregivers 12:44
My Interview with MaryAnne Sterling 16:43
Share this episode 34:10
Please leave a rating & review 34:29
Please Support the National MS Society COVID-19 Response Fund 34:52
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/155
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
STUDY: Reelin Depletion Protects Against Autoimmune Encephalomyelitis By Decreasing Vascular Adhesion of Leukocytes
STUDY: Real-World Adherence to, and Persistence With, Once- and Twice-Daily Oral Disease-Modifying Drugs in Patients with Multiple Sclerosis: A Systematic Review and Meta-Analysis
Burgers to Beat MS
Caregiving and COVID-19 Report
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 155
Hosted By: Jon Strum
Guests: MaryAnne Sterling
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSSocietyCA, Reelin, Caregiving, Caregiver RealTalkMS
Privacy Policy
One of the things that people affected by MS seem to worry about every year is the flu vaccine. And the question is always the same -- is it safe for someone with MS to get a flu shot? This year, that question and its accompanying anxiety are compounded by the COVID-19 pandemic. Is it safe for someone with MS to get a flu vaccination during the pandemic? Is it safe for someone with MS to get a COVID-19 vaccination when one becomes available? And what about the impact of MS disease-modifying therapies on the effectiveness of any vaccination? My guest is Dr. John Ciotti, a board-certified neurologist and clinical fellow at Washington University in St. Louis, Missouri. Dr. Ciotti is with us to answer those important questions. We're talking about flu shots and other vaccinations, and we're even talking about how a COVID-19 vaccine -- which doesn't exist today -- is likely going to affect people with MS who are on disease-modifying therapies. This is a conversation you don't want to miss because the perfect antidote to worrying is getting your hands on good, credible information. We're also talking about the very positive outcomes of two clinical trials comparing ofatumumab to Aubagio. It's likely that next month, ofatumumab (Arzerra) is going to receive FDA approval for treating MS, so these clinical trial results are something you'll want to know about. We'll share the results of a study that should give you the most important reason yet to include exercise as part of your regular routine and we'll point you toward the new exercise resources that have been created especially for people living with MS. The National MS Society conducted a survey to measure how the COVID-19 pandemic was affecting people living with MS. We'll share some of the highlights from the survey and we'll even remind you where to find the resources that were requested most by survey respondents. And we'll tell you about the very first study to measure the incidence of MS in China. We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society survey measured the impact of the COVID-19 pandemic on people living with MS 1:54
Clinical trial data shows ofatumumab outperforms Aubagio 4:08
Research shows that exercise preserves key areas of the brain among people with MS 6:53
Research team is first to report the incidence of MS in China 10:00
My Interview with Dr. John Ciotti 12:55
Share this episode 28:25
Please leave a rating & review 28:48
DUNK MS is happening Saturday! 29:01
Please Support the National MS Society COVID-19 Response Fund 29:40
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/154
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Effects of MS Disease-Modifying Therapies On Responses to Vaccinations: A Review
RealTalk MS Episode #148: Updated guidance on COVID-19 and each of the available disease-modifying therapies
STUDY: Ofatumumab vs Teriflunomide in Multiple Sclerosis
STUDY: The Importance of Physical Activity to Preserve Hippocampal Volume in People with Multiple Sclerosis: A Structural MRI Study
National MS Society Recommendations for Exercise & Physical Activity For ALL People with MS
VIDEO: Stretching Tips for MS
VIDEO: Aerobic Exercise Tips for MS
VIDEO: Breathing Exercise Tips for MS
STUDY: Incidence of Multiple Sclerosis in China: A Nationwide Hospital-Based Study
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 154
Hosted By: Jon Strum
Guests: Dr. John Ciotti
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Vaccinations, COVID-19, RealTalkMS
Privacy Policy
MS patients experience better treatment outcomes when they actively participate in their own care. And that requires high health literacy. One of my guests is health literacy expert Dr. Kalina Sanders and we're talking about how being an informed patient can have a significant impact on the healthcare you receive.
A well-rounded MS treatment plan will include wellness practices like making smart food choices and adding exercise to your routine. But making changes to our health behaviors is challenging for everyone -- and maybe more challenging if you're already trying to manage a chronic illness like MS. My second guest is wellness coach Kate Costello and we're talking about how changing your health behaviors can be a lot easier when you have someone supporting you every step of the way.
We're also talking about the new guidelines for diagnosing and treating MS in Canada. We'll tell you about a 10-year study that shows that when motor skills decline, walking takes the first hit. Find out where to apply for the CAN-DO MS two-day *Take Charge* program for young adults and their support partners. And we'll tell you how (*and why!*) to share your voice about MS advocacy issues. We have a *lot* to talk about! Are you ready for RealTalk MS??!
Canadian MS Working Group issues new MS diagnosis & treatment guidelines 2:14
When motor skills decline, walking takes the first hit 4:14
The importance of health literacy with Dr. Kalina Sanders 6:33
CAN-DO MS announces two-day Take Charge program for young adults living with MS and their support partners 17:10
Add your voice to the National MS Society's public policy survey 19:16
My Interview with wellness coach Kate Costello 20:55
Share this episode 32:40
Leave a rating & review for RealTalk MS 32:59
Please Support the National MS Society COVID-19 Response Fund 33:15
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/153
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Kate Costello at Wildcrafted Wellness
Treatment Optimization in Multiple Sclerosis: Canadian MS Working Group Recommendations
STUDY: Ten Year Disease Progression in Multiple Sclerosis: Walking Declines More Rapidly than Arm and Hand Functioning
CAN-DO MS Take Charge Program for Young Adults
National MS Society Public Policy Survey
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 153
Hosted By: Jon Strum
Guests: Dr. Kalina Sanders, Kate Costello
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Cognitive decline and depression are two of the more common invisible symptoms of multiple sclerosis, impacting at least half of all the people living with MS. My guest is Dr. Meghan Beier, an Assistant Professor of Physical Medicine at the Johns Hopkins University School of Medicine, and a Rehabilitation Neuropsychologist. Dr. Beier specializes in cognitive rehabilitation and neuropsychological assessment and intervention, and she's going to share some specific strategies that you can use to best manage MS-related cognitive problems and depression. We're also talking about the newly announced $16 million dollar investment from the National MS Society that will support 50 new MS research initiatives. We'll tell you about a small pilot study that suggests that ketamine may be effective in treating MS fatigue. And if you're contemplating using a CBD product to help manage your MS, you'll want to hear what the FDA discovered when they checked the labels on 147 different CBD products. We're even sharing a new, super-easy way for you to add your rating and review of RealTalk MS (and we'd love it if you would!). We have a lot to talk about! Are you ready for RealTalk MS??!
Announcing the easiest way ever to leave a rating and review for RealTalk MS :29
The National MS Society just invested $16 million in new MS research 3:14
Study shows that ketamine may be an effective treatment for MS fatigue 5:14
The FDA checked the labels of 147 CBD products 7:37
My Interview with Dr. Meghan Beier 13:31
Share this episode 30:57
Please Support the National MS Society COVID-19 Response Fund 31:16
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/152
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating and Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society's New MS Research Investments
STUDY: Pilot Randomized Active-Placebo-Controlled Trial of Low-Dose Ketamine for the Treatment of Multiple Sclerosis-Related Fatigue
Report to the U.S. House Committee on Appropriations and the U.S. Senate Committee on Appropriations: Sampling Study of the Current Cannabidiol Marketplace to Determine the Extent That Products are Mislabeled or Adulterated
Contact an MS Navigator:
On The Web By Phone: (800) 344-4867
By Email: contactusnmss@nmss.org
National MS Society COVID-19 Response Fund
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 152
Hosted By: Jon Strum
Guests: Dr. Meghan Beier
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Pain and fatigue are two of the most common and challenging symptoms of MS. These are the symptoms that can stop you from fully engaging in your life at work, at home, with friends, or family. My guest is Dr. Heidi Maloni. Dr. Maloni is a nurse practitioner and the National Clinical Nursing Director for the Multiple Sclerosis Center of Excellence East at the Veterans Affairs Medical Center in Washington, DC. And Dr. Maloni is an expert on treating pain and fatigue in MS. Dr. Maloni will share some best practices for managing MS-related pain, we'll talk about some specific medications that can help manage MS-related pain, and we'll also get into the effectiveness of cannabis-based products for managing pain. And when we talk about fatigue with Dr. Maloni, we'll talk about how to get your friends and family to stop telling you that you're probably just tired, and a nap will fix everything. We're also talking about why access to affordable healthcare isn't shouldn't be a partisan political issue and what gets lost in the conversation when it is. If you happen to be an African-American or Hispanic MS patient and you'd like to have a voice in the design of an important MS research study, we'll tell you how you can be a part of that study's Patient Advisory Group. It's an opportunity for the patient perspective to be part of the planning for this study. And it's an opportunity for you to be paid for your participation in that planning. We'll also tell you about Sidecar, a dramatic short film from SHIFT-MS that illustrates the physical and emotional burden that accompanies MS progression. And if you're an MS caregiver who would like to contribute to MS research, or you know someone who is, we'll tell you about an online survey just for you. We have a lot to talk about! Are you ready for RealTalk MS??!
Your access to healthcare shouldn't be a partisan issue, right? 2:25
Join the Patient Advisory Group for the CHIMES study 8:32
DUNK MS is going virtual and raising funds for MS research 10:24
SHIFT-MS debuts Sidecar, their latest short film 20:03
Are you an MS caregiver? There's an online survey for you 20:59
My Interview with Dr. Heidi Maloni 22:19
Share this episode 42:06
Please Support the National MS Society COVID-19 Response Fund 42:26
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/151
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
CHIMES Study Patient Advisory Group questionnaire
DUNK MS
SIDECAR: A SHIFT-MS film about the misapprehensions of advanced multiple sclerosis
Accelerated Cure Project for MS Survey: Caregiver Relationships with Healthcare Providers
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 151
Hosted By: Jon Strum
Guests: Dr. Heidi Maloni, Blake Arnet
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, DunkMS, RealTalkMS
Privacy Policy
Conversations about MS almost always get around to the high cost of MS disease-modifying therapies. Joining me on the podcast is the CEO of Genentech, Alexander Hardy. Genentech is a biotech company that many of you know as the manufacturer of Ocrevus, the first approved disease-modifying therapy that treats both relapsing-remitting MS and primary progressive MS. During our wide-ranging conversation, Alexander and I get into the cost of MS prescription medications, the real costs of bringing a new drug to market, racial disparities in clinical trials, inequities in our healthcare system, and more. It's a conversation that you won't want to miss. We'll also tell you where you can get a FREE copy of Dr. Brandon Beaber's book, Resilience in the Face of Multiple Sclerosis, and where to sign up for the next series of Virtual Jumpstart programs from CAN-DO MS. We'll even share the details about this Sunday's Longest Day of Golf, a creative (and very successful!) DIY fundraising event for the National MS Society. We're also talking about a newly published study that shows that most relapsing-remitting MS disability accumulation is progressive and not tied to relapses. And we'll tell you about another study that shows that most people living with MS want to discuss the cost of their treatment with their neurologist, but very few do. We'll even share our thoughts about how we can begin to fix this. We have a lot to talk about! Are you ready for RealTalk MS??!
It's Our 150th Episode! :22
Get in Touch with RealTalk MS 1:36
Get Your Free Copy of Resilience in the Face of Multiple Sclerosis 3:34
CAN-DO MS Virtual Jumpstart Programs 4:43
The Longest Day of Golf Fundraising Event for the National MS Society 5:38
Study Finds Most Relapsing-Remitting MS Disability Accumulation Is Progressive and Not Tied to Relapses 7:29
Survey Shows Most MS Patients Want to Discuss the Cost of MS Care...But Don't 9:50
"Patients" are Customers! 11:31
My Interview with Alexander Hardy 13:09
Share this episode 29:31
Please Support the National MS Society COVID-19 Response Fund 29:50
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/150
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
To receive a free copy of Resilience in the Face of Multiple Sclerosis, just jump onto Twitter, and request your copy by sending a Tweet to the author, @Brandon_Beaber.
CAN-DO MS Virtual Jumpstart Programs
Longest Day of Golf Fundraising Event for the National MS Society
STUDY: Contribution of Relapse-Independent Progression vs Relapse-Associated Worsening to Overall Confirmed Disability Accumulation in Typical Relapsing Multiple Sclerosis in a Pooled Analysis of 2 Randomized Clinical Trials
STUDY: Perceptions and Experiences of Multiple Sclerosis Patients Regarding Out-of-Pocket Costs of Care Discussions
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 150
Hosted By: Jon Strum
Guests: Alexander Hardy
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Genentech, Ocrevus, Resilience, RealTalkMS
Privacy Policy
The International Progressive MS Alliance is about to publish a paper that recommends advancing research on a specific biomarker to predict MS progression, and we're getting a pre-publication preview of what that paper is all about. My guests are Dr. Robert Fox, a neurologist and Vice-Chair for Research at the Cleveland Clinic Neurological Institute, and Caroline Sincock, who lives with progressive MS. Both Doctor Fox and Caroline are members of the International Progressive MS Alliance Scientific Steering Committee and are among the authors of the new paper that we're going to preview. We're also talking about the results of a study that show how increasing the energy in cells damaged by demyelination may stop MS progression. We'll tell you why Mayzent failed to gain approval to treat active secondary progressive MS in England. We'll introduce you to the winner of the first Novartis Innovation Prize for Assistive Tech for Multiple Sclerosis. And we'll discuss study results that show that a protein in the blood called neurofilament light chain may predict MS progression. We have a lot to talk about! Are you ready for RealTalk MS??!
The 2020 ACTRIMS-ECTRIMS Virtual Conference 3:10
Boosting cellular energy at sites of myelin loss may stop MS progression 4:18
Why NICE failed to approve Mayzent to treat active secondary progressive MS 6:29
Novartis Innovation Prize awarded to AccessNow 9:04
Elevated neurofilament light chain may predict risk of MS progression 10:02
My Interview with Dr. Robert Fox and Caroline Sincock 11:27
Share this episode 42:11
Please Support the National MS Society COVID-19 Response Fund 42:30
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/149
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
International Progressive MS Alliance
STUDY: Enhanced Axonal Response of Mitochondria to Demyelination Offers Neuroprotection: Implications for Multiple Sclerosis
AccessNow
STUDY: Plasma Neurofilament Light Levels are Associated with Risk of Disability in Multiple Sclerosis
Join the RealTalk MS Facebook Group
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Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 149
Hosted By: Jon Strum
Guests: Dr. Robert Fox and Caroline Sincock
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
The guidance for using MS disease-modifying therapies during the COVID-19 pandemic has been updated. My guest is Dr. Aaron Miller, the Chair of the National MS Society’s National Medical Advisory Committee, the Medical Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis, and a Professor of Neurology at the Icahn School of Medicine at Mount Sinai, and we're talking about the new guidance for each and every MS disease-modifying therapy that's currently available. Last week, in the middle of the night, protections for people with pre-existing health conditions came under attack. We'll let you know what it all means and what's at stake for every person in the U.S. living with MS. We're also talking about the results of a study that show more people than ever are exploring alternative medicine in managing their MS symptoms. And we'll tell you about a new online MS Treatment Adherence Resource Center. In last week's International Progressive MS Alliance global webcast, 3 top MS experts shared very encouraging news about the development of new life-changing treatments for progressive MS. We'll let you know where to find the video replay of the webcast. And while you're checking online video replays, we'll let you know where you can find a replay of the Consortium of Multiple Sclerosis Centers' virtual Patient Education Program. We have a lot to talk about! Are you ready for RealTalk MS??!
In a late-night brief, the Trump administration asks the Supreme Court to invalidate Obamacare and eliminate protections for people with pre-existing health conditions 1:24
Catch the video replay of the International Progressive MS Alliance global webcast 6:04
Catch the video replay of the CMSC Patient Education Program 7:34
Survey says...Alternative medicine is widespread among people living with MS 8:19
MS Treatment Adherence Resource Center is launched 11:03
My Interview with Dr. Aaron Miller 13:06
Share this episode 23:26
Please Support the National MS Society COVID-19 Response Fund 23:45
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/148
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
Video Replay: International Progressive MS Alliance Webcast
Video Replay: Consortium of MS Centers Patient Education Program
STUDY: Cross-Sectional Survey of Complementary and Alternative Medicine Used in Oregon and Southwest Washington to Treat Multiple Sclerosis: A 17-Year Update
MS Treatment Adherence Resource Center
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 148
Hosted By: Jon Strum
Guests: Dr. Aaron Miller
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID19, RealTalkMS
Privacy Policy
Integrative medicine combines evidence-based alternative medicine with conventional medicine. My guest is Dr. Allen Bowling, an internationally renowned neurologist who specializes in integrative medicine for MS. When it comes to care and treatment for MS, Dr. Bowling has published over 100 articles in clinical and basic science journals. He's been involved in research related to nutrition, dietary supplements, and other non-pharmacologic therapies for the past 30 years. And our conversation covers CBD and other cannabis products as potential treatments for MS symptoms, we'll talk about diet and exercise, over the counter supplements, maintaining your emotional health, and lots more. An international committee of distinguished experts has just issued an important clarification in the terminology used to describe the status of a person with MS (including "active" secondary progressive, "worsening", and "progression"). We'll tell you all about this clarification and explain how it affects everything from recruiting for clinical trials to providing access to current MS disease-modifying therapies. We're also talking about a new Cleveland Clinic study that shows that neurological function deteriorates more quickly in depressed MS patients. We'll tell you about a study that underscores the importance of screening and treating people living with MS for anxiety along with depression. And you'll hear about a new web-based tool designed to help manage your emotional wellness. We have a lot to talk about! Are you ready for RealTalk MS??!
Expert panel clarifies terms used in describing MS disease status 2:33
COVID-19 in people with MS being treated with Ocrevus 7:45
Study shows neurological function deteriorates quicker in depressed MS patients 10:44
Anxiety & Depression in MS -- Study measures impact on quality of life 13:34
MS Trust & Biogen launch ACT MySelf web-based emotional wellness tool 16:06
My Interview with Dr. Allen Bowling 19:19
Share this episode 43:18
Please Support the National MS Society COVID-19 Response Fund 43:41
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/146
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
Dr. Allen Bowling: Neurology Care
The 2013 Clinical Course Descriptors for Multiple Sclerosis: A Clarification
COVID-19 in Persons with Multiple Sclerosis Treated with Ocrelizumab -- A Pharmacovigilance Case Series
STUDY: Depression in MS is Associated with Worsening Neuroperformance, Relapses, and New Brain Lesions
STUDY: Anxiety and Depression in Multiple Sclerosis (MS): Antecedents, Consequences, and Differential Impact on Well-Being and Quality of Life
ACT MySelf
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 146
Hosted By: Jon Strum
Guests: Dr. Allen C. Bowling
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
Over the past several weeks, the United States has been forced to re-visit, re-examine, and reconsider its own history of racial inequality. This difficult but necessary national conversation has been driven by instances of racial injustice that have their origins in much broader systemic or institutional racism. Our conversations on RealTalk MS typically focus on multiple sclerosis research and multiple sclerosis care. So how does the subject of racial inequality find its way onto today's episode? My guest is Dr. Jackie Bhattarai, a clinical psychologist and Assistant Professor of Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine. Dr. Bhattarai's research is focused on identifying and understanding the causes of racial disparities in multiple sclerosis care. I think you'll find our conversation thought-provoking, maybe surprising and, I hope, concerning. We're also inviting you to this week's International Progressive MS Alliance global webcast when an international panel of MS experts will share the progress being made to speed the development of life-changing treatments for progressive MS. Our experts will also update us on the experiences of people living with MS who have contracted COVID-19, and how people with MS can minimize their risks during the pandemic. We'll tell you about a new National Institutes of Health grant aimed at determining the reliability of a proposed biomarker for MS. And we'll share the sobering results of a new study about MS and depression. We have a lot to talk about! Are you ready for RealTalk MS??!
Don't miss the International Progressive MS Alliance Webcast 1:30
Cleveland Clinic receives NIH grant to study MS diagnostic biomarker 3:58
Depression is 2-3 times more likely in MS patients 6:23
My Interview with Dr. Jackie Bhattarai 9:21
Share this episode 26:35
Please Support the National MS Society COVID-19 Response Fund 26:54
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/147
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
International Progressive MS Alliance Webcast Registration
STUDY: Incident Depression in Patients Diagnosed with Multiple Sclerosis: A Multi-Database Study
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 147
Hosted By: Jon Strum
Guests: Dr. Jackie Bhattarai
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
MS changes as we age and it follows that managing MS should change, too. We're talking about managing MS through different stages of life with Dr. Jennifer Graves, an associate professor of neuroscience at UC San Diego Health, Director of the UC San Diego Neuroimmunology Research Program, and the Director of the Rady Children’s Hospital Pediatric MS Clinic. There's also lots of news to share about MS disease-modifying therapies including the availability of a newly-approved DMT, an extended FDA review of a potential DMT that was expected to be approved this month, encouraging news about yet another potential DMT that's currently in development, and a change in an already-approved DMT.
We have a lot to talk about! Are you ready for RealTalk MS??!
An important message from National MS Society President & CEO, Cyndi Zagieboylo :21
Did you catch our special bonus episode recapping the Consortium of MS Centers Annual Meeting? 2:32
Zeposia, a new MS disease-modifying therapy is now available in the U.S. 4:33
FDA Extends its review of Ofatumumab 5:51
EMD Serono Shares Encouraging Data from its Phase 2 Clinical Trial of Evobrutinib 6:59
EMA Approves Shorter Infusion Time for Ocrevus 7:52
My Interview with Dr. Jennifer Graves 9:07
Share this episode 25:26
Please Support the National MS Society COVID-19 Response Fund 25:50
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/145
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
Special Episode: CMSC 2020 Annual Meeting Recap
Zeposia Patient Information
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating and Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 145
Hosted By: Jon Strum
Guests: Dr. Jennifer Graves
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
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Don't miss our recap of the Consortium of Multiple Sclerosis Centers Annual Meeting with Internationally Certified MS Nurse, Cherie Binns. We're talking about aging with MS, managing mood and depression, the latest information on diet and exercise, and more.
We have a lot to talk about! Are you ready for RealTalk MS??!
My guest this week is Dr. Amy Sullivan, a Clinical Health Psychologist and the Director of Behavioral Medicine at the Mellen Center for MS Treatment and Research at the Cleveland Clinic. We're talking about fighting feelings of isolation, building resiliency, caregiver emotional wellness, and how we should be thinking about living in a "new normal" world. Massachusetts General Hospital and iConquer MS surveyed more than 1,000 people living with MS about the impact of the COVID-19 pandemic on their daily lives. We're among the first to hear the survey results from investigator Dr. Farrah Mateen and Hollie Schmidt.
MS research is about to take a quantum leap forward. We're talking about how the MULTI-ACT patient engagement roadmap will change the face of MS research and involve people affected by MS in ways that they've never been involved in research before.
And we'll share new data from an ongoing clinical trial that's evaluating a cutting-edge cell therapy designed to eliminate B-cells carrying the Epstein-Barr virus. (Many experts believe that eliminating the Epstein-Barr virus Barr virus might eliminate most multiple sclerosis.)
We have a lot to talk about! Are you ready for RealTalk MS??!
The International Progressive MS Alliance is partnering with MULTI-ACT -- and why that's a major step forward in MS research 2:26
New Data About ATA 188 Cell Therapy Clinical Trial Shared at the European Academy of Neurology Virtual Meeting 5:47
Dr. Farrah Mateen & Holly Schmidt Share Results from the Massachusetts General Hospital/iConquer MS COVID-19 Survey 10:08
My Interview with Dr. Amy Sullivan 30:21
Share this episode 41:27
Please Support the National MS Society COVID-19 Response Fund 41:50
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/144
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
International Progressive MS Alliance Announces Partnership with MULTI-ACT As Part of World MS Day Celebrations
MULTI-ACT Phase 1 Study to Evaluate the Safety and Efficacy of ATA188 in Subjects with Progressive Multiple Sclerosis Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 144
Hosted By: Jon Strum
Guests: Dr. Amy Sullivan, Dr. Farrah Mateen, Hollie Schmidt
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Coronavirus, COVID19, iConquerMS, RealTalkMS
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My guest is Dr. Ellen Mowry, a Professor of Neurology at Johns Hopkins University, where she also serves as the Director of the MS Experimental Therapeutics Program. Dr. Mowry has devoted her entire career to MS research, and her past research has led to breakthroughs in our understanding of MS. Today, Dr. Mowry is the co-principal investigator of an important research study whose outcome could have an impact on the treatment strategy for everyone diagnosed with MS. We're also talking about World MS Day festivities. A major MS conference has gone virtual this week. We'll tell you how you can attend for free! And you'll learn about some outstanding new online resources -- webinars, presentations, and videos that you can access while you're at home.
We have a lot to talk about! Are you ready for RealTalk MS??!
Don't Miss These World MS Day Festivities 2:57
How You Can Attend a Free MS Conference 5:10
How You Can Attend a Free MS Patient Day Program 6:24
Catch All the Ask An MS Expert Video Replays 7:22
Catch All of the National MS Society's Exercise Videos 8:15
Register for these Can-Do MS Monthly Webinars 8:45
My Interview with Dr. Ellen Mowry 10:32
Share this episode 31:32
The National MS Society COVID-19 Response Fund 32:03
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/143
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us in the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
The TREAT-MS Clinical Trial for MS Patients
World MS Day Tune In For MS Website Registration World MS Day Tune In For MS Facebook Registration 2020 Consortium of MS Centers Virtual Annual Meeting Registration 2020 CMSC Virtual Patients Day Meeting Registration National MS Society Video: Aerobic Exercise Tips for MS National MS Society Video: Stretching Tips for MS National MS Society Video: Breathing Tips for MS Can-Do MS Webinar Series Registration Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 143
Hosted By: Jon Strum
Guests: Dr. Ellen Mowry
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Coronavirus, COVID19, RealTalkMS
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MS research has reached an important moment. My guest, Dr. Bruce Bebo, calls it "an inflection point." Dr. Bebo is the Executive Vice-President of Research for the National MS Society, and we're talking with Bruce about the MS research projects that have him most excited, why now is the time to write the final chapter in solving the riddle of MS, and how we might even go about preventing people from developing MS. We'll also give you all the details about the MS Society's newly published recommendations for exercise and physical activity for everyone living with MS. And we'll share the new question that you should be asking your neurologist at your next appointment.
We'll tell you about this year's recipient of the Dystel Prize for MS research. And you'll hear about a study that looked at the experiences of African-American women with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
National MS Society Publishes Exercise Recommendations for Everyone Living with MS 1:00
Dystel Prize for MS Research Awarded to Dr. Ian Duncan 5:11
The Experiences of African-American Women with MS 6:12
My Interview with Dr. Bruce Bebo 10:07
Share this episode 28:35
The National MS Society COVID-19 Response Fund 29:08
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/142
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us on the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
Exercise and Lifestyle Physical Activity Recommendations for People with Multiple Sclerosis Throughout the Disease Course
The Experience of African-American Women with Multiple Sclerosis
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 142
Hosted By: Jon Strum
Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Interferon, Betaseron, Ocrevus, Coronavirus, COVID19, RealTalkMS
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For the past 8 weeks, we've been talking about COVID-19 and MS, but there hasn't been any real data on the effect of COVID-19 on people living with MS. That's finally changed, and we're beginning to see some limited data here in the U.S., as well as data coming out of Italy. My guest is Dr. Robert Shin and we're talking about what the experts are learning from this newly-published data about the effect of COVID-19 on MS. We'll also get into whether someone getting Ocrevus infusions today should be worrying about the effectiveness of a COVID-19 vaccine. We'll talk about the things that people living with MS should be thinking about as our local communities begin to re-open for business. And we'll get into how the COVID-19 pandemic might affect MS care in the future.
We're also talking about the new COVID-19 Emergency Food Assistance Program for people living with MS, cancer, and rheumatoid arthritis.
We'll tell you about the COVID-19 at-home test kit that received FDA approval last week. It only requires a simple saliva sample, making it a much more user-friendly test.
And you'll hear about the MS disease-modifying therapy that may actually help people recover from COVID-19 faster.
We have a lot to talk about! Are you ready for RealTalk MS??!
COVID-19 & Nursing Homes (...and why I care!) :21
At-Home COVID-19 Saliva Test Receives FDA Approval 4:43
COVID-19 Emergency Food Assistance Program Available for People Living with MS 6:09
Study Shows MS Medication May be Helpful in Speeding Up Recovery from COVID-19 8:11
My Interview with Dr. Robert Shin 11:13
Share this episode 30:12
The National MS Society COVID-19 Response Fund 30:43
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/141
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us on the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
COVID-19 Emergency Food Assistance Program Application
Triple Combination of Interferon Beta 1b, Lopinavir-Ritonavir, and Ribavirin in the Treatment of Patients Admitted to Hospital with COVID-19: An Open-Label, Randomised, Phase 2 Trial
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 141
Hosted By: Jon Strum
Guests: Dr. Robert Shin
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Interferon, Betaseron, Ocrevus, Coronavirus, COVID19, RealTalkMS
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My guest is Dr. Elizabeth Crabtree, the Medical Director at the Tulane Center for Comprehensive MS Care. Dr. Crabtree is passionate about creating meaningful care models for patients living with MS. And this week, we're taking a deep dive with Dr. Crabtree into the impact of nutrition, diet, and vitamins in managing MS symptoms. We're also going to get into the impact of stress on MS, and Dr. Crabtree will even share some tips on how to best manage that stress. We're also talking about a new mouse study that suggests starting treatment with Rituximab in people who are at risk of developing MS or in MS patients before they develop any motor symptoms may be a way to avoid inflammation and myelin loss, and actually prevent MS from further developing.
We'll tell you about a new nanosensor that can diagnose MS with 97% accuracy before symptoms even develop.
We'll share new data that shows Mayzent slowed physical disability progression and provided cognitive benefits to people with secondary progressive MS. And you'll hear about the study that shows that early use of Ocrevus may lower the need for a walking aid by 49% over 6 years.
We have a lot to talk about! Are you ready for RealTalk MS??!
A Fun Fact About Podcasts (...and a Thank You!) :23
Mouse Study Suggests Early Treatment with Rituximab May Prevent MS Symptoms From Developing 2:58
Nanosensor Can Diagnose Early Stage MS Before Symptoms Develop 5:18
New Data Shows Mayzent Slows Disability Progression & Provides Cognitive Benefits to People with Secondary Progressive MS 8:03
Study Shows Early Use of Ocrevus May Lower the Need for Walking Aid by 49% Over 6 Years 10:42
My Interview with Dr. Elizabeth Crabtree 13:33
Share this episode 28:50
The National MS Society COVID-19 Response Fund 29:25
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/140
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us on the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
National MS Society COVID-19 Response Fund
Rituximab Prevents the Development of Experimental Autoimmune Encephalomyelitis (EAE): Comparison with Prophylactic, Therapeutic, or Combinational Regimens
Nanoimmunosensor Based on Atomic Force Spectroscopy to Detect Anti-Myelin Basic Protein Related to Early-Stage Multiple Sclerosis
Join the RealTalk MS Facebook Group
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 140
Hosted By: Jon Strum
Guests: Dr. Elizabeth Crabtree
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Rituximab, Ocrevus, Coronavirus, COVID19, RealTalkMS
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This week, we're going to hear from 3 experts on very different aspects of COVID-19 and MS.
Kathy Costello, the Associate Vice-President of Healthcare Access for the National Multiple Sclerosis Society is going to give us our weekly update on COVID-19 and MS.
Mandy Rohrig, a physical therapist who specializes in the rehabilitation of people with Multiple Sclerosis and Parkinson’s disease. is going to talk to us about exercises that you can do at home to stay healthy.
And then you'll meet Nancy Guerrera. Nancy is a registered nurse who was diagnosed with MS in 2007. And last month, Nancy was diagnosed with COVID-19. We'll hear exactly what it's been like for someone living with MS to contract COVID-19 after being on Ocrevus for the past 3 years.
We have a lot to talk about! Are you ready for RealTalk MS??!
A Social Media Post That Got It Wrong :22
COVID-19 & MS Update with Kathy Costello 4:52
Exercising at Home to Stay Healthy with Mandy Rohrig 14:12
Living with MS & Diagnosed with COVID-19: My Interview with Nancy Guerrera 23:32
Share this episode 38:09
Donate to Walk-MS 38:39
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/139
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us on the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Join the RealTalk MS Facebook Group
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 139
Hosted By: Jon Strum
Guests: Kathy Costello, Mandy Rohrig, and Nancy Guerrera
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Ocrevus, Coronavirus, COVID19, RealTalkMS
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This week, and for the foreseeable future, we're committed to sharing the most updated and reliable information on COVID-19 and MS.
Returning as my guest on the podcast is Dr. Mitzi Joi Williams. Dr. Williams is a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who is passionate about educating and empowering people affected by MS to understand the disease process and the goals of treatment. She is a sought-after consultant, speaker, researcher, and author with expertise in understanding MS in underserved and ethnic minority populations.
Dr. Williams is giving us our weekly update on what we're learning about COVID-19 & MS. We're talking about COVID-19 and starting, stopping, or pausing disease-modifying therapies. And we're taking a closer at how COVID-19 is impacting minority populations and how MS itself impacts minority populations differently.
We'll tell you everything you need to know about COVID-19 tests, COVID-19 antibody tests, and those shady COVID-19 at-home test kits.
We'll also tell you about how some MS clinical trials are being paused, and what that means when it comes to the availability of new disease-modifying therapies.
And we'll tell you about a study that shows that ethnicity is not a factor in predicting cognitive impairment in early MS. But the study may have inadvertently highlighted an unfortunate reality in our society.
We have a lot to talk about! Are you ready for RealTalk MS??!
The Best Email Ever :35
Everything You Need to Know About COVID-19 Tests 3:36
Atara Biotherapeutics Pauses ATA 188 Clinical Trial for PPMS and SPMS 8:34
Study Shows Cognitive Impairment in Early MS Not Linked to Ethnicity 11:22
My Interview with Dr. Mitzi Joi Williams 15:50
Share this episode 31:11
Donate to Walk-MS 21:43
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/138
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us on the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Race, Ethnicity, and Cognition in Persons Newly Diagnosed with Multiple Sclerosis
The RealTalk MS Facebook Group
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 138
Hosted By: Jon Strum
Guests: Dr. Mitzi Joi Williams
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Ocrevus, Coronavirus, COVID19, RealTalkMS
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This week, and for the foreseeable future, we're committed to sharing the most updated and reliable information on COVID-19 and MS.
Joining me as my guest is Dr. Tanuja Chitnis, a board-certified neurologist specializing in multiple sclerosis, with a dual appointment at the Brigham and Women’s Hospital and Massachusetts General Hospital in Boston.
Dr. Chitnis is a Professor of Neurology at Harvard Medical School and a Senior Scientist at the Ann Romney Center for Neurologic Diseases at Brigham & Women’s Hospital, where Dr. Chitnis created the Translational Neuroimmunology Research Center, which is focused on bringing bench discoveries to clinical trials for multiple sclerosis and related diseases.
Dr. Chitnis serves on the advisory boards and steering committees of several MS-related organizations, including the National MS Society’s Medical Advisory Committee, and she’s written more than 200 publications and reviews related to multiple sclerosis.
We're discussing who, among everyone living with MS, is immunocompromised and who isn't -- and why that matters when it comes to being susceptible to COVID-19. We're talking about whether pandemic-related stress can lead to an MS relapse. And we'll look at the outcomes of MS patients who have already contracted COVID-19.
We'll remind you about the value of a fact, and why credible information from reliable sources is so critical right now. And we'll connect you to the video replay of last Friday's Ask An MS Expert webinar. (I hope you already consider these weekly webinars with leading MS experts answering your questions to be "can't miss" viewing.)
We'll also tell you about a new North American MS/COVID-19 patient registry for healthcare professionals that will help define best treatment strategies and best patient outcomes for people living with MS who contract COVID-19 in the future.
And now that we all have a bit more time on our hands during the day, we have some suggestions for how you can constructively spend some of that time, including:
- Taking the University of Washington MS Rehabilitation & Wellness Research Center's online survey
- Taking the Massachusettes General Hospital online survey
- Getting involved in iConquer MS patient-powered research
- ...and, if you happen to be using an iPhone, even giving RealTalk MS a rating & review!
We have a lot to talk about! Are you ready for RealTalk MS??!
Check out Episode 4 of the National MS Society's Ask an MS Expert Webinar Series :56
The Value of Facts in a Time of Uncertainty 2:36
UW MS Rehabilitation & Wellness Research Center COVID-19 Survey 4:54
iConquer MS COVID-19 Survey 5:35
National MS Society & Consortium of Multiple Sclerosis Centers Launch COViMS North American Registry 6:41
Have a Minute? Get In Touch! 8:36
My Interview with Dr. Tanuja Chitnis 11:03
Share this episode 20:14
Donate to Walk-MS 20:45
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/137
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.com
Phone: (310) 526-2283
And don't forget to join us on the RealTalk MS Facebook group!
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
Federal Coronavirus Response and Economic Stimulus Information
University of Washington COVID-19 Online Survey
iConquer MS COVID-19 Online Survey
The RealTalk MS Facebook Group
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 137
Hosted By: Jon Strum
Guests: Dr. Tanuja Chitnis
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Ocrevus, Coronavirus, COVID19, RealTalkMS
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This week, and for the foreseeable future, we're committed to sharing the most updated and reliable information on COVID-19 and MS.
Joining me as my guest is Dr. Kevin Alschuler, a Rehabilitation Psychologist with appointments as an Associate Professor in the Department of Rehabilitation Medicine and Adjunct Associate Professor in the Department of Neurology at the University of Washington. Dr. Alschuler also serves as the Psychology Director for the UW Medicine Multiple Sclerosis Center.
Dr. Alschuler works clinically with patients with Multiple Sclerosis and other chronic medical conditions. And his primary role is to help patients develop effective strategies for managing the physical and emotional symptoms that present with their medical condition.
Dr. Alschuler is also an active researcher, and his primary areas of focus include chronic pain, adjustment to medical condition, and the multidisciplinary treatment of medical conditions, currently with an emphasis on multiple sclerosis.
We're talking with Dr. Alschuler about how people living with MS can build their personal resilience in the face of the COVID-19 pandemic. He'll share some specific steps that you can start taking today that will help reduce the stress that you're feeling and empower you to come through the other side of these uncertain times with inner strength and greater calm.
We'll connect you to the video replay of last Friday's Ask An MS Expert webinar. I hope you consider these weekly webinars with leading MS experts answering your questions to be "can't miss" viewing.
We're also talking about the new RealTalk MS Facebook group. We'll tell you which states have re-opened enrollment for health insurance under the Affordable Care Act. And you'll find out how and where to apply online for the MS Foundation's Emergency Assistance Grants.
You'll learn about the new MS disease-modifying therapy that the FDA approved last week -- but it won't be available for quite a while (we'll tell you why). We'll share some new online resources, including online information and support resources for MS caregivers. And speaking of MS caregivers, we'll tell you about an online survey for MS caregivers that we hope you (or a family caregiver) will take.
We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Check out Episode 2 of the National MS Society's Ask an MS Expert Webinar Series :36 Announcing the RealTalk MS Facebook Group! 4:50 How about a quick favor? 5:26 Several states re-open Affordable Care Act enrollment 6:12
The MS Foundation offers Emergency Assistance Grants 7:43
FDA Approves Zeposia 8:49
HealthCentral launches its new Multiple Sclerosis Hub 10:21
COVID-19 Online Resources for MS Caregivers 10:48
Please take this online survey for MS Caregivers 11:14
My Interview with Dr. Kevin Alschuler 13:17
Share this Episode 28:41
Reminder...Please Donate to Walk-MS 29:14
___________
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/135
**\_\_\_\_\_\_\_\_\_\_\_**
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask An MS Expert Video Replay
What You Need to Know About Coronavirus (COVID-19)
The RealTalk MS Continuing the Conversation Facebook Group
Give RealTalk MS a Rating & Review MS Foundation Emergency Assistance Grant Application HealthCentral's Multiple Sclerosis Hub
COVID-19 Resources for Caregivers
Accelerated Cure Project MS Caregiver Survey
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 135
Hosted By: Jon Strum
Guests: Dr. Kevin Altschuler
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Coronavirus, COVID19, RealTalkMS
Privacy Policy
This week, and for the foreseeable future, we're committed to sharing the most updated reliable information on COVID-19 and MS.
Joining me as my guest is Dr. Aaron Miller. Dr. Miller is the Chair of the Society’s National Medical Advisory Committee and is also the Medical Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis and a Professor of Neurology at the Icahn School of Medicine at Mount Sinai. He also serves as Vice-Chair for Education in the Department of Neurology. Dr. Miller was the first Chairman of the multiple sclerosis section of the American Academy of Neurology and he's participated in numerous clinical trials of new MS treatments.
We're talking with Dr. Miller about the National MS Society's guidance for MS disease-modifying therapies and the coronavirus (COVID-19), whether you should hold off starting a new disease-modifying therapy, whether you have to take additional precautions surrounding the other medications you might be using to manage MS symptoms, whether COVID-19 can cause an MS relapse, and more.
We're also talking about the MS Society's new Ask An MS Expert webinar series that we're hosting. We'll tell you about the Families First Coronavirus Response Act that was signed into law last week, and how it might affect you and your family.
We're sharing news about a study that shows that women require fewer MS-related hospitalizations as they age. We'll tell you how virtual reality can reduce the risk of falls by predicting balance issues among people with MS before they, themselves, become aware that they might have balance issues. And Janssen, a division of Johnson & Johnson, has applied for FDA approval of a disease-modifying therapy for relapsing forms of MS.
We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Welcome to the New Normal :18 Introducing the National MS Society's Ask an MS Expert Webinar Series :32 Make sure you're getting your COVID-19 info from credible sources 3:47 COVID-19 on the National MS Society's Website 4:58
The Families First Coronavirus Response Act Signed Into Law 5:47
Study Finds Fewer MS-Related Hospitalizations As Women Age 7:46
Study Uses Virtual Reality To Detect Balance Issues In MS 10:59
Janssen Submits Application for FDA Approval of Ponesimod 13:47
My Interview with Dr. Aaron Miller 14:51
Share this Episode 24:32
Reminder...Please Donate to Walk-MS 25:05
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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
National MS Society's Ask an MS Expert Webinar: What You Need to Know About MS & COVID-19 with Dr. Aaron Miller and Kathy Costello
What You Need to Know About Coronavirus (COVID-19)
MS Disease-Modifying Treatment Guidelines for Coronavirus (COVID-19)
Predictors of Hospitalization in a Canadian MS Population: A Matched Cohort Study Can Optical Flow Perturbations Detect Walking Balance Impairment in People with Multiple Sclerosis?
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 134
Hosted By: Jon Strum
Guests: Dr. Aaron Miller
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Coronavirus, COVID19, RealTalkMS
Privacy Policy
The National MS Society's National Medical Advisory Committee has issued its recommendations for MS disease-modifying therapies and the coronavirus (COVID-19), and we're sharing them in this episode.
You'll also hear about a new disease-modifying therapy that's about to receive FDA approval. We'll tell you about a clinical trial for a potential disease-modifying therapy for progressive MS that fell short of achieving its goals. And you'll hear about study results that indicate there are still a lot of people living with MS who aren't acting in their own best interest.
My guest this week is Dawnia Baynes. Besides being an MS Activist, Dawnia facilitates a very special MS support group, and last month, the Southern-California Nevada Chapter of the National MS Society named Dawnia their Inspirational Person of the Year.
We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Make sure you're getting your COVID-19 info from credible sources :39 The Coronavirus (COVID-19) and MS Disease-Modifying Therapies 2:41
Ozanimod scheduled for FDA Approval this Month 2:09
High-Dose Biotin For Progressive MS Fails to Improve Disability 7:41
Disease-Modifying Therapy Non-Compliance Among People Living with MS 9:07
My Interview with Dawnia Baynes 12:05
Share this Episode 24:26
Reminder...Please Donate to Walk-MS 24:46
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
What You Need to Know About Coronavirus (COVID-19)
MS Disease-Modifying Treatment Guidelines for Coronavirus (COVID-19)
Non-Compliance With Disease-Modifying Therapies in Patients With Multiple Sclerosis: A Qualitative Analysis
Support Group for Teens Living with MS
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 133
Hosted By: Jon Strum
Guests: Dawnia Baynes
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Coronavirus, COVID-19, RealTalkMS
Privacy Policy
Welcome to this MS Awareness Week bonus episode of RealTalk MS. In this special episode, I'm talking with Damian Washington. Damian is an actor and a prolific vlogger. He was diagnosed with MS in 2016, and when you watch one of Damian's videos, it's impossible not to be hooked by his infectious personality. I'm also talking with Dan and Jennifer Digmann. Jennifer was diagnosed with progressive MS in 1997, and Jennifer's husband Dan was diagnosed with relapsing-remitting MS in 2000. Dan & Jennifer met at a National MS Society event in 2002, and they were married in 2005. Together, they're taking on MS as a couple. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ It's MS Awareness Week! :18 My Interview with Damian Washington 2:01
My Interview with Dan & Jennifer Digmann 14:26
Share This Episode 28:53
Reminder...Please Donate to Walk MS 29:21
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Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Damian Washington's Vlog
Dan & Jen Digmann: A Couple Takes on MS
Jon's WALK MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Bonus Episode: MS Awareness Week
Hosted By: Jon Strum
Guests: Damian Washington, Dan & Jennifer Digmann
Tags: MS, MultipleSclerosis, MSResearch, COVID19, MSSociety, RealTalkMS
Privacy Policy
It's hard to talk to anyone about anything without talking about the coronavirus. And because the CDC has announced that people with weakened immune systems may be particularly vulnerable to this virus, people affected by MS can feel as though they have even more reason to worry.
My guest is clinical psychologist Dr. Abbey Hughes and we're talking about how people affected by MS should be thinking about the coronavirus, and what they should and shouldn't be doing about it.
You'll also hear about a newly approved MS disease-modifying therapy and another MS disease-modifying therapy that's just been submitted for approval.
We'll tell you how the Affordable Care Act wound its way to the Supreme Court, and we'll look at what's at stake for people affected by MS or any other chronic illness.
We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Look For the MS Awareness Week Bonus Episode on Thursday :21 I'm Back from the National MS Society Public Policy Conference :45
I Think I Might Owe You an Explanation 2:09
Canada Approves Mayzent for Treating Active Secondary Progressive MS 5:58
Janssen Submits Application to EMA for Approval of Ponesimod 6:36
How the Affordable Care Act Wound Up in the U.S. Supreme Court 7:40
My Interview with Dr. Abbey Hughes 12:36
The Things You Need to Know About the Coronavirus 30:22
Share this Episode 33:07
Reminder...Please Donate to Walk-MS 33:29
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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
What You Need to Know About Coronavirus (COVID-19)
Jon's WALK-MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 132
Hosted By: Jon Strum
Guests: Dr. Abbey Hughes
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Coronavirus, COVID-19, RealTalkMS
Privacy Policy
My guest is Dr. Jackie Bhattarai and we're talking about her research exploring the disparities in MS-related depression and fatigue symptoms between African-Americans living with MS and Caucasians living with MS. We're also talking about positive clinical trial results for a drug that slows disability progression in people living with primary progressive MS and non-active secondary progressive MS. And we'll tell you about the new MS drug from Novartis that's awaiting FDA and EMA approval. You'll learn about a study that shows how high doses of Vitamin D increased inflammation and worsened disability in mice that had the "mouse version" of MS. And you'll hear about the insurance company in Utah that's saving money by flying people to Mexico to purchase their prescription medications (and they're even throwing in a $500 cash bonus for every trip you make!). We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Greetings from the MS Society's Public Policy Conference :21 Where I'll Be This Month 1:02
Positive Clinical Trial Results Posted for Masitinib 4:18
Novartis Applies for FDA & EMA Approval for Ofatumumab 6:07
High Dosage of Vitamin D Worsens MS Disability in Mice 7:15
Insurer Saves Money by Flying People to Mexico for Their Prescription Medications 10:15
My Interview with Dr. Jackie Bhattarai 13:58
Share This Episode 25:57
Reminder...Please Donate to Walk MS 26:19
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Positive Top-Line Phase 2B/3 Results for Masitinib in Progressive Forms of MS
High Dose Vitamin D Worsens Experimental CNS Autoimmune Disease By Raising T Cell-Excitatory Calcium
Jon's WALK MS Fundraising Page
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 131
Hosted By: Jon Strum
Guests: Dr. Jackie Bhattarai
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, MSPPC20, RealTalkMS
Privacy Policy
Welcome to this Bonus Episode of RealTalk MS, coming to you from the 2020 ACTRIMS Forum. ACTRIMS is an acronym for the Americas Committee for Treatment and Research in Multiple Sclerosis. And this year, 1200 MS research scientists and clinicians have come together to share the latest MS research news and insights. We'll take you inside the proceedings at ACTRIMS and share the highlights of some of the most compelling presentations. My first guest is the recipient of this year's Barancik Prize, Professor Francisco Quintana, and we're talking about Professor Quintana's innovative breakthrough research. And my second guest, Clinical Specialist Micki Maes, will break down the details of a cutting edge application that uses artificial intelligence to read and analyze MRI scans. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ ACTRIMS 2020 Review :18 My Interview with Professor Francisco Quintana 9:52
My Interview with Clinical Specialist Micki Maes 16:24
Share This Episode 22:08
Reminder...Please Donate to Walk MS 22:37
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Jon's WALK MS Fundraising Page
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Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Bonus Episode: ACTRIMS 2020
Hosted By: Jon Strum
Guests: Professor Francisco Quintana, Micki Maes
Tags: MS, MultipleSclerosis, MSResearch, ACTRIMS, MSSociety, RealTalkMS
Privacy Policy
We're just a week away from the National MS Society's Public Policy Conference in Washington, D.C. And my guest is Diane Kramer, an MS Activist from State College, Pennsylvania, who will be attending the Public Policy Conference for the first time. Diane has experienced some of the same obstacles and frustrations that so many people living with MS experience -- insurance companies preventing her from getting the disease-modifying therapy that her neurologist prescribed, having the high cost of her MS medication force her to make nearly impossible financial choices, even skipping treatment. But whether she's knocking on the doors of neurologists' offices in her area so that she can connect them with resources from the MS Society, or starting an MS support group in her community when she found there wasn't one, Diane is a force to be reckoned with. Jon also has some difficult news to share. And we'll tell you how you can support Jon in this year's Walk MS. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Greetings from the ACTRIMS Forum :22 Some Difficult News :58
You Can Support Jon in WALK MS 2:36
My Interview with Diane Kramer 3:58
Share This Episode 26:37
Reminder...Please Donate to Walk MS 27:02
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Just copy this link & paste it into your text or email: https://realtalkms.com/130
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Jon's WALK MS Fundraising Page
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Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 130
Hosted By: Jon Strum
Guests: Diane Kramer
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, MSPPC20, RealTalkMS
Privacy Policy
In just two weeks, the National MS Society is hosting its annual Public Policy Conference in Washington, D.C. The centerpiece of that conference is our Day On The Hill when 300 MS Activists meet with our Congressional Representatives and Senators to discuss the legislative issues that are most important to people affected by MS. My guest is Bari Talente, the Executive Vice President of Advocacy for the National MS Society and we're talking all about this year's Public Policy Conference and the value and importance of advocacy. We'll also let you know how and where to sign up for Discovering Life-Changing Treatments for Progressive MS, the global webcast from the International Progressive MS Alliance. (You have to hurry! It's happening in 2 days!) You'll hear about an encouraging study of the effectiveness of stem cell therapy for some people living with secondary progressive MS. We're also talking about why you might want to support Jon in this year's Walk MS. And you'll learn about a non-invasive breakthrough technology that provides a detailed assessment of the status of MS progression and the effectiveness of disease-modifying therapy...in 10 seconds. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Sharing Some Crazy Statistics :44 We're Just 2 Weeks Away From the Public Policy Conference 2:27
Register for the Global Webcast: Discovering Life-Changing Treatments for Progressive MS 3:39
You Can Support Jon in WALK MS 4:54
HSCT Shows Benefits in Some People with Secondary Progressive MS 6:23
New Eye-Tracking Tech Uses AI to Monitor MS 9:09
My Interview with Bari Talente 11:54
Share This Episode 26:03
Reminder...Please Donate to Walk MS 26:28
Download the RealTalk MS App 27:03
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Just copy this link & paste it into your text or email: https://realtalkms.com/129
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Jon's WALK MS Fundraising Page
Register for the International Progressive MS Alliance Global Webcast: Discovering Life-Changing Treatments for Progressive MS
Low-Intensity Lympho-Ablative Regimen Followed by Autologous Hematopoietic Stem Cell Transplantation in Severe Forms of Multiple Sclerosis: A MRI-Based Clinical Study
BEAT-MS Clinical Trial
C. Light Technologies
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Give RealTalk MS a Rating & Review
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RealTalk MS Episode 129
Hosted By: Jon Strum
Guests: Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, RealTalkMS
Privacy Policy
My guest is Dr. Riley Bove, and we're talking about some of the things you might want to consider when you're thinking about getting pregnant, some important things to consider when you are pregnant, some things to discuss when you and your doctor are planning your delivery, and things to be aware of following your pregnancy. We're also talking about the results of two different studies that underscore the important relationship between the gut and MS. We'll give you a few different opportunities to participate in MS research, and we'll remind you about why your participation is important. And we'll share the sobering results of a large study that serves to remind everyone why diagnosing and treating depression among people living with MS should be a priority. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Changes to Medicaid Could Impact Families Affected by MS 1:11 Study Shows Positive Effects of Probiotics in MS 5:04
Study Shows Reducing This Amino Acid in Your Diet Could Delay Onset & Progression of MS 7:17
Opportunities for You to Participate in MS Research 10:48
Study Shows People Living with MS at Higher Risk of Death by Suicide 14:13
My Interview with Dr. Riley Bove 17:26
Share This Episode 29:31
Download the RealTalk MS App 30:02
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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Jon's WALK MS Fundraising Page
EMD Serono & MyHealthTeams Family Planning Resource Center
STUDY: Immunomodulatory and Anti-Inflammatory Effects of Probiotics in Multiple Sclerosis: A Systematic Review
STUDY: Methionine Metabolism Shapes T Helper Cell Responses Through Regulation of Epigenetic Reprogramming
Participate in Research: Health Behaviors in Adults with MS Who Use Wheelchairs - Contact Stephanie Silveira, enrl@uabmc.edu or (205) 975-1306
Participate in Research: Health Beliefs & Physical Activity
Participate in Research: The iConquer MS Patient-Powered Research Database
STUDY: Association Between Neurological Disorders and Death by Suicide in Denmark
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Give RealTalk MS a Rating & Review
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RealTalk MS Episode 128
Hosted By: Jon Strum
Guests: Dr. Riley Bove
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Medicaid, RealTalkMS
Privacy Policy
This past year, a bill was introduced in the California State Assembly that would create more transparency among pharmaceutical companies and make more lower-cost generic drugs available to Californians by making it easier for the California Attorney General to prosecute pharmaceutical companies for so-called "pay for delay" deals. MS Activists in California talked to our state legislators, asking them to support this bill, known as AB 824, and on January 1st, California Governor Gavin Newsom signed AB 824 into law. My guest is the author of AB 824, California Assemblymember Jim Wood. We're talking with Assemblymember Wood about what it was like to guide a bill that the pharmaceutical industry came out against through the state legislature and see it signed into law. We'll share results of a new study that shows that undiagnosed and under-diagnosed depression is a serious problem that negatively impacts the quality of life among many older adults living with MS. We'll tell you about a U.S. Circuit Court of Appeals ruling that leaves the fate of the Affordable Care Act in the hands of the U.S. Supreme Court -- and what that means for people living with MS. And we'll tell you about Dr. Francisco Quintana, this year's recipient of the Barancik Prize for exceptional innovation and originality in MS research. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Where I'm Going to Be This Month :22 Can You Help Me Out? 2:14
Barancik Prize Awarded to Dr. Francisco Quintana 5:25
Untreated Depression Negatively Impacts Older Adults Living with MS 7:21
Judge Hands FDA a Loss on Stem Cell Clinics 10:59
Appeals Court Won't Review Affordable Care Act Decision 13:17
My Interview with California Assemblymember Jim Wood 17:20
Share This Episode 27:01
Download the RealTalk MS App 27:27
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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Jon's WALK MS Fundraising Page
STUDY: Under-Treated Depression Negatively Impacts Lifestyle Behaviors, Participation, and Health-Related Quality of Life Among Older People with Multiple Sclerosis
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RealTalk MS Episode 127
Hosted By: Jon Strum
Guests: California Assemblymember Jim Wood
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, RealTalkMS
Privacy Policy
Multiple studies show that early and ongoing treatment with disease-modifying therapy is the most effective way to slow MS progression, modify the course of the disease, and maintain optimal brain health. Yet, for many people living with MS, these life-changing treatments remain out of reach. The National MS Society has released the results of a new survey that demonstrates that this problem may be much larger and more serious than you may have imagined. My guests are Tim Coetzee, the Chief Advocacy, Research, and Services Officer, and Bari Talente, the Executive Vice President of Advocacy for the National MS Society, and we're talking about the barriers to accessing MS medications and what can be done to bring those barriers down. We're also talking about the U.S. Supreme Court's decision to reject a petition filed by 20 state attorneys general, the U.S. House of Representatives, and supported by the National MS Society and 23 other patient organizations, to issue an expedited ruling on the constitutionality of the Affordable Care Act. We'll tell you about a study that shows that mothers of children living with MS are experiencing significant levels of anxiety and mood disorders. We'll share some good news for people in Europe living with secondary progressive MS. We'll tell you where you can catch the replay of last week's International Progressive MS Alliance Managing Symptoms & Enhancing Well-Being in Progressive MS Facebook Live event. And we'll tell you how a group of insurance companies is banding together to lower the price of generic prescription medications. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Catch the Replay of the International Progressive MS Alliance Managing Symptoms & Enhancing Well-Being in Progressive MS Facebook Live Event 1:01 MS Society Joins Patient Organizations Commenting on Supreme Court Passing on ACA Ruling 2:04
New Study Signals Need for Attention to Mental Health Care in Mothers of Children with MS 5:56
Mayzent Approved for Secondary Progressive MS in Europe 8:04
Insurance Companies Unite to Make Cheaper Generics 8:49
My Interview with Tim Coetzee and Bari Talente 11:14
Share This Episode 21:31
Download the RealTalk MS App 21:57
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Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
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___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
New Survey Shows 40% of People with MS Alter or Stop Taking Medications Due to High Cost
National MS Society: Make MS Medications Accessible
REPLAY: Symptom Management & Well-Being in Progressive MS Facebook Live Event
Patient Groups Disappointed by Ongoing Uncertainty in Wake of Supreme Court's Decision Not to Expedite Health Care Case
STUDY: Increased Mental Health Care Use by Mothers of Children with Multiple Sclerosis
Kids Get MS Too: A Guide for Parents of a Child or Teen with MS
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Give RealTalk MS a Rating & Review
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RealTalk MS Episode 126
Hosted By: Jon Strum
Guests: Tim Coetzee and Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, PediatricMS, Mayzent, RealTalkMS
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Last week, the National MS Society convened the Pathways to Cures Think Tank. I think that we'll look back at this meeting as a historic moment when a flag was planted and intentions were declared. We've taken the first steps toward creating a global consensus for defining specific pathways to stop MS progression, restore lost function, and end MS. The Pathways to Cures Think Tank was an extraordinary event, and we're devoting this entire episode of RealTalk MS to hearing from some of the participants and sharing the highlights of the meeting. This is the episode of RealTalk MS that you don't want to miss. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ We're at the Pathways to Cures Think Tank :18 My Interview with Dr. Carol Whitacre 1:46
My Interview with Dr. Bruce Bebo 8:44
Why there's an "s" at the end of "Cure" 15:50
My Interview with Dr. Kassandra Munger 16:32
My Interview with Dr. Philip De Jager 25:48
My Thoughts on the Pathways to Cures Think Tank 35:34
Share This Episode 36:48
Download the RealTalk MS App 37:18
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Just copy this link & paste it into your text or email: https://realtalkms.com/125
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Register for the Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment Facebook Live Event
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RealTalk MS Episode 125
Hosted By: Jon Strum
Guests: Dr. Carol Whitacre, Dr. Bruce Bebo, Dr. Kassandra Munger, Dr. Philip De Jager
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, PathwaysToCures, RealTalkMS
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We're exploring the healing power of adventure. My guest is Brad Ludden, the founder of First Descents, a non-profit organization that, since 2001, has taken over 10,000 young adult oncology patients on more than 1,000 outdoor adventures that feature activities like rock-climbing, kayaking, and surfing. Last year, First Descents expanded their programming to include outdoor adventures designed for young adults living with MS. And every one of these adventures is offered at no cost to the participants.
We're also talking about the International Progressive MS Alliance's upcoming Facebook Live event, Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment. It takes place next week, and we'll tell you how you can register to be a part of it.
We're talking about a research team at the Mayo Clinic that discovered a molecule that serves as a "switch" for myelin repair.
You'll hear about a study that's going to compare the effectiveness of stem cell treatment with high-efficacy disease-modifying therapies for treating relapsing MS. And we'll tell you how you can register as a potential participant.
We have a lot to talk about! Are you ready for RealTalk MS??!
___________ Greetings from the Pathways to Cures Think Tank :22 My Shout-Out to the MS Society Southern California-Nevada Chapter's Emerging Leadership Board 1:14
Register for the International Progressive MS Alliance's FACEBOOK LIVE Event 3:14
California Is Launching Its Own Generic Prescription Drug Label 4:49
EMD Serono's MS-LINK & MyHealthTeams Launch a Family Planning Resource Center 7:48
BEAT-MS Study Will Compare Stem Cell Treatment with High-Efficacy Disease-Modifying Therapies 9:08
Mayo Clinic Team Discovers a Molecular Switch for Repairing Myelin 11:14
My Interview with Brad Ludden 12:50
Share This Episode 27:24
Download the RealTalk MS App 27:50
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
First Descents
Register for the Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment Facebook Live Event
EMD Serono & MyHealth Teams Family Planning Resource Center
BEAT-MS Clinical Trial
Blocking the Thrombin Receptor Promotes Repair of Demyelinated Lesions in the Adult Brain
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Give RealTalk MS a Rating & Review
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RealTalk MS Episode 124
Hosted By: Jon Strum
Guests: Brad Ludden
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, FirstDescents, MyMSTeam, MayoClinic, RealTalkMS
Privacy Policy
Access to MS symptom self-management care is extremely limited. That's why my guest, Dr. Anna Kratz, and her colleagues created My MS Toolkit -- a web-based, self-guided symptom self-care program designed especially for people with MS. (And it's FREE!) We're talking with Dr. Kratz about how My MS Toolkit was developed and what makes it such a powerful online tool for people living with MS.
We're also talking about the latest petitions filed with the Supreme Court in the battle over the Affordable Care Act (and why this is so vitally important to people affected by MS!). If you're using gabapentin (Neurontin) to manage MS pain, we'll tell you about the warning that was just issued by the FDA.
Yet another study gives us yet another reason to start disease-modifying therapy as soon as possible. And we'll explain why collecting real-world data about MS is so important, and what a team of MS experts is recommending to improve the process of real-world data collection and analysis.
We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Where I'll Be in January :27 National MS Society Joins 23 Other Patient Organizations in Requesting Supreme Court Expedites Its Review of the ACA 3:00
FDA Issues Warning About Gabapentinoids 6:51
Disease-Modifying Therapy Use Has Changed the 'Natural History' of Relapsing-Remitting MS 7:57
Paper Explores How Real-World Data Can Be Better Leveraged to Speed Solutions to People Living with MS 9:34
My Interview with Dr. Anna Kratz 15:04
Share This Episode 36:00
Download the RealTalk MS App 36:29
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Just copy this link & paste it into your text or email: http://realtalkms.com/123
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
My MS Toolkit
FDA Warns About Serious Breathing Problems when Gabapentin and Pregabalin Are Used With CNS Depressants or By Patients with Lung Problems
STUDY: Outcomes in a Modern Cohort of Treated Multiple Sclerosis Patients Followed from Diagnosis Up to 15 Years
Leveraging Real-World Data to Investigate Multiple Sclerosis Disease Behavior, Prognosis, and Treatment
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Give RealTalk MS a Rating & Review
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RealTalk MS Episode 123
Hosted By: Jon Strum
Guests: Dr. Anna Kratz
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Gabapentinoids, ACA, RealTalkMS
Privacy Policy
MS Warriors are those special individuals whose efforts on behalf of people affected by MS go above and beyond the norm to raise awareness, raise funds, and raise our spirits My guest this week is Marc Boyer. Marc biked more than 4,000 miles, from one end of Canada to the other, raising over $160,000 for the MS Society of Canada. Marc not only raised money that will fund important MS research, his coast-to-coast ride also raised MS awareness throughout Canada. We're also taking a look back at the MS-related legislative wins, losses, and draws that we faced in 2019. We're talking about gains in federal funding for MS research, first steps in trying to get a handle on the escalating cost of MS prescription medications, and some political outcomes that didn't go well for people living with MS and other chronic illnesses.
We have a lot to talk about! Are you ready for this holiday edition of RealTalk MS??! ___________ MS Advocacy: A 2019 Legislative Review 1:16 My Interview with Marc Boyer 19:56
Share This Episode 33:23
Download the RealTalk MS App 33:51
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Just copy this link & paste it into your text or email: http://realtalkms.com/122
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ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
See How Your U.S. Representative Voted for the Defense Bill (which included the MS Research Program funding)
See How Your U.S. Senators voted for the Defense Bill (which included the MS Research Program funding)
See How Your U.S. Representative Voted for the Health & Human Services Bill (which included all other funding for MS-related research and programs)
See How Your U.S. Senators voted for the Health & Human Services Bill (which included all other funding for MS-related research and programs)
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 122
Hosted By: Jon Strum
Guests: Marc Boyer
Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, MSSocietyCanada, RealTalkMS
Privacy Policy
In this episode of RealTalk MS, we're re-visiting my conversation from ECTRIMS 2019 with Dr. Bruce Bebo, the Executive Vice-President of Research at the National MS Society. This is one of my favorite conversations of the entire year, and you've made it this year's most downloaded and listened to RealTalk MS episode. We're also talking about a new report issued by RAND Europe, entitled Exploring the Societal Burden of Multiple Sclerosis: A Study Into the Non-Clinical Impact of the Disease, Including Changes with Progression. And if you have the RealTalk MS app installed on your iOS or Android smartphone or tablet (you'll find links below), you're going to receive this special report as Bonus Content.
We have a lot to talk about! Are you ready for this holiday edition of RealTalk MS??! ___________ Season's Greetings! :18 RAND Europe Report: Exploring the Societal Burden of Multiple Sclerosis :42
Dr. Bruce Bebo's Highlights of ECTRIMS 2019 3:03
Share This Episode 27:52
How to Download the RealTalk MS App 28:16
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Just copy this link & paste it into your text or email: http://realtalkms.com/121
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ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 121
Hosted By: Jon Strum
Guests: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, ectrimscongress, RealTalkMS
Privacy Policy
Is MS preventable? Is progressive MS modifiable? We'll tackle these questions and more with my guest, Professor Gavin Giovannoni. Professor Giovannoni is not only a leading academic neurologist based at Barts and The London School of Medicine and Dentistry, Queen Mary University London, he's also a prolific blogger, tweeter, speaker, author, and opinion leader. It's a conversation you don't want to miss! We're also taking a look back at the major MS news stories of 2019. We're talking about new disease-modifying therapies, stem cell therapy (both the legitimate and the less-than-legitimate variety), MS biomarkers, the skyrocketing cost of MS prescription medications (and what's being done about it), the nearly one million families living with MS in the United States, and more! We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Thank you! We're Trending On Apple Podcasts :22 A Look Back at the MS News of 2019 2:18
My Interview with Prof. Gavin Giovannoni 15:01
Share This Episode 37:16
Why You Should Download the RealTalk MS App This Week 37:44
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Just copy this link & paste it into your text or email: http://realtalkms.com/120
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
MS Brain Health
BARTS MS Blog
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 120
Hosted By: Jon Strum
Guests: Prof. Gavin Giovannoni
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, GavinGiovannoni, RealTalkMS
Privacy Policy
This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.
My guest is Cathy Chester, who is a paid spokesperson for the MS MindShift. Cathy has lived with relapsing-remitting multiple sclerosis since 1986 and knows that although she has MS, MS does not have her. Today, Cathy hopes to empower, educate and inspire others to live a rich, full life despite living with a disability.
We’ll be talking to Cathy about how your brain health may be impacting your relationships as well as advice on how to have meaningful relationships while balancing symptoms of MS. We’ll also talk about the importance of brain health and share some lifestyle tips on what people living with MS can do to keep their brain healthy.
To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com
What can you do when the MS medication you need can cost $80,000, $90,000 or even $100,000 a year, and you don't have health insurance? Or you have health insurance, but your insurance company won't approve the specific disease-modifying therapy that your neurologist thinks will be best for you? My guest is Lisa Aquillano, a Clinical Pharmacy Specialist in Multiple Sclerosis at Emory University Hospital in Atlanta, Georgia. And we're talking about specific steps that you can take to overcome the obstacles standing in the way of gaining access to your MS disease-modifying therapy.
We're also talking about a remarkable program for people living with MS and their care partners. But the window to register for this program is just 24 hours long! And it's coming up in 2 days! We'll tell you all about the program and let you know exactly how to register. We'll tell you about what may be an important new discovery of a molecule that completely resolves MS in mice. We'll also tell you about a study that shows that people living with MS who are also dealing with depression are much more likely to develop debilitating disability sooner. And we'll tell you how and why Google is cracking down on shady stem cell clinic ads. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ CAN-DO Program: 24-Hour Registration Opens Dec. 12 2:15 MicroRNA Resolves Mouse Model of MS 5:39
FDA Approves 3 Generics for Gilenya 8:06
Depressed MS Patients Suffer More Serious Physical Disability Earlier 9:39
Google Cracks Down on Stem Cell Clinic Ads 12:25
My Interview with Lisa Aquillano 14:48
Share This Episode 32:19
How to Subscribe to RealTalk MS, Download the RealTalk MS App, and Listen with Alexa 32:43
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Just copy this link & paste it into your text or email: http://realtalkms.com/119
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
The Can-Do Program
STUDY: Oral Administration of miR-30d from Feces of MS Patients Suppresses MS-Like Symptoms in Mice By Expanding Akkermansia Muciniphila
STUDY: Diability Worsening Among Persons with Multiple Sclerosis and Depression: A Swedish Cohort Study
Give RealTalk MS a Rating & Review
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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RealTalk MS Episode 119
Hosted By: Jon Strum
Guests: Lisa Aquillano, PharmD, BCPS, MSCS
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, CanDoMS, Gilenya, Depression, Stemcells, RealTalkMS
Privacy Policy
This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.
My guest is Jodi Johnson, who is a paid spokesperson for the MS MindShift. Jodi has been living with MS for almost 12 years after having been diagnosed in January of 2008. Since her diagnosis, Jodi has shifted her perspective on the disease to focus on what she can do, instead of what she cannot.
We’ll be talking to Jodi about coping with MS through personal growth and resilience and how different lifestyle choices can have an impact on brain health. She’ll also give us a look into her daily lifestyle routine which helps keep her brain healthy.
To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com
My guest is Stubhy Pandav, the lead singer of Lucky Boys Confusion and The Hoodie Life. Last year, Stubhy was diagnosed with MS. Then, Stubhy's insurance company told him that he couldn't start the disease-modifying therapy that his neurologist had prescribed. We'll talk with Stubhy about how he's managed to navigate this first year since his MS diagnosis, and we'll also talk with him about MS Sucks: Singing for a Cure, a benefit concert that's raising funds for the Accelerated Cure Project for MS. We're also talking about the warning that the FDA just issued about CBD. And we'll tell you why two Harvard neurologists have announced that it's time to re-think how neurologists treat MS. If you've wondered why the cost of MS medications seems to be constantly rising, we'll tell you what a research team from Oregon State University discovered. And we'll tell you where you can sign up for the upcoming webinar, "Debunking Diet Myths." We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Home for the Holidays :22 FDA Issues Warning About CBD 2:29
Harvard Neurologists Say It's Time to Re-Think MS Treatment Approach 5:39
What Really Drives Up the Price of MS Medications? 8:29
Webinar: Debunking Diet Myths 13:12
My Interview with Stubhy Pandav 14:48
Share This Episode 31:46
How to Subscribe to RealTalk MS, Download the RealTalk MS App, and Listen with Alexa 32:12
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Just copy this link & paste it into your text or email: https://realtalkms.com/118
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
MS Sucks: Singing For a Cure
RealTalk MS Episode 74: Dr. Aaron Boster & The Induction vs Escalation MS Treatment Philosophy
An Argument for Broad Use of High Efficacy Treatments in Early Multiple Sclerosis
Qualitative Study on the Price of Drugs for Multiple Sclerosis: Gaming the System
Can-Do MS & National MS Society Webinar Registration: Debunking Diet Myths
Give RealTalk MS a Rating & Review
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 118
Hosted By: Jon Strum
Guests: Stubhy Pandav
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, CBD, Cannabis, RealTalkMS
Privacy Policy
November is National Family Caregiver Month, and while I was at the 4th Annual National Caregiving Conference in Chicago, I met this week's guest, Caregiver Strategist Penny Patnaude. Penny and I talked about some of the things that caregivers want to be thinking about in planning their own strategy for providing great care to their loved one without losing themselves in the process. I'll also introduce you to Dr. Lindsey Knowles, a young MS rehabilitation researcher who will give us an insider's look at what the Tykeson Fellows Conference is all about, and why it's so important for the future of MS research. We're also talking about the cannabis-based treatment for MS spasticity that was approved in the U.K. You'll hear about last week's International Progressive MS Alliance meeting in Amsterdam, and we'll tell you about an investigational therapy that can reset the immune system in the mouse model of MS in a single dose. We'll remind you that if you're a young adult, between 18 and 45 years old, First Descents is offering you a week-long ski trip to Crested Butte, Colorado. And it's FREE! (Don't worry, we'll tell you how and where to begin the application process!) You'll hear about the research team in Montreal that may have found a way to stop MS progression. And we'll tell you how easy it is to share this episode of RealTalk MS with family and friends! We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Thanks for all the kind words! :22 The National MS Society & RealTalk MS Partnership :52
Join the Conversation! Get In Touch with RealTalk MS 2:21
The Progressive MS Alliance Meeting in Amsterdam 3:32
The Tykeson Fellows Conference & My Conversation with Dr. Lindsey Knowles 5:26
Sativex Approved in U.K. for MS Spasticity 11:12
Single Dose of Investigational Therapy Resets the Immune System in Mouse-Model of MS 13:19
First Descents Offers a FREE Ski Trip to Crested Butte to Young Adults Living with MS 15:39
Canadian Research Team Says They May Be Able to Stop MS Progression 17:51
My Interview with Caregiver Strategist Penny Patnaude 19:51
Share This Episode 27:11
How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 27:36
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https://realtalkms.com/117
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
The National MS Society & RealTalk MS Announce a Partnership
The International Progressive MS Alliance
Administration of a CD45 Antibody Drug Conjugate as a Novel, Targeted Approach to Achieve Immune System Reset: A Single Dose of CD45-targeted ADC Safely Conditions for Autologous Transplant and Ameliorates Disease in Multiple Models of Immune Disease
First Descents Skiing at Crested Butte
Activated Leukocyte Cell Adhesion Molecule Regulates B Lymphocyte Migration Across Central Nervous System Barriers
The Caregiver Strategist
Give RealTalk MS a Rating & Review
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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RealTalk MS Episode 117
Hosted By: Jon Strum
Guests: Penny Patnaude
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Caregiving, Sativex, Stemcells, FirstDescents, RealTalkMS
Privacy Policy
This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.
My guest is Caroline Craven, who is a paid spokesperson for the MS MindShift. Caroline could not walk or see without assistance when she was first diagnosed with multiple sclerosis in 2001. Today she is thriving and shares her personal experiences, life hacks, and the holistic lifestyle choices that she has made to help manage her MS symptoms, via her blog.
We’ll be discussing how Caroline pursues positivity and her personal passions while living with MS, in order to keep her brain active and engaged. We’ll also be discussing the lifestyle choices she has made to help maintain her brain health.
To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com.
Last week, the National MS Society and RealTalk MS announced a new partnership. And we're definitely talking about it! My guest is Dr. Soha Saleh, a research scientist at Kessler Foundation's Center for Mobility and Rehabilitation Engineering Research, and we're talking about her innovative research in understanding how MS impacts dual-tasking -- something that all of us do, all day long. We'll tell you about the newly announced Weill Neurohub, and why that's such promising news for people affected by MS. We're also talking about the price of Vumerity, the new oral disease-modifying therapy, and suggesting some of the things to keep in mind as we consider steps to ensure that everyone living with MS has access to affordable prescription medications. And we'll tell you about the alternative to EDSS that's been proposed by the Multiple Sclerosis Outcome Assessments Consortium. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ A BIG Announcement About RealTalk MS! 1:19 Introducing the Weill Neurohub 3:36
The Price of Vumerity 5:47
An Alternative to EDSS Has Been Proposed 9:58
My Interview with Dr. Soha Saleh 13:49
How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 29:31
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Just copy this link & paste it into your text or email: https://realtalkms.com/116
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
The National MS Society & RealTalk MS Announce a Partnership
The Weill Neurohub
Evaluation of Multiple Sclerosis Disability Outcome Measures Using Pooled Clinical Trial Data
The Kessler Foundation Center for Mobility and Rehabilitation Engineering Research
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RealTalk MS Episode 116
Hosted By: Jon Strum
Guests: Dr. Soha Saleh
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, KesslerFdn, RealTalkMS
Privacy Policy
My guest this week is Dr. Mary Bailey, a neurologist specializing in MS care at the Mandell Center for Multiple Sclerosis in Hartford, Connecticut, and we're talking about some of the changes that occur as relapsing-remitting MS transitions to secondary progressive MS. Since about 80% of the people living with relapsing-remitting MS will experience that transition to secondary progressive MS, I think it's an important conversation to have. Since yesterday was Veterans Day in the United States, we're talking about the connection between Veterans and MS and the innovative MS research being funded by the Department of Defense. We've received some listener requests about this, so we're revisiting our conversation with Dr. Mitzi Joi Williams about minority participation in MS research. We'll also point you toward a replay of a webinar that Dr. Williams hosted about this important topic. We'll give you the details about a First Descents ski trip to Crested Butte, Colorado that's been created specifically for young adults who are living with MS. And it's FREE! (And, of course, we'll tell you where and how to begin the registration process!) You'll find out where to catch the video replay of Progress in MS Research Live Update 2019 that was live-streamed last week by MS Research Australia. The program features 4 outstanding MS experts and a LOT of great information! November is National Family Caregivers Month, and we're talking about a very worthwhile short video that gives us what I think is a very authentic peek at some of the things that couples affected by MS go through every day. And it also provides some excellent tips on how both partners can best manage their relationship when one of them becomes the other's caregiver. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Greetings from the 4th Annual National Caregiving Conference :40 Looking Ahead to the National MS Society Leadership Conference 1:09
MS & U.S. Military Veterans 2:43
Video Offers Care Partner Tips & Inspiration 4:40
First Descents is Offering a FREE ski trip to Colorado to Young Adults Living with MS 5:33
Catch the Progress in MS Research Update 2019 Video Replay 7:32
Minority Participation in MS Research with Dr. Mitzi Joi Williams 8:41
My Interview with Dr. Mary Bailey 18:23
How You Can Share This Episode of RealTalk MS 26:37
How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 27:09
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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U.S. Military Veterans & MS
VIDEO: MS and Care Partnership -- Tips & Inspiration
First Descents Skiing at Crested Butte
VIDEO REPLAY: Progress in MS Research Live Update 2019
VIDEO: Addressing Common Misconceptions About Research and Clinical Trials in Minority Groups
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RealTalk MS Episode 115
Hosted By: Jon Strum
Guests: Dr. Mary Bailey
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS
Privacy Policy
This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.
My guest is Yvonne DeSousa, who is a paid spokesperson for the MS MindShift. Yvonne was diagnosed with MS in 2009. She quickly discovered that humor was able to help settle her fears and act as a release. Years later, Yvonne has continued using humor to not only improve her mood, but she’s also worked to spread laughter and joy to the rest of the MS community through her blog and her book.
In this episode, Yvonne shares how she adopted a comedic outlook on MS and has been able to introduce different lifestyle choices into her everyday lifestyle to help maintain a healthy brain and a positive attitude. We’re also discussing ways people living with MS can use laughter as a coping mechanism, along with shifting their focus towards brain health.
To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com
My guest this week is Dr. Silvana Costa, a research scientist in the Neuropsychology and Neuroscience Center at the Kessler Foundation. Dr. Costa's work is focused on cognitive impairment in MS, specifically, information processing speed, which is something that people living with MS often have to deal with. We'll talk with Dr. Costa about some of her specific research, along with a promising intervention designed to improve cognitive processing speed for people living with MS. We're also talking about the FDA approval of Vumerity, an oral disease-modifying therapy for relapsing-remitting MS and active secondary progressive MS. We'll tell you about the stem cell therapy that was just approved for people with MS in Scotland. The Patient-Centered Outcomes Research Institute is an important part of the Affordable Care Act. It's currently authorized to operate for just 16 more days. You'll learn about the bipartisan effort in the U.S. Congress to re-authorize PCORI, and why that benefits people affected by MS. November is National Family Caregivers Month, and we're talking about what that means, why it's important, and why MS caregivers need to #BeCareCurious. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Let's Meet Up! Where I'll Be in November :22 Vumerity Receives FDA Approval 3:44
Patient-Centered Outcomes Research Institute (PCORI) Bipartisan Re-Authorization Bill 4:34
Hematopoietic Stem Cell Transplantation (HSCT) Approved for MS in Scotland 8:38
November is National Family Caregivers Month 10:42
My Interview with Dr. Silvana Costa 15:53
How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 24:19
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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Kessler Foundation
Patient-Centered Outcomes Research Institute
iConquer MS
Caregiver Action Network -- National Family Caregivers Month
Give RealTalk MS a Rating & Review
Download the RealTalk MS App for iOS
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RealTalk MS Episode 114
Hosted By: Jon Strum
Guests: Dr. Silvana Costa
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, PCORI, stemcells, BeCareCurious, KesslerFdn, RealTalkMS
My guest this week is TV personality, Montel Williams. Since receiving his MS diagnosis in 1999, Montel has been a highly visible advocate for people living with MS. We're talking to Montel about his initial reaction to his own MS diagnosis, and what advice he would give to someone who was diagnosed with MS today (HINT: it's great advice!). We'll also talk to Montel about My MS Second Act, a new initiative that he's helping to launch and that you can get involved in. We're also talking about the National MS Society's $14.6 million dollar investment in 43 new MS research projects. We'll tell you about a new study that focuses on how and when people living with MS consider reducing their hours at work or even leaving the workforce. You'll hear about an MS research update featuring 4 renowned MS experts that will be live-streamed later this week. We're talking about the upcoming MS Summit on Nov. 9th in Chicago. And we'll tell you about a great one-minute animation about MS and self-esteem from the MS International Federation. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Montel Williams Helps Launch My MS Second Act :22 The National MS Society Invests $14.6 Million in 43 New MS Research Projects 1:22
Study Focuses on How Aging Impacts Employment for People Living with MS 4:30
MS Research Australia to Live-Stream MS Research Update Live 2019 8:38
In Chicago on Nov 9th? Don't Miss the MS Summit 10:18
MSIF Launches Animated Message About Self-Esteem & MS 11:35
My Interview with Montel Williams 13:15
How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen on with Alexa 25:22
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
MS Society Commits $14.6 Million for 43 New MS Research Projects
STUDY: Unemployment in Multiple Sclerosis Across the Ages: How Factors of Unemployment Differ Among the Decades of Life
Register for Progress in MS Research Live Update 2019
Register to attend the 2019 Multiple Sclerosis Summit
MSIF Animation About Dealing with Low Self-Esteem & MS
My MS Second Act Digital Storytelling Kit
Talk SPMS on Facebook
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RealTalk MS Episode 113
Hosted By: Jon Strum
Guests: Montel Williams
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, StopMS, mssocietyuk, MSIntFederation, MSAssocKe, Esclerosiseme, RealTalkMS
This special episode of RealTalk MS is sponsored by Celgene and the MS MindShift initiative, which aims to educate about the important role the brain plays in MS.
My guest is Ashley Ringstaff, who is a paid spokesperson for the MS MindShift. Ashley was diagnosed with relapsing-remitting MS at the age of 22. Many of us know that MS can be very unpredictable – never knowing what symptoms you’ll have to deal with day-to-day. This can lead to frustration for many people living with the disease. Ashley doesn’t let this frustration get in the way of living her life to the fullest, especially when it comes to being the mother of two boys.
We’ll be discussing what it was like being diagnosed while caring for young children, and the different lifestyle choices that Ashley has adopted to keep herself stress and frustration-free throughout her MS journey. We’ll also talk about the importance of brain health and share some tips on what people living with MS can do to keep their brain healthy.
To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com.
I'm back from attending the MS International Federation's People With MS Forum in Athens, Greece, and it was a remarkable few days spent with some truly remarkable people. In this episode of RealTalk MS, you'll meet two of those remarkable people. First, we'll talk with Dr. Laura Musambayi, the founder of the MS Association of Kenya. Dr. Musambayi will share her experiences in a country of 50 million people, with just 20 neurologists, and no access to disease-modifying therapy. Then, you'll meet Gabriela Hidalgo, a Project Manager at Esclerosis Multiple España, who will tell us about a very successful program designed to reduce isolation and depression and re-connect people affected by MS with their lives. We're also talking about an article that got my attention last week. Professor Alan Thompson wrote that We Can Stop MS -- And This Is How. (HINT: He's 100% right!) We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Reporting Back from the MSIF People with MS Forum :22 We Can Stop MS -- And This Is How 2:15
My Conversation with Dr. Laura Musambayi 9:19
My Conversation with Gabriela Hidalgo 18:03
Subscribe to RealTalk MS 28:47
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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MS International Federation
We Can Stop Multiple Sclerosis -- And This Is How
Donate Online to the National MS Society
Donate Online to the UK MS Society's #StopMS Campaign
Multiple Sclerosis Association of Kenya
Esclerosis Multiple España
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Download the RealTalk MS App for iOS
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RealTalk MS Episode 112
Hosted By: Jon Strum
Guests: Dr. Laura Musambayi and Gabriela Hidalgo
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, StopMS, mssocietyuk, MSIntFederation, MSAssocKe, Esclerosiseme, RealTalkMS
For almost 20 years, the CLIMB Study has been following thousands of MS patients, discovering so many aspects of multiple sclerosis and documenting how the disease changes over time. My guest is Dr. Tanuja Chitnis, Director of the CLIMB Study, Director of the Partners Pediatric Multiple Sclerosis Center at MassGeneral Hospital for Children, as well as the Director of the Translational Neuroimmunology Research Center at Brigham and Women's Hospital. We're also talking about an emerging topic that will continue to grow in importance and impact -- aging and MS. We're taking a deep dive into new changes in Medicare and how these changes will affect people living with MS. We'll tell you about a study that's going to evaluate how different types of exercise impact specific MS symptoms. And if you're living with MS in Canada, we'll remind you of what you have to do before you vote next week. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ What I'll Be Talking About at the MSIF Forum :22 Aging with MS 1:26
A Deep Dive Into New Improvements to Medicare & How They Will Affect People Living with MS 5:05
The MS Society of Canada's #MakeMSMatter Campaign 14:06
Studying Exercise & Its Effect on Specific MS Symptoms 15:14
My Interview with Dr. Tanuja Chitnis 17:55
Subscribe to RealTalk MS 29:46
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
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The CLIMB Study
MS Society of Canada's #MakeMSMatter Campaign
University of Washington Clinical Trial testing 2 non-pharmacological approaches to managing MS-related pain delivered via online video conference.
Email: msadapt@uw.edu Phone: (855) 320-8230 Kessler Foundation MS Research
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RealTalk MS Episode 111
Hosted By: Jon Strum
Guest: Dr. Tanuja Chitnis
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, KesslerFdn, MakeMSMatter, RealTalkMS
When you're living with MS, it can feel as though you're taking a few extra things with you when you go to work. For instance, if you haven't told your employer that you've been diagnosed with MS, you're taking along the extra burden of having to keep a secret. You might be trying your best to manage your MS symptoms on the job, dealing with things like fatigue, vision problems, and even physical balance. During the workday, all of these things -- these "extra burdens" -- get piled right on top of all the other work-related stresses that you face every day. It's a lot to have to carry. My guest is Dr. Lauren Strober, a Senior Research Scientist at the Center for Neuropsychology & Neuroscience Research and a staff neuropsychologist at the Kessler Institute of Rehabilitation. Among her research projects, Dr. Strober has taken a close look at how people living with MS cope with work-related stress. We'll also take you through the dangers of surprise billing, and explain how you could end up with thousands of dollars in medical expenses that you never saw coming. We'll tell you about a couple of outstanding FREE events that you'll want to attend. You'll find out about the MS Society of Canada's #MakeMSMatter campaign. And Peer Baneke, the CEO of the MS International Federation will walk us through the newly announced Patient-Reported Outcomes Initiative for MS. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ This is the Danger of Surprise Billing 1:30 CEO of the MS International Federation, Peer Baneke, Discusses the Patient-Reported Outcomes Initiative for MS 6:51
The MS Summit in Chicago on 11/09 13:38
Music to Cure MS Concert in Boston on 10/27 14:54
The MS Society of Canada's #MakeMSMatter Campaign 16:39
My Interview with Dr. Lauren Strober 19:10
Subscribe to RealTalk MS 32:47
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Kessler Foundation MS Research
Register to Attend the 2019 Multiple Sclerosis Summit
Music to Cure MS
Donate to the Accelerated Cure Project for MS
MS Society of Canada's #MakeMSMatter Campaign
Give RealTalk MS a Rating & Review
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 110
Hosted By: Jon Strum
Guest: Dr. Lauren Strober
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, KesslerFdn, MakeMSMatter, AcceleratedCure, RealTalkMS
I imagine everyone involved in MS research has their own reasons that make it important to them. My guest this week is Dr. Anisha Doshi, and Dr. Doshi's reasons are personal and powerful. Dr. Doshi will also update us on her current research project, and we'll talk with Dr. Doshi about the path that women face as they pursue a career in Neurology. You'll also hear Atara Biotherapeutics Chief Medical Officer Dr. AJ Joshi discuss Atara's clinical trial aimed at mitigating MS by using lab-engineered T-cells to attack B-cells carrying the Epstein-Barr Virus. We'll tell you about another newly announced clinical trial that's designed to see whether a probiotic will alter your gut bacteria so that it impacts your immune system and helps manage MS. And we'll share the results of the Global vsMS™ Survey of over 1,000 people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ National MS Society's Houston On The Move Luncheon Recap :22 Where I'll Be in October 1:46
ExeGi Pharma Launches Clinical Trial Testing Probiotic 4:04
Global vsMS™ Survey Results Announced 5:41
Atara Biotherapeutics' Chief Medical Officer, Dr. AJ Joshi, Discusses Their Cell Therapy Designed to Impact MS By Attacking the Epstein-Barr Virus 8:14
My Interview with Dr. Anisha Doshi 16:22
Subscribe to RealTalk MS 25:59
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Multiple Sclerosis Impact on Daily Activities, Emotional Well-Being, and Relationships: The Global vsMS™ Survey
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RealTalk MS Episode 109
Hosted By: Jon Strum
Guest: Dr. Anisha Doshi
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, RealTalkMS
Sometimes, you can just look at someone and know how they're feeling. Our ability to "read people" is called social cognition. And we're learning that people living with MS can lose their social cognition skills, making every face-to-face interaction more difficult. My guest is Dr. Helen Genova, the Assistant Director of the Kessler Foundation's Center for Neuropsychology and Neuroscience Research, the Director of the Social Cognition and Neuroscience Laboratory at the Kessler Foundation, and an expert in social cognition. Today is National Voter Registration Day, and we'll remind you about why that should be important to everyone affected by MS or any other chronic illness. We're talking about why the FTC is clamping down on the claims that some companies are making about their CBD products. We'll tell you about the $19 million dollars that J.K. Rowling donated to MS research. And we'll let you know where to sign up for this Thursday's Pathways to a Cure Facebook Live event. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ It's Our Birthday! :30 Give RealTalk MS a Rating & Review 1:35
Today is National Voter Registration Day & Why That's Important if You're Living with MS 2:40
FTC Clamps Down on CBD Claims 5:55
J.K. Rowling Donates $19 Million to MS Research 9:00
Register for MS Society's Pathways to a Cure Facebook Live 10:04
My Interview with Dr. Helen Genova 10:58
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
National Voter Registration Day: Register To Vote
Pathways to a Cure Facebook Live Event Registration
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Download the RealTalk MS App for Android
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RealTalk MS Episode 108
Hosted By: Jon Strum
Guest: Dr. Helen Genova
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, KesslerFdn, MSActivist, jk_rowling, RealTalkMS
Being diagnosed with multiple sclerosis means learning to live with a whole new set of challenges. Rising to meet those challenges and learning how to thrive in spite of those challenges is called resilience. But resilience isn't something that you're necessarily born with. Just like a muscle, resilience is something that you can choose to develop. My guest, Dr. Brandon Beaber, specializes in treating people living with MS and he's the author of Resilience in the Face of Multiple Sclerosis, a book that profiles some of his patients who have demonstrated great resilience in the face of MS and provides evidence-based tools on how you can develop your personal resilience. I see it as a how-to guide for living better with MS. And we'll tell you how you can get your free copy! We're also talking about why National Voter Registration Day should be important to everyone affected by MS or any other chronic illness. And we'll tell you where to sign up for the MS Society's upcoming Facebook Live workshop. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ The Progressive MS Alliance at the Ambassadors Ball :22 Daily Updates from ECTRIMS are Available for Binge-Listening 1:24
Presenting the Case for Adopting the Caregiver Protocol at Stanford Medicine X 1:53
National Voter Registration Day is 9/24...Why That's Important if You're Living with MS 5:26
Register for MS Society's Pathways to a Cure Facebook Live 7:02
Resilience In the Face of Multiple Sclerosis: My Interview with Author Dr. Brandon Beaber 8:16
Subscribe to RealTalk MS or Just Ask Alexa 22:34
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Get Your Free Copy of Resilience in the Face of Multiple Sclerosis by Tweeting Your Request to Dr. Brandon Beaber -- @Brandon_Beaber
Give RealTalk MS a Rating & Review
ECTRIMS 2019 Day 1 Update
ECTRIMS 2019 Day 2 Update
ECTRIMS 2019 Day 3 Update
Stanford Medicine X
National Voter Registration Day: Register To Vote
Join the National MS Society's MS Activist Network
Pathways to a Cure Facebook Live Event Registration
Give RealTalk MS a Rating & Review
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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RealTalk MS Episode 107
Hosted By: Jon Strum
Guest: Dr. Brandon Beaber
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, ECTRIMS2019, Brandon_Beaber, RealTalkMS
Welcome to a special episode of RealTalk MS coming to you from Day Three of ECTRIMS 2019 in Stockholm, Sweden. This final day at ECTRIMS has become my favorite day of the conference because it's the day that I get to sit down with Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society, and get his perspective on the highlights of the entire conference. We're talking about new Phase 3 clinical trial outcomes, research that shows that lifestyle choices can impact the course and severity of MS, the importance of beginning disease-modifying therapy within 5 years of being diagnosed with MS, and how artificial intelligence is ushering in the age of personalized medicine. We have a lot to talk about. Welcome to ECTRIMS 2019! ___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
ECTRIMS 2019 Scientific Programme
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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RealTalk MS ECTRIMS Day 3
Hosted By: Jon StrumGuest: Dr. Bruce Bebo
Tags: MS, MultipleSclerosis, MSsociety, ECTRIMS2019, EMDSerono, RealTalkMS
Welcome to a special episode of RealTalk MS coming to you from Day Two of ECTRIMS 2019 in Stockholm, Sweden. ECTRIMS is an acronym that stands for the European Conference for Treatment & Research in Multiple Sclerosis, and this annual scientific congress is the largest MS research conference in the world. There are over 9,000 attendees here from more than 100 different countries to share new information, hear research updates, and get face to face with the leading MS researchers in the world. We're talking about stem cell therapy, the long-term outcomes of MS, new data about Ocrevus, the importance of managing comorbidities, and a new global initiative that puts the voice of people living with MS at the center of MS research and MS care. We have a lot to talk about. Welcome to ECTRIMS 2019! ___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
ECTRIMS 2019 Scientific Programme
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS ECTRIMS Day 2
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, ECTRIMS2019, EMDSerono, Stemcells, PROMS, RealTalkMS
Welcome to a special episode of RealTalk MS coming to you from ECTRIMS 2019 in Stockholm, Sweden. ECTRIMS is an acronym that stands for the European Conference for Treatment & Research in Multiple Sclerosis, and this annual scientific congress is the largest MS research conference in the world. There are over 9,000 attendees here from more than 100 different countries to share new information, hear research updates, and get face to face with the leading MS researchers in the world. We're talking about some of the announcements that we expect to hear from some of the pharmaceutical companies in attendance. And we'll also tell you about a session that you'll be able to catch on a live webcast tomorrow morning. We have a lot to talk about. Welcome to ECTRIMS 2019! ___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Give RealTalk MS a Rating & Review
ECTRIMS 2019 Scientific Programme
Live Webcast from ECTRIMS Tomorrow, 5:45 AM EST
Download the RealTalk MS App for iOS
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RealTalk MS ECTRIMS Day 1
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, ECTRIMS2019, EMDSerono, Roche, BrainstormCell, RealTalkMS
This week, we're talking about palliative care for MS. It's a topic that a lot of people living with MS still don't know enough about, but palliative care can offer real benefits in attaining the best overall quality of life.
Joining me in discussing palliative care is my guest, Cherie Binns. Cherie was diagnosed with relapsing-remitting MS in 1994. She's been a Registered Nurse for 45 years, and Cherie is also an Internationally Certified MS Nurse. Cherie serves as the co-chair of the iConquerMS Research committee, and she regularly presents programs on living well with MS.
We'll also remind you that beginning tomorrow, you can listen to daily episodes of RealTalk MS directly from ECTRIMS 2019 in Stockholm, Sweden. I'll do my best to keep you updated on the announcements being made, the presentations being given, and the news coming out of the largest MS research conference in the world. We'll even tell you how you can catch a couple of sessions that will be webcast live from ECTRIMS 2019.
We have a lot to talk about! Are you ready for RealTalk MS??! ___________ The Ambassadors Ball Is Happening Tonight! :22 Beginning Tomorrow: Special RealTalk MS Episodes from ECTRIMS 2019 1:26
Catch Sessions from ECTRIMS on the Live Webcast 1:57
Palliative Care for MS with Cherie Binns, RN, MSCN 3:09
Download the RealTalk MS App 23:16
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Email: jon@realtalkms.comPhone: (310) 526-2283
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Live Webcasts from ECTRIMS 2019
National MS Society MS Navigators
GetPalliativeCare.org
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RealTalk MS Episode 106
Hosted By: Jon Strum
Guest: Cherie Binns, RN, MSCN
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, PalliativeCare, ECTRIMS2019, RealTalkMS
Five years ago, James Beard Award-winning chef Chris Shepherd decided to hold a barbecue event in his restaurant's parking lot, to raise money for the National MS Society. Today, the Southern Smoke Festival has grown into the largest 3rd party MS Society fundraising event in the United States, and with the 5th Annual Southern Smoke Festival just a few weeks away, we're talking with Chris about how this event got its start, and how it's grown to be one of the most noteworthy culinary events in the country. We're also talking about the new vaccination guidelines (including flu shots!) that were just published by the American Academy of Neurology for people living with MS. We'll tell you about a study that gives you one more reason to start disease-modifying therapy early...and stay on it! We'll also tell you about a study that shows the cost of MS disease-modifying therapy has increased 7X over just 10 years for Medicare patients. And we've found one more study that demonstrates how people with more advanced progressive MS can still benefit from physical rehabilitation. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Where You Can Find Me in September :32 American Academy of Neurology Issues Vaccination Guidelines for People Living with MS 4:39
The Long-Term Effects of Disease-Modifying Therapy 6:15
DMT Costs Increase 7X for Medicare Patients 7:49
Upper-Limb Task-Oriented Rehab Shows Benefits for People Living with Progressive MS 11:56
My Interview with Chris Shepherd 15:01
Subscribe to RealTalk MS or Just Ask Alexa 27:13
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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Southern Smoke Festival
Practice Guideline Update Summary: Vaccine-Preventable Infections and Immunization in Multiple Sclerosis -- Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology
The Long-Term Effects of Disease-Modifying Therapies on Disability in People Living with Multiple Sclerosis: A Systematic Review and Meta-Analysis
Trends in Prices, Market Share, and Spending on Self-Administered Disease-Modifying Therapies for Multiple Sclerosis in Medicare Part D
Preserved Brain Functional Plasticity After Upper Limb Task-Oriented Rehabilitation in Progressive Multiple Sclerosis
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RealTalk MS Episode 105
Hosted By: Jon Strum
Guest: Chris Shepherd
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, SouthernSmokeTX, RealTalkMS
Fatigue isn't only a common symptom of MS; it's also one of the most disruptive symptoms of MS. It's hard to be out living life when you're trying to overcome that feeling of just not having any gas left in the tank. My guest is Dr. Ekaterina Dobryakova, a research scientist at the Kessler Foundation's Center for Traumatic Brain Injury Research, where she conducts research in cognitive dysfunction caused by traumatic brain injury and multiple sclerosis. Dr. Dobryakova's research has shown that there may be a behavioral intervention -- a treatment that doesn't involve any drugs -- that can effectively reduce MS fatigue. We're also talking about the letter that former NBA championship-winning head coach David Blatt wrote, announcing his primary progressive MS diagnosis. We'll tell you about a discovery at UCLA that may explain why women are three times more likely than men to develop MS. And we'll tell you how you can join more than 4,600 people living with MS and be a part of an epic MS study from the comfort of your own home. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Coach David Blatt's Letter About His Primary Progressive MS Diagnosis 1:15 X-Chromosome Gene May Explain Why Women Are Diagnosed With MS 3 Times More Often Than Men 8:29
Your Opportunity to Participate in the Slifka Study 11:54
My Interview with Dr. Ekaterina Dobryakova 14:15
Subscribe to RealTalk MS or Just Ask Alexa 29:14
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**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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Kessler Foundation
STUDY: The X-Linked Histone Demethylase Kdm6a in CD4+ T Lymphocytes Modulates Autoimmunity
Participate in the Slifka Study
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RealTalk MS Episode 104
Hosted By: Jon Strum
Guest: Dr. Ekaterina Dobryakova
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, KesslerFDN, Coach_Blatt, UCLA, RealTalkMS
My guest is Kyra Millich, who, until October of 2013, was a consumer protection litigator in San Francisco, recently married, and already thinking about planning a family. And that's when she received her MS diagnosis. I don't know if Kyra would say that her diagnosis changed her life, or clarified it, but I found Kyra's MS journey to be interesting, inspirational, and instructional. And I think you will too. We're also talking about a breakthrough study in which a research team was able to reverse aging in some very specific brain stem cells in rats (and we'll tell you why that's particularly important to people living with MS!) We'll tell you about the discovery of the connection between certain MS lesions and progressive MS. There's an interesting survey on the economic impact of MS, and we want to remind you that this Thursday is Burgers to Beat MS day in Canada! We have a lot to talk about. Are you ready for RealTalk MS??!
___________ Scientists Reverse Aging in Brain Stem Cells in Rats and Why That's a Breakthrough in MS Research 1:28 Smoldering Lesions May Signal Progressive MS 6:34
Patient Registry Shows the Economic Impact of MS 9:33
"Burgers to Beat MS" is Thursday at A&W in Canada 11:32
My Interview with Kyra Millich 14:24
Have an iPhone? It's Easy to Give RealTalk MS a Rating & Review 39:22
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STUDY: Niche Stiffness Underlies the Ageing of Central Nervous System Progenitor Cells
STUDY: Association of Chronic Active Multiple Sclerosis Lesions With Disability In Vivo
Burgers to Beat MS Online Donation Page
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RealTalk MS Episode 103
Hosted By: Jon Strum
Guest: Kyra Millich
Tags: MS, MultipleSclerosis, MSResearch, RealTalkMS
My guest is Professor Helen Tremlett, who holds the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia, in Vancouver, Canada. Professor Tremlett has been involved in more than 200 published research studies, and we're going to talk about a few of them -- including the research that she's done on the correlation between MS disability progression and socioeconomic status.
We're also talking about a study that indicates starting disease-modifying therapy early can slow brain atrophy among people living with MS. You already know that physical activity -- even walking -- is beneficial for people living with MS. We'll tell you why it might be even more beneficial for people living with MS to listen to music while they're walking. And we'll share news about potentially positive legislation for federal workers who are also MS caregivers. We have a lot to talk about. Are you ready for RealTalk MS??!
___________ Starting Disease-Modifying Therapy Early Slows Brain Atrophy in MS 1:14 Why You'll Want to Take Your Tunes With You When You Walk 3:23
House Approves Paid Family Leave for Federal Workers 6:29
My Interview with Professor Helen Tremlett 11:38
RealTalk MS & Your Amazon Echo or Echo Dot 32:27
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STUDY: Socioeconomic Status and Disability Progression in Multiple Sclerosis: A Multinational Study
STUDY: The Gut Microbiota and Pediatric Multiple Sclerosis: Recent Findings
STUDY: Relapse Number and Earlier Intervention by Disease Modifying Drugs are Related With Progression of Less Brain Atrophy in Patients with Multiple Sclerosis
STUDY: Continuous 12 Min Walking to Music, Metronomes, and Silence: Auditory-Motor Coupling and Its Effects On Perceived Fatigue, Motivation, and Gait in Persons with Multiple Sclerosis
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RealTalk MS Episode 102
Hosted By: Jon Strum
Guest: Professor Helen Tremlett
Tags: MS, MultipleSclerosis, MSResearch, caregiving
The Charcot Award recognizes lifetime achievement in outstanding research into the understanding and treatment of MS. My guest is Professor Catherine Lubetzki, this year's recipient of the Charcot Award. Professor Lubetzki is being recognized for her very significant contributions to better understanding the underlying disease processes of MS, and her groundbreaking work in furthering our understanding of demylenation and remylenation. Professor Lubetzki is a professor of Neurology at Sorbonne University and head of the department of neurological diseases at Salpetriere Hospital, where she also coordinates the Salpetriere Multiple Sclerosis Clinical Research Center. We're also talking about the research team that identified the specific brain cells that MS destroys. We'll tell you about a new oral disease modifying-therapy for relapsing-remitting MS that's making its way to market. And we'll tell you about the research team that has created a "predictive profile" that identifies who will likely be diagnosed with aggressive MS. We'll tip you off about the specific cognitive functions that are affected by MS depression. And we have lots of news for and about MS caregivers. We have a lot to talk about. Are you ready for RealTalk MS??!
___________ International Research Team Identifies Which Brain Specific Brain Cells are Destroyed by MS 2:04 Oral DMT Pronesimod Moves Closer to FDA Approval 5:29
Early Clinical Markers Are Clues to Aggressive MS 7:20
MS Depression Affects Specific Cognitive Functions 11:18
Laws are Changing for Family Caregivers 12:48
My Work with Embracing Carers and Time Counts 16:29
My Interview with Professor Catherine Lubetzki 19:06
Have a Minute? Leave Us a Rating & Review! 29:59
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STUDY: Nueronal Vulnerability and Multilineage Diversity in Multiple Sclerosis
Jansenn Reports Positive Top-Line Phase 3 Results for Ponesimod in Adults with Relapsing Multiple Sclerosis
STUDY: Early Clinical Markers of Aggressive Multiple Sclerosis
STUDY: Dissociable Cognitive Patterns Related to Depression and Anxiety in Multiple Sclerosis
VIDEO: Jon's Caregiving Story
Join Time Counts
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RealTalk MS Episode 101
Hosted By: Jon Strum
Guest: Professor Catherine Lubetzki
Tags: MS, MultipleSclerosis, mssociety, MSResearch, MSIntFederation, caregiving, EmbracingCarers, EMDSerono
Welcome to Episode 100! In this special episode, we're talking with Jodi Michele Cooley, the winner of our "Be Our Special Guest on Episode 100" contest! At the age of 7, Jodi became an MS caregiver. And at the age of 34, she received her own MS diagnosis. In one way or another, MS has almost always been a part of Jodi's life. And yet, she is the very definition of the word "resilience." We're also re-visiting some of the best moments from some of our most popular interviews. You'll hear about research...you'll learn about MS advocacy...and you'll meet some amazing MS Warriors!
We have a lot to look back on. Are you ready for RealTalk MS??!
___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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RealTalk MS Episode 100
Hosted By: Jon Strum
Guest: Jodi Michele Cooley
Tags: MS, MultipleSclerosis, mssociety, MSResearch, RealTalkMS
My guest is Jenny Freeman, Professor of Physiotherapy and Rehabilitation at the University of Plymouth, in the United Kingdom. Professor Freeman's research has appeared in more than 150 journals and publications. And she's the co-author of Multiple Sclerosis Care -- A Practical Manual, the reference book for all aspects of MS care. We're going to be talking with Professor Freeman about the just-published results of a clinical trial that I think will add a very effective component to physical rehabilitation for people living with progressive MS. And if you believe that losing thousands of dollars and gaining no benefit is the worst thing that can go wrong when it comes to unproven stem cell treatments for MS...well, you're not even close. We're talking about how bad it can really get.
We'll also tell you about the new pilot research grants that the National MS Society just announced. You'll learn about a program that offers amazing outdoor adventure experiences to young adults who are living with MS. And did we also mention that these programs are free??? And you'll have an opportunity to participate in a really interesting clinical trial.
We have a lot to talk about. Are you ready for RealTalk MS??!
NEW! Download a transcript of this episode!
___________ Unproven Stem Cell Treatments for MS -- The Worst Thing That Can Happen is A Lot Worse Than You Think It Is! 1:44 National MS Society Funds 10 High-Risk Pilot Research Grants 10:20
First Descents Expands Outdoor Adventure Experiences for Young Adults Living with MS 12:50
Your Opportunity to Participate in a Really Interesting Clinical Trial (No Drugs Involved) 14:35
Study Results Reveal Physical Rehabilitation That Improves the Lives of People Living with Progressive MS 16:09
My Interview with Professor Jenny Freeman 17:19
RealTalk MS Episode 100 Is Just 1 Week Away! How To Leave Us a Rating & Review 28:27
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Standing Up in Multiple Sclerosis (SUMS)
STUDY: Assessment of a Home-Based Standing Frame Programme in People with Progressive MS (SUMS): A Pragmatic, Multi-Centre, Randomised, Controlled Trial and Cost-Effectiveness Analysis
National MS Society Announces New Pilot Research Projects Beginning Summer 2019
First Descents Program Inquiry
PARTICIPATE: Interventions to Improve Cognitive Functioning In Multiple Sclerosis
Website: The Ohio State University Clinical Neuroscience Lab
Phone: 614-292-9568
Email: ra@clinicalneurosciencelab.com
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RealTalk MS Episode 99
Hosted By: Jon Strum
Guest: Professor Jenny Freeman
Tags: MS, MultipleSclerosis, mssociety, MSResearch, Stemcells, FirstDescents, RealTalkMS
Applying for social security disability benefits can be difficult. It's a stressful and challenging process with an outcome that seems fraught with uncertainty. My guest, Jamie Hall, has represented social security disability claimants before administrative law judges and the Appeals Council in 24 different states. He is also a strong supporter of the National MS Society, where he's conducted numerous seminars on social security disability issues. Jamie is a member of the MS Society's 2010 Leadership Class, and he served as an editor of the National MS Society's SSDI guidebook. Today, we're talking with Jamie about how to take some of that stress and uncertainty out of the process. We're also talking about the serious blow to your ability to access quality healthcare that occurred last week. We'll explain why the World Health Organization rejected the MS International Federation's application to add 3 MS disease-modifying therapies to the 2019 Essential Medicines List. There's news about the connection between your lifestyle choices and MS depression, and I'll share why I see MS depression as a potential matter of life or death.
We have a lot to talk about. Are you ready for RealTalk MS??!
NEW! Download a transcript of this episode!
___________ The Facts Behind the Attack on the Affordable Care Act 2:00 World Health Organization Rejects All MS Medications Submitted for the 2019 Essential Medicines List 10:04
Diagnosing MS With a "Breath Biopsy" 13:00
Australian Researchers Show a Link Between Lifestyle Choices and MS Depression 15:29
Why Treating MS Depression Matters So Much 19:47
My Interview with Jamie Hall 23:15
Have You Downloaded the RealTalk MS App? 40:11
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If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
The Law Office of Jamie R. Hall
Applying for Disability Benefits: A Guidebook for People with MS and Their Healthcare Providers (PDF)
STUDY: Exhaled Breath Markers for Nonimaging and Noninvasive Measure for Detection of Multiple Sclerosis
STUDY: Modifiable Factors Associated with Depression and Anxiety in Multiple Sclerosis
STUDY: Association Between Suicide and Multiple Sclerosis: An Updated Meta-Analysis
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RealTalk MS Episode 98
Hosted By: Jon Strum
Guest: Jamie Hall, Esq.
Tags: MS, MultipleSclerosis, MSResearch, AffordableCareAct, Depression, MSIntFederation, RealTalkMS
My guests this week are 2 exceptional MS warriors, Mike Zimits and Cat Tsigakos. When Mike was diagnosed with MS, he decided he could best help himself by getting into shape, so he got on a bike. And then he convinced his friend's sister, Catherine, to get on a bike. Cat was serving as her brother's caregiver after he was diagnosed with progressive MS. So these 2 people, who had each been affected differently by MS, went from being biking newbies to avid cyclists -- even taking on several stages of the Tour de France. They also raised more than one million dollars for MS research while reminding the world that having an MS diagnosis doesn't mean that you're no longer entitled to have hopes, dreams, and goals. We're also taking a look back at this year's World MS Day, and talking about some of the 400 events that raised awareness about MS in 79 countries. We'll tell you about the MS stem cell research that's about to begin on the International Space Station. We'll review the outcome of a specific rehab treatment that's been shown to improve hand and upper limb ability among people living with MS.
We'll let you know how you can participate in an important MS rehabilitation clinical trial. And we'll tell you about a research study that looked at the economic burden faced by people living with a minimal level of MS disability. The results might surprise you!
We have a lot to talk about. Are you ready for RealTalk MS??!
NEW! Download a transcript of this episode!
___________ World MS Day Recap -- Over 400 Events in 79 Countries 1:16 Stem Cells Travel to Outer Space for MS Research 3:52
Task-Oriented Upper Limb Rehab Program Delivers Results for People Living with MS 7:11
You Can Participate in the STEP For MS Study 9:53
Low MS Disability = A High Level of Economic Burden 13:14
My Interview with Mike Zimits & Cat Tsigakos 18:15
Have You Subscribed to RealTalk MS? 33:11
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
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Join Mike & Cat on Team MSAA Bike Rides
The Effects of Microgravity on Microglia 3-Dimensional Models of Parkinson's Disease and Multiple Sclerosis
Intensity-Dependent Clinical Effects of an Individualized Technology-Supported Task-Oriented Upper Limb Training Program in Multiple Sclerosis: A Pilot Randomized Controlled Trial
STEP for MS Clinical Trial Eligibility Criteria & Trial Site Contact Information
Economic Burden of Multiple Sclerosis in a Population with Low Physical Disability
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NEW! Download a Transcript of This Episode
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RealTalk MS Episode 97
Hosted By: Jon Strum
Guest: Mike Zimits & Catherine Tsigakos
Tags: MS, MultipleSclerosis, MSResearch, MSAssociation, RealTalkMS
Do you ever wonder how or why your neurologist recommends one disease-modifying therapy instead of another? For some people, their first disease-modifying therapy is a mild drug with few side effects. For others, their first disease-modifying therapy might be a more high-powered drug that carries the risk of more possible side effects. But how do neurologists really know when it's appropriate to use one specific disease-modifying therapy or even when it's appropriate to switch to another? My guest is Dr. Ellen Mowry, Associate Professor of Neurology and the Director of the MS Experimental Therapeutics Program at Johns Hopkins University. Dr. Mowry has devoted her entire career to MS research, and her past research has led to breakthroughs in our understanding of MS. Now, Dr. Mowry is the co-principal investigator of a nationwide research study whose outcome could have an impact on the treatment strategy for everyone diagnosed with MS.
We're also talking about the effectiveness of the Wahls Diet in managing MS fatigue, we'll update you on the permanent injunction issued by a U.S. Federal Court against a company that operates shady stem cell clinics, and you'll learn everything you really need to know about Vitamin D and MS.
We have a lot to talk about. Are you ready for RealTalk MS??!
NEW! Download a transcript of this episode!
___________ Like to Read? Now You Can Download a Transcript of Every New Episode of RealTalk MS :26 The Wahls Diet (Plus Lots of Other Interventions) May Reduce MS Fatigue 2:17
U.S. District Court Judge Prevents U.S. Stem Cell From Extracting Stem Cells From Your Fat And Claiming That It Will Be Of Any Benefit To You 7:22
My Interview with Dr. Ellen Mowry 13:46
Have You Subscribed to RealTalk MS? 33:02
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I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
TREAT-MS on clinicaltrials.gov
STUDY: Lipid Profile is Associated with Decreased Fatigue in Individuals with Progressive Multiple Sclerosis Following a Diet-Based Intervention: Results from a Pilot Study
FDA Statement on Stem Cell Clinic Permanent Injunction and FDA's Ongoing Efforts to Protect Patients from Risks of Unapproved Products
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NEW! Download a Transcript of This Episode
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RealTalk MS Episode 96
Hosted By: Jon Strum
Guest: Dr. Ellen Mowry
Tags: MS, MultipleSclerosis, MSResearch, HopkinsMedicine, terrywahls, US_FDA, RealTalkMS
How do you adjust every aspect of your relationship when the partner you've known seems to be vanishing right before your eyes, yet they're still very much there? If you're a caregiver for someone with progressive MS, or any chronic illness, it's very likely that you're living with the trauma of ambiguous loss. My guest is Dr. Pauline Boss, who not only coined the phrase ambiguous loss, but has spent her career teaching university students, practicing as a clinician, and training family therapists, psychologists, and counselors around the world to help individuals and families suffering from the trauma of ambiguous loss and this form of grief that doesn't end.
We're also talking about the research team that successfully duplicated a patient's blood brain barrier...on a chip! A breakthrough that could streamline MS research, make drug screening easier, and help make personalized MS treatment a reality. We'll tell you about a study that evaluated an online version of a successful MS fall prevention program. You'll find out how you can be a part of people-powered MS research. And we'll tell you how MS-FOCUS and Lyft have teamed up to get you to your next MS care appointment.
We have a lot to talk about. Are you ready for RealTalk MS??!
NEW! Download a transcript of this episode!
___________ What is Ambiguous Loss...and Why Is It So Important? :22 Scientists Create Blood Brain Barrier on a Chip 4:32
The Free From Falls Online Program Is Evaluated 6:47
Register with iConquer MS & Be a Part of People-Powered MS Research 9:31
MS-FOCUS & Lyft Can Get You To Your Next Appointment 10:30
My Interview with Dr. Pauline Boss 13:28
Why You Might Want to Download the RealTalk MS App 31:55
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Ambiguous Loss, Pioneered by Dr. Pauline Boss
Books by Dr. Pauline Boss
Human iPSC-Derived Blood-Brain Barrier Chips Enable Disease Modeling and Personalized Medicine Applications
Evaluation of a Web-Based Fall Prevention Program Among People with Multiple Sclerosis
iConquer MS
MS-FOCUS Transportation Assistance Grant
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
NEW! Download a Transcript of This Episode
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 95
Hosted By: Jon Strum
Guest: Dr. Pauline Boss
Tags: MS, MultipleSclerosis, MSResearch, caregiving, iConquerMS, MS_FOCUS, Lyft, RealTalkMS
This week, we're talking about shady stem cell clinics and their shady clinical trials. We'll tell you about a study that makes a connection between stress-related disorders and autoimmune disease, and a research team that may have identified the possible genetic causes of MS. My guest is Dr. Laura Rice, an expert in rehabilitation science and technology at the University of Illinois, Urbana-Champagne. Dr. Rice's focus is on maximizing the quality of life and community participation among wheelchair users. We're talking with Dr. Rice about her new study, designed to prevent falls among wheelchair users.
We'll also tell you about the international team of scientists who succeeded in mapping human microglia, and were surprised by what they found. We'll get you up to speed on the Credit for Caring Act, a bipartisan bill that's been designed to give family caregivers a financial boost. And we'll tell you where to register for the MS Association of America's The Many Faces of MS: Exploring Diversity & Differences webinar, being hosted by Dr. Mitzi Joi Williams.
We have a lot to talk about. Are you ready for RealTalk MS??!
___________ Shady Stem Cell Clinics & Their Shady "Clinical Trials" 1:01 Seeing MS From the Inside Out documentary Wins an Award 6:42
Do Stress-Related Disorders Cause Autoimmune Disease? 8:27
A Study Identifies Possible Genetic Causes of MS 11:01
Scientists Successfully Map Microglia & See Differences in People Living with MS 13:00
The Bipartisan Credit for Caring Act Introduced in Both Houses of Congress 15:28
The Many Faces of MS: Exploring Diversity & Differences 17:20
My Interview with Dr. Laura Rice 19:35
Join the RealTalk MS Conversation 27:10
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
ClinicalTrials.gov
STUDY: Association of Stress-Related Disorders With Subsequent Autoimmune Disease
STUDY: Exome Sequencing in Multiple Sclerosis Families Identifies 12 Candidate Genes and Nominates Biological Pathways for the Genesis of Disease
STUDY: Spacial and Temporal Heterogeneity of Mouse and Human Microglia at Single-Cell Resolution
The Credit for Caring Act
REGISTER: The Many Faces of MS: Exploring Diversity and Differences
Email Dr. Laura Rice
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 94
Hosted By: Jon Strum
Guest: Dr. Laura Rice
Tags: MS, MultipleSclerosis, MSResearch, Stemcells, caregiving, RealTalkMS
Stem Cells are in the news, and we're talking about the U.S. District Court decision that will impact hundreds of stem cell clinics in the United States and the FDA's ability to regulate them. We'll also share two breakthroughs in stem cell research that will likely impact the future of stem cell therapy. My guest on the podcast is Dr. Karen Lee, the Vice-President of Research at the MS Society of Canada. Canada has one of the highest rates of MS in the world, and the MS Society of Canada has responded by launching research initiatives on several fronts.
Dr. Lee is going to give us an update on some of the research that the MS Society of Canada is involved in, including a major multi-year study that's focused on answering the questions, how and why does MS progress?
We have a lot to talk about. Are you ready for RealTalk MS??!
___________ FDA Wins in Federal Court Against For-Profit Stem Cell Clinic Operator 2:15 Harvard Research Team Shows That Stem Cells Can Be Genetically Edited In The Body 7:38
University of California Irvine Uses Nanotech Treatment From Stem Cells to Reverse MS in Mice 10:11
AxoSim Licenses Mini-Brain Technology Developed at Johns Hopkins 12:26
My Interview with Dr. Karen Lee 15:09
Join the RealTalk MS Conversation 26:09
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
FDA Announces Federal Court Decision Against US Stem Cell Clinics
In Situ Modification of Tissue Stem and Progenitor Cell Genomes
Stem Cell-Derived Exomes as Nanotherapeutics for Autoimmune and Neurodegenerative Disorders
CanProCo Study Information & Registration
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 93
Hosted By: Jon Strum
Guest: Dr. Karen Lee
Tags: MS, MultipleSclerosis, MSResearch, MSSocietyCanada, Stemcells, RealTalkMS
MS research scientist Dr. Jeffrey Huang is this year's recipient of the Harry Weaver Neuroscience Scholar Award from the National MS Society. On this week's podcast, we're talking with Dr. Huang about his potentially groundbreaking research, and we'll even ask him how one becomes an MS research scientist. We're also talking about the lectures, presentations, and education sessions that took place last week at the Consortium of Multiple Sclerosis Centers Annual Meeting. We'll explain why we don't think that MS caregivers need more support resources -- and we'll tell you what we think they do need.
We'll tell you about a possible connection between stress, gut bacteria, and MS. We'll explain how a research team determined that simvastatin (Zocor) may help people living with MS differently than it helps people lower their cholesterol. And you'll hear about a new collaboration that may lead to better clinical trials.
Our contest ended this past Friday, and this week, we're announcing who will be joining me as my special guest on the 100th episode of RealTalk MS!
We have a lot to talk about. Are you ready for RealTalk MS??!
___________ Consortium of MS Centers Annual Meeting Review :38 Do MS Caregivers Need More Support Resources...Or Is It Something Else? 3:29
Can Stress Affect Our Gut Bacteria And Cause an Autoimmune Reaction? 8:00
Simvastatin Affects People with MS Differently Than It Lowers Cholesterol 9:18
AbbVie & MC10 Announce MS Clinical Trials Using FDA-Approved Wearable Device 11:47
My Interview with Dr. Jeffrey Huang 14:30
I Reveal Our Contest Winner! Who Will Join Me for Episode 100? 28:18
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
CMSC Annual Meeting Day 1
CMSC Annual Meeting Day 2
CMSC Annual Meeting Day 3
STUDY: Preferences, Needs, & Opportunity Areas for US Multiple Sclerosis Caregivers
STUDY: Social-Stress-Responsive Microbiota Induces Stimulation of Self-Reactive Effector T Helper Cells
STUDY: Applying Causal Models to Explore the Mechanism of Action of Simvastatin in Progressive Multiple Sclerosis
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
MC10's BioStamp nPoint System ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 92
Hosted By: Jon Strum
Guest: Dr. Jeffrey Huang
Tags: MS, MultipleSclerosis, MSResearch, CMSC2019, Caregiving, Simvastatin, AbbVieUS, mc10inc, RealTalkMS
We're at the Consortium of Multiple Sclerosis Centers Annual Meeting in Seattle, Washington, talking about mental health care for people living with MS, coping with anxiety, and the real advantages of telerehabilitation. We even sat down to talk with with artist and MS Activist Lydia Emily.
We have a lot to talk about! Are you ready for RealTalk MS??!
We're at the Consortium of Multiple Sclerosis Centers Annual Meeting in Seattle, Washington, and we're talking about community based programs to enhance comprehensive MS care, understanding the MS care partner's perspective, improving MS treatment outcomes, and more.
We have a lot to talk about! Are you ready for RealTalk MS??!
We're at the Consortium of Multiple Sclerosis Centers Annual Meeting in Seattle, Washington, and we're talking about MS Navigators, Myelocortical MS, a new paradigm in how patients and doctors should be communicating, and more.
We have a lot to talk about! Are you ready for RealTalk MS??!
The International Progressive MS Alliance is an unprecedented and unparalleled global effort to understand and treat progressive MS. Last week, I was in Copenhagen, Denmark, for an important meeting of the Progressive MS Alliance Scientific Steering Committee. And in today's episode, I'll update you on the status of three potentially breakthrough progressive MS international research projects. Don't forget! World MS Day is Thursday, May 30, and we're talking with MS International Federation CEO, Peer Baneke, about why World MS Day is important, and how you can participate!
And this is your final reminder! You only have until May 31 to submit your entry to be my special guest on RealTalk MS Episode #100!
We have a lot to talk about. Are you ready for RealTalk MS??!
You Can Be My Guest on RealTalk MS Episode 100 :59
Research Update from the International Progressive MS Alliance Scientific Steering Committee Meeting in Copenhagen, Denark 2:37
My World MS Day interview with MS International Federation CEO, Peer Baneke 15:07
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Be My Guest on RealTalk MS Episode #100
International Progressive MS Alliance
Multiple Sclerosis International Federation
World MS Day
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 91
Hosted By: Jon Strum
Guest: Peer Baneke
Tags: MS, MultipleSclerosis, MSResearch, ProgressiveMS, MyInvisibleMS, MSIntFederation, RealTalkMS
The Multiple Sclerosis Association of America, or MSAA, provides programs and resources designed to improve the lives of people affected by MS. Whether it's financial assistance for an MRI exam, a new computer, mobility equipment, or even a cooling vest, the MSAA can help. My guest today is Gina Murdoch, the President and CEO of the MSAA, and we're talking about the organization's almost 50-year history, their shared management philosophy of living with MS, and we're taking a deeper dive into into some of their remarkable programs. We're also talking about the Progressive MS Alliance Scientific Steering Committee Meeting that begins tomorrow in Copenhagen, Denmark. You'll hear about the Patient 360 meeting that EMD Serono hosted last week in Washington, D.C., and I'll tell you why that meeting was so special to me.
We're talking about the just announced $100,000 research grant to investigate the challenges faced by people of color who are living with MS and their caregivers. You'll learn about the special search engine that matches MS patients with financial support for disease-modifying therapy.
We'll tell you about 2 new programs from Can-Do MS, focused on young adults who are living with MS and people who are living with secondary progressive MS. And you'll find out how you can be my special guest on the 100th episode of RealTalk MS.
We have a lot to talk about. Are you ready for RealTalk MS??!
Progressive MS Alliance Scientific Steering Committee Meeting in Copenhagen :22
EMD Serono Hosts Patient 360 Meeting 2:27
Accelerated Cure Project & Us Against Alzheimer's Receive $100,000 Grant to Study Challenges Faced by People of Color Living with MS & Alzheimer's Disease 6:07
MAT Can Connect You to Financial Support for Disease-Modifying Therapy 7:53
Can-Do MS Announces Programs for Young Adults Living with MS and People Living with Secondary Progressive MS 9:58
Finalists Announced for Lyfebulb-Celgene Addressing Unmet Needs in MS: Innovation Challenge 12:22
My Interview with MSAA's Gina Murdoch 16:13
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
International Progressive MS Alliance
Multiple Sclerosis Association of America
MAT (Medicine Assistance Tool)
Can-Do MS Young Adults Take Charge Program
Can-Do MS Secondary Progressive MS Webinar Series
Celgene Lyfebulb MS Innovation Challenge
Be My Guest on RealTalk MS Episode #100
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 90
Hosted By: Jon Strum
Guest: Gina Murdoch
Tags: MS, MultipleSclerosis, MSResearch, ProgressiveMS, CanDoMS, MSAA, EMDSerono, Celgene, Lyfebulb, Caregiving, RealTalkMS
I get a lot of listener questions about exercise and MS. And a lot of those questions come from people living with progressive MS, wondering whether the conversation about physical activity and MS applies to them. My guest this week is Dr. Lara Pilutti, an expert in the role of exercise in the management and treatment of disability arising from multiple sclerosis. We're talking about how you want to be thinking about exercise and why you want to be thinking about exercise, whether you're living with relapsing-remitting MS or progressive MS. We're also talking about this year's winner of the Dystel Prize for MS Research. We'll tell you about the long overdue approval of Ocrevus to treat early primary progressive MS in the U.K. You'll hear about the French research team that has found a connection between ancient retroviruses and MS. And we'll tell you about legislation introduced in Congress that's supposed to protect people with pre-existing conditions...but doesn't!
We have a lot to talk about. Are you ready for RealTalk MS??!
Now You Can Find RealTalk MS on Pandora :53
Download the Free RealTalk MS App 1:18
You Can Be My Special Guest on RealTalk MS Episode #100 2:09
Dystel Prize for MS Research Awarded to Dr. Anne Cross 4:17
Ocrevus (Finally!) Approved in the U.K. for Treatment of Early Primary Progressive MS 6:10
Researchers Find a Connection Between Ancient Retroviruses and MS 7:12
Republican Legislators Introduce Bills That Protect People with Pre-Existing Conditions...Or Do They???! 8:25
My Interview with Dr. Lara Pilutti 14:53
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Be My Guest on RealTalk MS Episode #100
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 89
Hosted By: Jon Strum
Guest: Dr. Lara Pilutti
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Ocrevus, ProtectOurCare, Caregiving, RealTalkMS
We're at the American Academy of Neurology Annual Meeting in Philadelphia, and we're talking about teleneurology, stem cells, a new algorithm, and a new research network with ambitious goals. Today, it's a real peek into the future!
We have a lot to talk about! Are you ready for RealTalk MS??!
Get the latest news from the American Academy of Neurology Annual Meeting. We're looking into the future of applying precision medicine to treat MS. We're talking about an artificial intelligence application that's designed to predict the course of your MS and recommend the best treatment plan for you We'll also tell you about a "digital prescription therapeutic" designed to treat depression in people living with MS.
And researchers are also looking at better understanding the recent past, as a research study explains the single most significant factor driving the rising cost of healthcare for people living with MS in the United States. We'll also tell you about a study that compared IV disease-modifying therapies with oral disease-modifying therapies when it comes to slowing MS progression.
There's a lot going on at the AAN Annual Meeting, and we have a lot to talk about! Are you ready for RealTalk MS??!
It's my first day at the American Academy of Neurology Annual Meeting, and we're talking about a great presentation on Progress in Progressive MS and some eye-opening news about the amount of money we're spending in the U.S. on prescription drugs to treat neurological conditions.
My guest this week is Yvette Brisco. Yvette is an MS activist and an MS warrior. And when Yvette talks about the fight to find a cure, she means it literally! We're also talking about the European Medicine Agency's safety review of Lemtrada. We'll tell you about the 20 million American caregivers who are performing medical or nursing tasks for which they've received no training. We'll give you a real-world example of why people living with MS (or anyone else) living in a care facility need an advocate. And you'll hear about a web portal that uses language skills and artificial intelligence to predict cognitive decline.
We have a lot to talk about. Are you ready for RealTalk MS??!
RealTalk MS Will Be Podcasting From All The Major MS Conferences :22
Download the free RealTalk MS app 1:30
The RealTalk MS Listener Community Set Another Record This Month 2:11
You Can Be My Special Guest on RealTalk MS Episode #100 2:51
The EMA Is Reviewing Lemtrada Safety Data 5:00
20 Million Family Caregivers Are Performing Medical or Nursing Tasks Without Training 7:33
One More Example of Why People Living With MS (And Everyone Else) In A Care Facility Needs an Advocate 9:34
Web Portal Uses Language Skills & AI To Predict Cognitive Decline 14:04
My Interview with MS Activist & MS Warrior Yvette Brisco 16:33
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Be My Guest on RealTalk MS Episode #100
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Use of Multiple Sclerosis Medicine Lemtrada Restricted While EMA Review is Ongoing
Home Alone Revisited: Family Caregivers Providing Complex Care
Talk2Me: Automated Linguistic Data Collection for Personal Assessment
Give RealTalk MS a Rating & Review
___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 88
Hosted By: Jon Strum
Guest: Yvette Brisco
Tags: MS, MultipleSclerosis, MSResearch, EMA, Lemtrada, Caregiving, RealTalkMS
Robots?? Really??? The answer is YES! World renowned robotics expert Dr. Maja Mataric joins us on the podcast, and we're talking about how socially assistive robots could be real game-changers for people living with MS and other chronic conditions, as well as their caregivers.
We're also talking about the $24.4 million investment by the National MS Society that will support 64 new MS research projects. We'll tell you about the research team at Oregon Health & Science University that believes they have solved remyelination! We'll show you how you can stay cool this summer and how you can get a brand new laptop or desktop computer from the Multiple Sclerosis Foundation...for free!
We're reminding you that there's still time for you to see the video replay of an outstanding progressive MS webinar, and we'll even tell you about the woman living with MS who decided to get her stem cell transplant live on Facebook!
We have a lot to talk about. Are you ready for RealTalk MS??!
You Can Be My Special Guest on RealTalk MS :22
National MS Society Invests $24.4 Million in 64 New MS Research Projects 3:15
Oregon Health & Sciences University Investigators Announce Remyelination Breakthrough 6:14
Free Resources Available from the Multiple Sclerosis Foundation 10:15
Progressive MS Webinar Hosted by Multiple Sclerosis International Federation 12:15
Hematopoietic Stem Cell Transplantation on Facebook Live 14:21
Diagnosing & Treating MS Video Series Is Available Online 16:11
My Interview with Dr. Maja Mataric 17:27
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Be My Guest on RealTalk MS Episode #100
MS Society Invests $24.4 Million in 64 New MS Research Projects
Myelin Repair Stimulated by CNS-Selective Thyroid Hormone Action
MS-FOCUS Cooling Program
MS-FOCUS Computer Program
VIDEO: Solving Progressive MS: Progress Achieved and Hope for the Future
VIDEO: Jacksonville Nurse Gets Experimental Stem Cell Treatment Live on Facebook
VIDEO: Advances in the Diagnosis and Treatment of Multiple Sclerosis Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 87
Hosted By: Jon Strum
Guest: Dr. Maja Mataric
Tags: MS, MultipleSclerosis, MSResearch, Robotics, Stemcells, Remyelination, MSFocus, MSIF, ProgressiveMS, RealTalkMS
We're at a point in time when there's a tremendous amount of interest as well as confusion surrounding cannabis-based treatments for MS. My guest is Aryn Sieber, the CEO and Founder of the CannaCauses Foundation and Cannaisseur Brands. Aryn is a strong advocate of using cannabis-derived treatments to help relieve symptoms of disease processes, particularly MS. And he's partnered with MS centers and neurologists to better understand how cannabis-based treatments can help people manage their MS symptoms while reducing their dependence on other prescription medications.
We have a lot to talk about. Are you ready for RealTalk MS??!
___________ ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is *your* opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
CannaCauses Foundation
Cannabis and Multiple Sclerosis Symptoms (National MS Society)
Medical Marijuana in Certain Neurological Disorders (American Academy of Neurology)
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 86
Hosted By: Jon Strum
Guest: Aryn Sieber
Tags: MS, MultipleSclerosis, MSResearch, Cannabis, CannaCauses, RealTalkMS
In less than a decade, Meat Fight has actually grown from a backyard barbecue to a non-profit organization that hosts several different fundraising events, offers some unique programs for people affected by MS, and has raised more than $1 million dollars for the National MS Society. My guest today is Alice Laussade, the creator of Meat Fight, and the very definition of a real MS Warrior.
We're also talking about a new research initiative to investigate cannabis and MS. We'll tell you about the potential dangers of unregulated stem cell therapy procedures, a start-up that's out to make getting to your medical appointments easier than it's ever been, and a research study that you can complete from the comfort of your own home -- and get compensated for your time!
We have a lot to talk about. Are you ready for RealTalk MS??!
___________ MS Society in Canada Invests $1.5 Million in Cannabis Research 5:33
Stem Cell Therapy for MS: Still Work to Be Done 6:50
Kaizen Health Is Changing the Way Patients Get to Medical Appointments...for the better! 10:40
MS Research Opportunity 13:57
My Interview with Alice Laussade 15:57
Download the Free RealTalk MS App 34:38
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jon@realtalkms.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
MS Society Canada Team Grant: Cannabis Research in Priority Areas
For More Info on the Kessler Foundation Research Study Contact Michael DiBenedetto
Phone: (973) 324-8391
Email: mdibenedetto@kesslerfoundation.org
Meat Fight
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 85
Hosted By: Jon Strum
Guest: Alice Laussade
Tags: MS, MultipleSclerosis, MSResearch, Cannabis, Stemcells, KaizenHealth, KesslerFdn, Meatfight, RealTalkMS
If someone is being treated for MS, their neurologist is using the Expanded Disability Status Score, or EDSS, to indicate their level of disability. What if there were a better, easier, and more accurate way to measure mobility and evaluate disability? My guest today is Dr. Valerie Block, a Postdoctoral Fellow in the Department of Neurology at University of California San Francisco. As a physical therapist, Dr. Block is focused on MS rehabilitation. And we're talking about a just-published study that demonstrates that the way neurologists measure disability may not be providing a complete and accurate picture...and there may be a much better way to get that done. We're also talking about a new effort to eliminate the Affordable Care Act and strip away all of its protections for people living with MS and every other chronic illness -- and how the National MS Society and 25 other national patient organizations are fighting back by supporting new legislation designed to strengthen the ACA. We'll tell you about the TWO!!! MS prescription medications that just received FDA approval, and we'll even tell you about yet another MS prescription medication that's now awaiting FDA approval. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ RealTalk MS Reaches a Milestone :26
Join the RealTalk MS Conversation :48
Living with MS? Your Access to Healthcare is Under Attack ...Again! 2:53
Mavenclad Receives FDA Approval for Treating Relapsing-Remitting and Active Secondary Progressive MS 11:37
Siponimod Receives FDA Approval for Treating Relapsing-Remitting and Active Secondary Progressive MS 15:01
Celgene Submits Application for FDA Approval of Ozanimod for Treating Relapsing-Remitting MS 16:41
My Interview with Dr. Valerie Block 19:16
Download the Free RealTalk MS App 34:04
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
26 Patient Groups Support Bill to Stabilize and Strengthen the Affordable Care Act FDA Approves New Oral Treatment for Multiple Sclerosis FDA Approves New Oral Drug to Treat Multiple Sclerosis ___________
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RealTalk MS Episode 84
Hosted By: Jon Strum
Guest: Dr. Valerie Block
Tags: MS, MultipleSclerosis, MSResearch, ProgressiveMS, Mavenclad, EMDSerono, Siponimod, Novartis, Celgene, RealTalkMS
March 28th is Progressive MS Day. While only about 15% of the people diagnosed with MS are initially given a diagnosis of Primary Progressive MS, about 65% of the people who are diagnosed with relapsing-remitting MS will eventually develop Secondary Progressive MS. And the difference between progressive MS and relapsing-remitting MS is that, usually, people diagnosed with Progressive MS don't experience any remission in their disease progression. Their MS just seems to worsen more steadily over time. And while we have more than a dozen approved disease-modifying therapies for relapsing-remitting MS, we have just one approved disease-modifying therapy for progressive MS. So using Progressive MS Day to highlight the need for more research, more treatments, and more attention to be paid to this less popular but more devastating MS sub-type is important. My guest on the podcast is Kevin Reid, who was diagnosed with relapsing-remitting MS in 2002, and is now living with progressive MS. We'll get Kevin's thoughts about Progressive MS Day and hear about his very successful efforts as an MS Warrior. We're also talking about a stem cell clinical trial aimed at progressive MS (the National MS Society has invested $1 million in this clinical trial), why neurologists don't seem to be following the recommended guidelines for treating older people living with progressive MS, you'll hear about a couple of excellent MS Association of America webinars and podcasts that focus on the impact of MS on families, and a global webcast that's being hosted by the MS International Federation, featuring some of the top progressive MS experts in the world -- it's a webcast that you won't want to miss. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Progressive MS Day 1:45
MSAA Webinars & Podcasts Focus on Impact of MS on Families 4:31
Neurologists Aren't Following One Particular MS Treatment Guideline 6:10
National MS Society Funds New Clinical Trial Using Individuals' Own Stem Cells to Treat Progressive MS 9:31
In Global Webcast, Top Experts Will Discuss Solving Progressive MS: Progress Achieved and Hope for the Future 11:09
My Interview with Kevin Reid 14:06
Join the RealTalk MS Conversation 27:11
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Podcast: Exploring Relationships & MS with Miriam Franco, MSW, PsyD, MSCS
Webinar: Intimacy & Family Planning with MS with Kimberly Castelo, LMFT, CST, CIIP
Webinar: The Partnership of Care: Redefining Caregiver to Care Partner with Megan Weigel, DNP, ARNP-c, MSCN
Podcast: Spotlighting Care Partner Needs with Lara Krawchuk, MSW, LCSW, MPH
Use and Cost of Disease-Modifying Therapy Between 2008 and 2009: Are Neurologists Adhering to Treatment Guidelines? National MS Society Funds New Clinical Trial of Individuals' Own Stem Cells to Treat Progressive MS Solving Progressive MS Global Webcast Registration Crush MS ___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 83
Hosted By: Jon Strum
Guest: Kevin Reid
Tags: MS, MultipleSclerosis, MSResearch, mssociety, ProgressiveMS, MSAssociation, MSIF, CrushMS, Stemcells, RealTalkMS
MS is an equal opportunity neurological disease. It doesn't seem to discriminate against any particular ethnic or racial group. It affects Latinos and African-Americans, as well as Caucasians. And if you're an MS research scientist, who's hoping to create a viable treatment that's going to be safe & effective for the diverse population living with multiple sclerosis, then having that diversity represented in your clinical research seems like it would be important. Unfortunately, it doesn't always happen that way. Minority populations are frequently overlooked and under-represented in MS clinical research. My guest on the podcast is Dr. Mitzi Joi Williams, a neurologist and MS Specialist with a strong interest in better understanding the course of MS in ethnic minority populations, and in increasing diversity in clinical research. We're also talking about important MS stem cell research that's being funded by the Department of Defense, the risks associated with stem cell tourism, a new oral Disease Modifying Therapy for relapsing-remitting MS, and a newly-approved prescription medication for treatment-resistant depression. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Promising MS Stem Cell Research Funded by Department of Defense 1:33
National MS Society Announces Strategic Partnership with U.S. Department of Veteran Affairs 4:32
The Risks of Stem Cell Tourism 5:26
Celgene Seeks EMA Approval of Ozanimod 11:29
FDA Approves Esketamine for Treatment-Resistant Depression 12:50
My Interview with Dr. Mitzi Joi Williams 16:27
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Using Reprogrammed Stem Cells as a Therapy for MS
Complications of Stem Cell Tourism in Multiple Sclerosis & Other Neurological Diseases: Results From First Nationwide Survey of Academic Neurologists
Celgene Submits Application to EMA for Ozanimod for the Treatment of Relapsing-Remitting Multiple Sclerosis
FDA Approves Esketamine Nasal Spray for Treatment of Resistant Depression
MS Made Simple by Dr. Mitzi Joi Williams
___________
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RealTalk MS Episode 82
Hosted By: Jon Strum
Guest: Dr. Mitzi Joi Williams
Tags: MS, MultipleSclerosis, MSResearch, mssociety, Ozanimod, Esketamine, iConquerMS, Stemcells, RealTalkMS
It's MS Awareness Week! And the single event that is likely going to have the most impact in raising awareness of MS in the United States is the recent announcement of the MS Prevalence Study results. The results of this study corrected the decades old notion that there were only about 400,000 people living with MS in the United States. We now know that the number of people living with MS in the U.S. is closer to one million. More than twice as many as had been previously estimated. In this special RealTalk MS episode, we're going to look at MS prevalence from a number of different perspectives. My guests include National MS Society President and CEO, Cyndi Zagieboylo, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and MS Prevalence Study Investigator, Dr. Ruth Ann Marrie.
But what about people who are living with MS? What are their thoughts about being one in a million? We're also talking with MS Activists Tami Ryan, Karen Jackson, and Dan & Jennifer Diggman. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ It's MS Awareness Week :22
My Interview with National MS Society CEO, Cyndi Zagieboylo 3:40
My Interview with National MS Society Executive Vice-President of Research, Dr. Bruce Bebo 12:32
My Interview with MS Prevalence Study Investigator, Dr. Ruth Ann Marrie 24:18
Comments about the MS Prevalence Study from MS Activists Tami Ryan, Karen Jackson, and Dan & Jennifer Digmann 34:34
Join the RealTalk MS Conversation 38:13
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
The Prevalence of MS in the United States: A Population-Based Estimate Using Health Claims Data
A New Way to Estimate Neurologic Disease Prevalence in the United States Illustrated with MS
Validation for an Algorithm For Identifying MS Cases in Administrative Health Claims Datasets
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 81
Hosted By: Jon Strum
Guests: Cyndi Zagieboylo, Dr. Bruce Bebo, Dr. Ruth Ann Marrie, Tami Ryan, Lisa Jackson, Dan & Jennifer Digmann
Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, TwiceAsMany, MSPrevalence, RealTalkMS
My guest this week is Diane Whitcraft, a retired middle school teacher who had been taking the same MS prescription medication for more than 20 years. But once Diane retired and her health insurance changed, that same medication became unaffordable. Diane traveled to Washington D.C. last month, as Wisconsin Senator Tammy Baldwin's guest at the President's State of the Union address. She is back in our nation's capitol this week, speaking at the National MS Society's Public Policy Conference about the importance of having access to affordable MS prescription medications. Senator Tammy Baldwin (right) and Diane Whitcraft We're also talking about the official statement on stem cell therapy for MS by The American Society for Blood & Marrow Transplantation. We'll tell you about a new study that measured the impact of diet and other lifestyle factors on MS progression, you'll hear about a different study that highlighted the large percentage of people who are being misdiagnosed with MS, and you'll learn how some new emojis will help to de-stigmatize disability. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ It's Our Day on the Hill :57
The American Society for Blood & Marrow Transplantation Makes an Official Statement About Stem Cell Therapy for MS 2:48
STUDY: The Impact of Diet & Lifestyle Factors on MS Progression 5:47
STUDY: 1 in 5 Patients Referred to 2 Academic MS Centers Are Misdiagnosed 8:17
How New Emojis Can Help De-Stigmatize Disability 5:47
My Interview with MS Activist Diane Whitcraft 12:36
Join the RealTalk MS Conversation 28:43
___________
**ADD YOUR VOICE TO THE CONVERSATION**
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Autologous Hematopoietic Cell Transplantation for Treatment-Refractory Relapsing Multiple Sclerosis: Position Statement From the American Society For Blood and Marrow Transplantation
Dietary and Lifestyle Factors in Multiple Sclerosis Progression: Results from a 5-Year Longitudinal MRI Study
Incidence of Misdiagnosis of Multiple Sclerosis in Referrals to Two Academic Centers
Preview the New Emojis That Will Help to De-Stigmatize Disability
National Multiple Sclerosis Society: Advocate For Change
___________
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RealTalk MS Episode 80
Hosted By: Jon Strum
Guest: Diane Whitcraft
Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, MSPPC19, RealTalkMS
No matter what sort of challenge a caregiver may be facing -- financial, emotional, or just trying to find the right resources at the right time, every caregiver challenge is made more difficult by that accompanying feeling of isolation that so many caregivers experience.
My guest is Heidi Telschow, manager of Fairview Health Services' Caregiver Assurance program, a unique program designed to seamlessly connect caregivers to the resources they need.
We're also talking about the eye-popping increase in the prevalence of MS in the United States, now reaching nearly one million adults. We'll tell you about a study that shows how the early use of more intensive MS disease-modifying therapy may provide better outcomes for people living with MS, you'll hear about an Innovation Challenge that could reward your *inner entrepreneur* with $25,000 in cash, and we'll tell you why the FDA has been asked to fast-track a cannabis-based treatment for spasticity in progressive MS. We have a *lot* to talk about! Are you ready for RealTalk MS?! \_\_\_\_\_\_\_\_\_\_\_ STUDY: MS Prevalence In the United States Nears 1 Million **2:18**
STUDY: Long-Term Benefit Seen in Early Use of More Intensive Disease-Modifying Therapy 5:42
Lyfebulb-Celgene Innovation Challenge in MS 9:04
FDA Requested to Fast-Track Cannabis-Based Treatment for Spasticity in Progressive MS 10:43
My Interview with Heidi Telschow from Caregiver Assurance 12:36
___________
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.comPhone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
A New Way to Estimate Neurologic Disease Prevalence in the United States Illustrated with Multiple Sclerosis
Validation of an Algorithm for Identifying MS Cases in Administrative Health Claims Datasets
The Prevalence of Multiple Sclerosis in the United States: A Population-Based Estimate Using Health Claims Data
RealTalk MS Episode 74: Induction vs Escalation Therapy with Dr. Aaron Boster
Clinical Outcomes of Escalation vs Early Intensive Disease-Modifying Therapy in Patients With Multiple Sclerosis
Application for Lyfebulb-Celgene Innovation Challenge in MS
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 79
Hosted By: Jon Strum
Guest: Heidi Telschow
Tags: MS, MultipleSclerosis, MSResearch, TwiceAsMany, Lyfebulb, Caregiving, RealTalkMS
Over the past year, we've seen our access to affordable, quality healthcare come under unprecedented attack. We've seen a federal judge declare the Affordable Care Act to be unconstitutional. And we continue to see our access to affordable prescription medications -- the medications that have been shown to delay the progression of MS and extend the quality of life for everyone living with MS -- that access remains threatened by the constant skyrocketing cost of those medications. That's why advocating on behalf of our own interests is so important to the MS community. My guest this week is Bari Talente, the Executive Vice-President of Advocacy for the National Multiple Sclerosis Society. We're talking about the National MS Society's upcoming Public Policy Conference, the legislative issues that affect people living with MS in the United States, and the importance of MS advocacy. We have a lot to talk about! Are you ready for RealTalk MS?! ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
National Multiple Sclerosis Society: Advocate For Change
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 78
Hosted By: Jon Strum
Guest: Bari Talente
Tags: MS, MultipleSclerosis, MSResearch, mssociety, MSActivist, RealTalkMS
George Pepper was diagnosed with multiple sclerosis in 2009, at the age of 22. He initially found it difficult to connect with others his own age who were living with MS, so George set up a website where people living with MS could meet and share their experiences. That website evolved into an online community called shift.ms, and today, more than 18,000 people participate in the shift.ms community. My guests today are the founder of shift.ms, George Pepper, and Aoife Kirwan, a member of the shift.ms community. We're also talking about a new report that reminds us that there's a lot of fake health news online, how Medicare rules are costing people living with MS more money, a global response to talking about sex and MS, and a study that will introduce you to the Caregiver Strain Index, a reliable tool in measuring MS caregiver burden. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ A solution to Loneliness & MS :23
Study Results Warn Against "Fake Online Health News" 2:48
Medicare Policies Cost People With MS More Money 8:50
MS International Federation Talks About Sex & MS 12:57
Caregiver Strain Index Is A Valid Measurement of Caregiver Burden 14:33
My Interview with George Pepper & Aoife Kirwan 18:24
Join The RealTalk MS Conversation 30:25
___________
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
The Most Popular Health Articles of 2018: A Scientific Credibility Review
Trends in Coverage for Disease-Modifying Therapies for Multiple Sclerosis in Medicare Part D
Sex Life & MS
Measuring Burden in Caregivers of People with Multiple Sclerosis: Psychometric Properties of the CSI Questionnaire
Shift.ms
___________
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RealTalk MS Episode 77
Hosted By: Jon Strum
Guest: George Pepper & Aoife Kirwan
Tags: MS, MultipleSclerosis, MSResearch, Caregiving, ShiftMS, MSIntFederation, RealTalkMS
One of the best ways to maintain physical function, manage the effect of some MS symptoms, and even offset depression is exercise. My guest is Dr. Deborah Backus, the director of Multiple Sclerosis Research at the Shepherd Center in Atlanta. We're discussing the importance of early rehabilitation, the difference that exercise can make for people living with MS, and STEP FOR MS -- an important clinical trial that may turn out to be a game-changer for MS rehabilitation. We're also talking about what people living with MS need to know about polypharmacy, a new transportation pilot project that's designed to make life easier for people living with MS, why an MS caregiver also needs to be an advocate, what happens when an MS caregiver ignores self-care, and a new clinical trial that will look at non-pharmacological approaches to managing MS chronic pain.
We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Join the RealTalk MS Conversation :22
Polypharmacy & Relapsing-Remitting MS 2:39
MS FOCUS's Transportation Pilot Project 6:21
What It Means For an MS Caregiver To Be An Advocate 8:06
What Happens When an MS Caregiver Ignores Self-Care 12:16
Clinical Trial to Study Non-Pharmacological Approaches to Managing Chronic MS Pain Is Recruiting 14:53
My Interview with Dr. Deborah Backus 18:04
Download the RealTalk MS App 33:05
___________
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
Polypharmacy in Outpatients With Relapsing-Remitting Multiple Sclerosis: A Single-Center Study
Investigators Recruiting People With MS Nationwide To Test Approaches to Managing Chronic Pain:
Email: msadapt@uw.edu
Phone: (855) 320-8230
STEP FOR MS Study
STEP FOR MS Eligibility & Study Sites
Shepherd Center
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 76
Hosted By: Jon Strum
Guest: Dr. Deborah Backus
Tags: MS, MultipleSclerosis, MSResearch, Caregiving, StepForMS, ShepherdCenter, RealTalkMS
One of the fundamental questions on the minds of just about everyone living with MS is How did I get it? What causes MS? It's a question that's still awaiting a definitive answer. But as we wait for that answer, science is uncovering more and more information about MS risk factors -- the things that can make living with MS better or worse. My guest is Dr. Farren Briggs, an epidemiologist who's focused on the etiology, or the cause of multiple sclerosis, and the risk factors that actually impact the course of the disease for an individual. We're also talking about the Progressive MS Alliance's commitment to including the voice of people living with MS in MS research. We'll tell you about a study that looked at predicting physical disability and cognitive dysfunction in people living with MS. You'll hear about a study that evaluated the facts that are available on the Internet about diet and MS, how online relaxation therapy can improve anxiety and depression, new guidelines from the U.K. for pregnancy and MS, and how shared decision-making can lead to greater adherence to MS disease-modifying therapy.
We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Progressive MS Alliance & Patient Engagement in MS Research :23
Predicting Physical Disability & Cognitive Dysfunction in MS 2:16
Diet & MS: A Study of Facts vs Beliefs 3:52
Online Relaxation Training Shown To Be Effective in Reducing Anxiety & Depression Among People Living with Long-Term Neurological Conditions 9:57
Guidelines for Pregnancy & MS in the U.K. 11:58
Shared Decision-Making Leads to Greater Adherence to MS Disease-Modifying Therapy 13:40
My Interview with Dr. Farren Briggs 17:34
Add Your Voice To Our Conversation 28:15
___________
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
STUDY: Predicting Clinical Progression in Multiple Sclerosis After 6 and 12 Years
STUDY: Diet and Multiple Sclerosis: Scoping Review of Web-Based Recommendations
STUDY: The Effects of Relaxation Training On Depression and Anxiety In People Living with Long-Term Neurological Conditions
UK Consensus on Pregnancy in Multiple Sclerosis: Association of British Neurologists Guidelines
STUDY: Impact of Shared Decision-Making on Disease-Modifying Drug Adherence in Multiple Sclerosis
___________
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RealTalk MS Episode 75
Hosted By: Jon Strum
Guest: Dr. Farren Briggs
Tags: MS, MultipleSclerosis, MSResearch, CWRU, MSDiet
We know about the importance of disease-modifying therapy (DMT) in managing MS and slowing its progression. But you may not know that there are two very different schools of thought when it comes to how and why your neurologist may recommend one DMT over another. My guest is Dr. Aaron Boster, the System Medical Chief for Neuroimmunology at OhioHealth, and we're talking about an important conversation that you should be having with your neurologist.
We're also talking about the newly published clinical trial results that demonstrate that stem cell therapy may be more effective than DMT in managing disease progression among people living with relapsing-remitting MS. We'll tell you about a study that shows how mindfulness can be valuable in improving the well-being for people living with MS, we'll tell you about this year's winner of the National MS Society's Barancik Prize for Innovation in MS Research, and if you're living with secondary progressive MS, we'll tell you about a survey that you should really participate in.
We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Stem Cell Therapy More Effective Than DMT in Managing Progression in Relapsing-Remitting MS 1:27
Mindfulness Improves Well-Being for People Living with MS 4:21
Stress, Depression & Fatigue Impact Caregiver Health Status 6:19
National MS Society Announces Barancik Prize for Innovation in MS Research 7:22
An Important Survey for People with Secondary Progressive MS 9:27
My Interview with Dr. Aaron Boster 11:58
___________
SHARE YOUR FEEDBACK, QUESTIONS, AND IDEAS
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
STUDY: Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients with Relapsing-Remitting Multiple Sclerosis
STUDY: Longitudinal Associations Between Mindfulness and Well-Being in People with Multiple Sclerosis
STUDY: Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis
MS Coalition/ICER Survey About Secondary-Progressive MS
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 74
Hosted By: Jon Strum
Guest: Dr. Aaron Boster
Tags: MS, MultipleSclerosis, MSResearch, OhioHealthMS, HSCT, Mindfulness, Caregiver, Caregiving, MSSociety, ICER, RealTalkMS
Recent research suggests that loneliness is one more invisible symptom of MS. But social outreach and interaction have never been more accessible. My guest is Mary Pettigrew, an MS Warrior and social media phenom. In 2014, Mary launched MSPals, a Twitter group that has evolved into a community of more than 5,000 followers. We're talking with Mary about the benefits of connecting online and the importance of finding your creative outlet.
We're also talking about new research on the severity and impact of MS fatigue, along with a new smartphone app designed to improve MS fatigue. We'll tell you about a new way of treating spasticity, and we'll give you the details about a new study that's looking at TeleRehab. We'll even tell you how to sign up for the study!
We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Severity & Impact of MS Fatigue 2:06
MS TeleCoach App Designed to Improve MS Fatigue 4:31
A New Treatment to Manage Spasticity 6:45
The STEP MS TeleRehab Study 8:17
You Can Participate in the STEP For MS TeleRehab Study 10:23
My Interview with Mary Pettigrew, Founder of MSPals 11:58
___________
SHARE YOUR FEEDBACK, QUESTIONS, AND IDEAS
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Prevalence of Fatigue and Its Association with Clinical Features in Progressive and Non-Progressive Forms of Multiple Sclerosis
Improving Fatigue in Multiple Sclerosis by Smartphone-Supported Energy Management: The MS TeleCoach Feasibility Study
Supervised vs Telerehab Exercise program for People With Multiple Sclerosis: Eligibility & Study Sites
iConquer MS
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 73
Hosted By: Jon Strum
Guest: Mary Pettigrew
Tags: MS, MultipleSclerosis, MSResearch, STEPMS, MSPals, RealTalkMS
Some people living with MS may find that their attention span is shorter than it used to be, or that it takes them longer to process information. Learning directions can be hard, and decision-making may become more difficult. These are all examples of impaired cognition, or cognitive dysfunction. Cognitive dysfunction can impact people living with relapsing-remitting MS, and it impacts almost everyone living with progressive MS. My guest is Dr. Nancy Chiaravalloti, the Director of Neuropsychology and Neuroscience Laboratory and Traumatic Brain Injury Research at Kessler Foundation, and we're discussing Dr. Chiaravalloti's breakthrough work in improving cognitive function for people living with MS, and using MRI to actually see those improvements in the brain. We'll also tell you about some interesting research that revealed what people living with MS consider to be their most important MS treatment goals, you'll hear about a new discovery that explains why the connection between the gut and MS might be really important, we'll talk some more about the importance of an MS Caregiver Protocol, and we'll tell you how you can participate in a new MS research study. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ The Things We'll Be Talking About in 2019 :24
Some Surprising Patient Preferences When it Comes to Assessing MS Treatment 3:17
Gut Immune Cells Cut Inflammation in MS 7:58
The Importance of an MS Caregiver Protocol 10:22
You Can Participate in an Upcoming MS Research Study 12:37
My Interview with Dr. Nancy Chiaravalloti 14:55
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Evaluation of a Novel Preference Assessment Tool for Patients with Multiple Sclerosis
Recirculating Intestinal IgA-Producing Cells Regulate Neuroinflammation via IL-10
Feasibility of Web-based CBT-I Intervention in Individuals with Multiple Sclerosis
Kessler Foundation
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RealTalk MS Episode 72
Hosted By: Jon Strum
Guest: Dr. Nancy Chiaravalloti
Tags: MS, MultipleSclerosis, MSResearch, KesslerFdn, RealTalkMS
It's our final episode of the year, and we're taking a look back at what you decided were the most important RealTalk MS podcast episodes of the past year. These are the episodes that received the highest number of listener downloads. We're also polishing our crystal ball, taking a look ahead to 2019, and talking about some of the research that we can expect to be hearing about. We'll even share some of the specific topics that we'll be discussing on the podcast in the coming year. Thanks to you, 2018 has been an amazing year for RealTalk MS. Are you ready for 2019?! ___________ LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
RealTalk MS Past Episode Archives
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RealTalk MS Episode 71
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, RealTalkMS, MSResearch
The holiday season seems to carry with it the message of hope, and of finding the best side of who we are. So one of the gifts that I'm going to unwrap with you is a replay of a conversation that I had earlier this year, with 2 people who epitomize hope, humanity, and love. To me, that's what the holiday is all about, and that's what Dan and Jennifer Digmann are all about. Jennifer was diagnosed with Progressive MS in 1997, and Dan was diagnosed with relapsing-remitting MS in 2000. Dan & Jennifer met at a National MS Society event in 2002, and they were married in 2005. We'll get Dan and Jennifer's thoughts about what life is like when both partners in a marriage have been diagnosed with multiple sclerosis. We'll also tell you about the research team that may have identified a biomarker for MS (and why that's a very good thing!). We'll share the results of the Phase III clinical trial data analysis that demonstrates that treatment with Ampyra improves walking ability for people living with MS, we'll tell you about the FDA approval of a Phase II clinical trial for a novel stem cell therapy, and you'll hear about the clinical trial that's about to begin for a new cannabinoid-enriched tablet that can help manage MS pain and spasticity. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Possible Biomarker for MS Identified 1:51
STUDY: Treatment With Ampyra Improves Walking Ability 5:27
FDA Approves Phase 2 Clinical Trial for NurOwn Stem Cell Therapy 7:57
Clinical Trial Planned for Cannabinoid-Enriched Tablet 9:35
My Interview with Dan & Jennifer Digmann 11:02
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Possible Biomarker for Multiple Sclerosis Identified
Assessment of Clinically Meaningful Improvements in Self-Reported Walking Ability in Particpants with Multiple Sclerosis: Results from the Randomized, Double-Blind, Phase III ENHANCE Trial of Prolonged-Release Fampridine
OWC Pharmaceutical Research Corp. Reports the Successful Production of Cannabinoid-Enriched Sublingual Disintegrating Tablet
Dan and Jennifer Digmann
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RealTalk MS Episode 70
Hosted By: Jon Strum
Guest: Dan & Jennifer Digmann
Tags: MS, MultipleSclerosis, RealTalkMS, Ampyra, Cannabis, MSResearch, DanandJenniferDigmann
The logistics involved in traveling can be cumbersome, and that's twice as true if you're living with MS. Mobility issues and other special requirements can make travel challenging. But whether you're out exploring the world or just checking into a local hotel for a pampered staycation, travel can add so much to your quality of life. My guest on the podcast is Tarita Davenock. It's been 20 years since Tarita's MS diagnosis. And today, Tarita is the CEO of Travel For All, a travel agency that embraces the philosophy that travel should be inclusive, and not exclusive. Last week, a federal judge declared the Affordable Care Act to be unconstitutional, and we're talking about what that means for people living with MS. We'll share some newly published results of a stem cell therapy clinical trial, we'll tell you about a study that demonstrates how exercise improves myelin repair in the mouse model of MS, and we'll tell you about CanProCo, a large MS research project just getting underway in Canada. Jon and RealTalk MS were featured in last week's Causepods podcast. We'll tell you what that's all about, and how Causepods has created a way for you to support the National MS Society. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ The Affordable Care Act Was Ruled Unconstitutional -- What This Means for People Living with MS 2:11
RealTalk MS Is Featured on the CausePods Podcast 6:33
Encouraging Results From Stem Cell Therapy Study, But Questions Still Need To Be Answered 8:18
Ocrevus Approved for Treating Relapsing-Remitting MS in Scotland 10:53
Exercise Promotes Myelin Repair in Mouse Model of MS 12:07
The Canadian Proactive Cohort Study for People Living with MS Will Study 1,000 Canadians Living with MS 14:02
My Interview with Travel For All CEO, Tarita Davenock 16:37
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
National Patient Groups Denounce District Court Ruling Overturning Health Care Law
Jon Strum & RealTalk MS on the Causepods Podcast
GoFundMe Page Benefiting The National MS Society
Prospective Phase II Clinical Trial of Autologous Hematopoietic Stem Cell Transplant for Treatment Refractory Multiple Sclerosis
Multimodal Enhancement of Remyelination by Exercise with a Pivotal Role for Oligodendroglial PGC1a
Travel For All
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RealTalk MS Episode 69
Hosted By: Jon Strum
Guest: Tarita Davenock
Tags: MS, MultipleSclerosis, MS, RealTalkMS, TravelForAll, ACA, ProtectOurCare, MSActivist, HSCT, Ocrevus, CanProCo, MSSocietyCanada, Causepods
Artificial intelligence is about to change the entire healthcare landscape. And that might very well include how MS is diagnosed, treated, and managed. It's even beginning to impact the way some MS research is being conducted. My guest is the founder and CEO of iQuity, Dr. Chase Spurlock. iQuity is using its expertise in machine learning to improve patient care, drive the creation of new therapies, and reduce the costs associated with managing chronic illness, including multiple sclerosis. We're also talking about the important but sometimes overlooked difference between MS facts and MS beliefs. We'll tell you about the safety alert that the FDA has issued for Lemtrada, and new survey research from the MS Society in the UK that shows the majority of people living with MS are living with feelings of loneliness and isolation. You'll hear about new study data that shows the gender differences in MS have some age-related fine points that are worth noting, and we'll tell you about a Phase 3 clinical trial that's looking at the effectiveness of high-dose biotin in slowing or stopping MS progression for people living with progressive MS. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ The Difference Between MS Facts & MS Beliefs 0:22
How AI is About to Disrupt Healthcare 4:21
FDA Issues a Safety Alert for Lemtrada 7:40
MS Society in the UK Survey Research Shows 3 in 5 People Living with MS are Living with Loneliness 9:51
Gender Differences in MS Vary with Age & MS Subtype 13:40
MedDay Phase 3 Clinical Trial for Progressive MS Fully Enrolled 15:55
My Interview with iQuity CEO, Dr. Chase Spurlock 17:50
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes
in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
FDA Warns About Rare But Serious Risks of Stroke & Blood Vessel Wall Tears with Multiple Sclerosis Drug Lemtrada
Age-Dependent Variation of Female Preponderance Across Different Phenotypes of Multiple Sclerosis: A Retrospective Cross-Sectional Study
iQuity
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RealTalk MS Episode 68
Hosted By: Jon Strum
Guest: Dr. Chase Spurlock
Tags: MS, MultipleSclerosis, MS, RealTalkMS, mssocietyUK, AI, Lemtrada, MedDay, Biotin, iQuity
Research is the engine that drives us toward better understanding MS, better treating MS, and one day, curing MS. My guest on the podcast is Dr. Larry Sherman, who plays a vital role on the front lines of MS research. We're talking with Dr. Sherman about some of his most significant research and his unique research lab. We're also talking about two important victories for MS Activists. We'll tell you about the EMA approval of Gilenya for treating pediatric MS, the FDA approval of a generic for Aubagio, new technology that will enable people with MS to pilot their wheelchairs by flexing a couple of facial muscles, and the rehab technique that can benefit Olympic athletes and people living with MS. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ MS Activists Have Something to Celebrate 0:22
National Neurological Conditions Surveillance System Will Study Data for MS 4:48
European Medicines Agency Approves Gilenya for Pediatric MS 6:41
FDA Approves Generic for Aubagio 8:21
New Technology Lets You Pilot a Wheelchair By Flexing Facial Muscles 9:32
Motor Imagery with Verbal Cues & Music May Lead to Improved Walking, Fatigue & Quality of Life for People Living with MS 11:31
My Interview with Dr. Larry Sherman 15:34
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes
in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
National MS Society: Get Involved & Advocate For Change
Limbitless Solutions Project Xavier
STUDY: Effects and Mechanisms of Differently Cued and Non-Cued Motor Imagery in People with Multiple Sclerosis: A Randomised Controlled Trial
Oregon National Primate Research Center
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RealTalk MS Episode 67
Hosted By: Jon Strum
Guest: Dr. Larry Sherman
Tags: MS, MultipleSclerosis, MSsociety, ACA, MSActivist, Gilenya, Aubagio, Limbitless3D, RealTalkMS
We're into the final few days of National Family Caregivers Month, and my guest on the podcast is Scott Williams, Vice President, Head of Global Patient Advocacy and Strategic Partnerships at EMD Serono. We're talking with Scott about EMD Serono's commitment to MS caregivers. We're also talking about creating a caregiver protocol that becomes part of the conversation in the neurologist's office as soon as someone is newly diagnosed with MS. We'll tell you about the FDA's new warning about stopping Gilenya. We'll share news about two different clinical trials that are exploring two different cell therapies for treating progressive MS. And we'll share some amazing statistics that demonstrate the reach and effectiveness of the National MS Society's MS Navigator program, a remarkable one-on-one MS support program. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Can We Talk About Establishing a Caregiver Protocol? 1:04
FDA Warns About Severe MS Worsening After Stopping Gilenya 4:54
Phase 2 Clinical Trial Planned for NurOwn Cell Therapy for Treating Progressive MS 6:30
ATA190 Cell Therapy Shows Promising Phase 1 Clinical Trial Results for Treating Progressive MS 7:43
MS Society's MS Navigator Program Demonstrates Reach & Effectiveness 10:36
Scott Williams, Vice-President, Head of Global Patient Advocacy and Strategic Partnerships Discusses EMD Serono's Commitment to MS Caregivers 14:08
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes
in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
FDA Warns About Severe Worsening of Multiple Sclerosis After Stopping the Medicine Gilenya
BrainStorm Cell Therapeutics Announces Submission of IND for NurOwn in Progressive Multiple Sclerosis
Epstein-Barr Virus-Specific T Cell Therapy for Progressive Multiple Sclerosis
Ask An MS Navigator
RealTalk MS Episode 19: MS Navigators -- A Seriously Remarkable Service That You Need to Know About
DOCUMENTARY: Seeing MS From the Inside Out
Embracing Carers
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RealTalk MS Episode 66
Hosted By: Jon Strum
Guest: Scott Williams
Tags: MS, MultipleSclerosis, MSsociety, Gilenya, ProgressiveMS, MSInsideOut, EmbracingCarers, Caregiving, RealTalkMS
I've received some great questions from some of my listeners. And this week, Cherie Binns, an Internationally Certified MS Nurse and the co-chair of the iConquerMS Research committee, is joining me to answer listener questions. She's even going to share some of her tips for living well with MS! We'll also explain why the Americans with Disabilities Act applies to sports arenas, but not to your doctor's office. We'll tell you about an outdoor adventure organization for young adults with cancer that's just expanded it's no-cost programs to include young adults living with MS. The National MS Society has awarded pilot funding to 20 high-risk novel research projects. We'll tell you about what some of these projects are hoping to achieve. And this week, we'll tell you about the people and organizations that we're especially thankful for. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ The ADA Extends to Sports Arenas, But Not Your Doctor's Office 2:37
First Descents Extends Its Outdoor Adventure Program to Young Adults Living with MS 7:19
National MS Society Has Awarded Pilot Funding for 20 High-Risk Novel Research Projects 8:38
Have a Question? Send it In! 13:32
Internationally Certified MS Nurse Cherie Binns Answers Your Questions & Shares Some Tips for Living Well with MS 14:24
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes
in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
First Descents
National MS Society Announces 20 Novel Research Projects
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 65
Hosted By: Jon Strum
Guest: Cherie Binns
Tags: MS, MultipleSclerosis, MSActivist, iConquerMS, MSsociety, RealTalkMS
Patient-centered research is based on an understanding that patients themselves have unique perspectives that can help to mold, change, and improve the work of finding answers to clinical questions. My guest on the podcast is Laura Kolaczkowski, the co-Principal Investigator for iConquerMS. We're talking about the impact this people-powered research network is having on MS research, and how the first ever patient-driven MS drug development project came about. We'll also help you wade through the information and misinformation that surrounds whether people with MS should get a flu shot this season. We'll tell you about a study that demonstrates how ballet exercise can help improve balance and motor control for people living with MS, why a new and more powerful MRI scanner is good news for the MS community, a new smartphone-based study that you can be a part of, and a newly-released video manifesto that you have to see! We have a lot to talk about! Are you ready for RealTalk MS?! ___________ MS & Flu Shots 5:14
Study: Ballet Exercise Improves Balance & Motor Control in People Living with MS 8:05
Genentech Launches Floodlight Open 11:22
FDA Approves More Powerful MRI for Clinical Use 13:33
National MS Society Releases We Believe, a Video Manifesto 15:41
My Interview with Laura Kolaczkowski 17:06
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
STUDY: Targeted Ballet Program Mitigates Ataxia and Improves Balance in Females with Mild-to-Moderate Multiple Sclerosis
Floodlight Open
VIDEO: We Believe
iConquerMS
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RealTalk MS Episode 64
Hosted By: Jon Strum
Guest: Laura Kolaczkowski
Tags: MS, MultipleSclerosis, MSActivist, iConquerMS, MSsociety, RealTalkMS
Caregiving carries a lot of challenges. And for some people, it can feel overwhelming. So, what are the things that make being a caregiver for someone living with a chronic illness like MS so challenging? We're kicking off National Family Caregivers Month with my guest, Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, and we're talking about how to best navigate some of the challenges that go along with being a caregiver for someone living with MS. We're also talking about today's election in the U.S., and what it means for people living MS, the unresolved status of Ocrevus as a treatment for primary progressive MS in the UK, and the fast-tracking of Mavenclad in the UK. We'll tell you about the bus driver who stood up for a man with MS, an insurance company that will fly people to Mexico and pay a cash bonus to buy their MS prescription medication there, and we'll share results from the Embracing Carers International Survey. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ It's Election Day in the U.S. (and what that means to people living with MS!) :22
The Bus Driver Who Stood Up for a Man with MS 2:49
An Insurer Will Fly People with MS to Mexico to Buy Their Prescription Drugs 4:00
Ocrevus On Hold for People with Primary Progressive MS in the UK 5:49
Mavenclad Fast-Tracked in the UK 7:59
Embracing Carers Campaign & Can Do MS Announce a New Collaboration 9:42
Embracing Carers International Survey Results 10:52
Interview with Dr. Amy Sullivan 12:55
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
RealTalk MS Congressional Report Card
CanDo-MS Embracing Carers Program
Recommendations for Cognitive Screening and Management in Multiple Sclerosis Care
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 63
Hosted By: Jon Strum
Guest: Dr. Amy Sullivan
Tags: MS, MultipleSclerosis, MSActivist, DrAmyBSullivan, ClevelandClinic, Caregiving, Caregiver, Ocrevus, Mavenclad, EMDSerono, EmbracingCarers, CanDoMS, RealTalkMS
Cognitive dysfunction can profoundly affect people living with MS, yet it's frequently overlooked and left untreated. That's why the National MS Society convened a working group of world-class experts to explore how cognitive dysfunction was being assessed and to develop a set of guidelines designed to improve the process of cognitive screening and management in MS care. My guest is Dr. John DeLuca, the Senior Vice-President of Research & Training at the Kessler Foundation, and the co-author of the just-published report that details this important set of new guidelines. We're also making an exciting announcement with the Accelerated Cure Project for MS about the RealTalk MS podcast. We're talking about how you can prepare for next week's midterm election in the U.S., we'll tell you how the Federal Trade Commission went after 2 crooked stem cell clinics that claimed they were curing MS, we'll give you a heads-up about MS stem cells that really are heading for outer space, and you'll hear about an investment that the National MS Society made in some exciting cutting-edge commercial biotech research. We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Some Exciting News About RealTalk MS 2:16
How You Can Prepare to Vote in the U.S. Next Week 4:10
2 Phony Stem Cell Clinics Caught Defrauding Patients 10:09
MS Stem Cells Are Headed for Outer Space 14:22
National MS Society Invests in Cutting-Edge Commercial BioTech Research 16:20
Interview with Dr. John DeLuca 17:58
___________
LINKSIf your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
iConquerMS
RealTalk MS Congressional Report Card
FTC Complaint Against Dr. Bryn Jarald Henderson's Stem Cell Clinics
Recommendations for Cognitive Screening and Management in Multiple Sclerosis Care
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 62
Hosted By: Jon Strum
Guest: Dr. John DeLuca
Tags: MS, MultipleSclerosis, MSActivist, Election2018, iConquerMS, KesslerFdn, RealTalkMS
We're 2 weeks away from an event that's going to have an impact on every person in the United States who's living with MS...or any other chronic illness. Because in 2 weeks time - on November 6th - an election's taking place, and healthcare is on the ballot. Maybe not directly...maybe not explicitly...but make no mistake, the choices that voters in America make on election day are going to have a huge affect on our access to healthcare, the cost of healthcare, and the protection that exists today for people living with pre-existing conditions. That's why I'm launching the MS Congressional Report Card. It's an easy way for you to see whether your elected representatives in Congress have supported you and others affected by MS. Every member of Congress has received a letter grade based upon what they did -- or didn't do -- to support people affected by MS. You'll be able to see exactly how well your Representatives and Senators have supported the issues that directly affect you. And then, with that knowledge in hand, you'll be ready to cast your vote on November 6th. We're also talking with my special guest, MS Activist Karen Jackson, about access issues when it comes to casting your vote. We'll tell you about a documentary film that features a new way of interpreting the many sides of living with MS, a possible predictor of brain atrophy in Progressive MS, a new framework for examining how exercise impacts neuroplasticity, and more! We have a lot to talk about! Are you ready for RealTalk MS?! ___________ Introducing the RealTalk MS Congressional Report Card 1:50
A New Documentary -- "Seeing MS from the Inside Out" 5:29
Neurofilament Light Chain Level as a Predictor of Brain Atrophy in Progressive MS 8:38
Conceptual Framework Proposed to Examine Role of Exercise in MS 11:00
Interview with MS Activist Karen Jackson 13:15
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
RealTalk MS Congressional Report Card
Video: "Seeing MS from the Inside Out"
Neurofilament Light Levels in the Blood of Patients with Secondary Progressive MS are Higher than in Primary Progressive MS and May Predict Brain Atrophy In Both MS Subtypes
Integrative CNS Plasticity with Exercise in MS: The PRIMERS (Processing, Integration of Multisensory Exercise-Related Stimuli) Conceptual Framework
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 61
Hosted By: Jon Strum
Guest: Karen Jackson
Tags: MS, MultipleSclerosis, MSActivist, MSInsideOut, KesslerFdn, RealTalkMS
I'm back from Berlin, Germany, where I attended the 34th annual ECTRIMS Congress, and the single biggest challenge that I faced during the 3-day conference was trying to decide which sessions I wanted to attend. With 80 live presentations, more than 1,000 poster presentations, and any number of meetings and even casual conversations that seem to pop up everywhere, it's challenging trying to take it all in. Although ECTRIMS has ended, there's still a bit more to report from the conference, so please consider this podcast episode as the ECTRIMS wrap-up.
We're talking about the effectiveness of a cannabidiol spray on MS spasticity. We'll tell you how environmental factors can impact MS, and we'll explain the two different environments you should be paying attention to. And you'll hear about the study that identified how neurofilament light chain levels can be used in clinical practice to identify which people living with relapsing remitting MS might be at greater risk of increased disease activity and progression.
And we'll wrap up our ECTRIMS 2018 episode by re-visiting my conversation with Bruce Bebo, Executive Vice-President of Research at the National MS Society. Bruce will share his perspective on some of the presentations that caught his attention during the conference, and we'll talk about the $12 million dollar research investment that the National MS Society has just announced.
We have a lot to talk about. Are you ready for RealTalk MS?
___________
The Efficacy of Cannabidiol Spray on MS Spasticity 1:50
The Impact of Environmental Factors on MS 3:35
Neurofilament light chain may identify people with RRMS who are at greater risk of disease progression 5:36
Interview with Bruce Bebo, Executive Vice-President of Research at the National MS Society 9:27
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Video: "Seeing MS from the Inside Out"
ECTRIMS 2018
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RealTalk MS Episode 60
Hosted By: Jon Strum
Guest: Bruce Bebo, Ph.D.
Tags: MS, MultipleSclerosis, ECTRIMS2018, MSInsideOut, RealTalkMS
It's the 3rd and final day at ECTRIMS in Berlin! Today, we're taking you to a special documentary screening that we've been keeping under wraps! (You can watch the trailer as part of the "Bonus" content in the RealTalk MS app!) We're talking about the amazing changes in almost every aspect of how we look at MS that have all taken place within just 25 years. We'll walk you through a couple of the scientific sessions that really stood out earlier today. And we'll tell you how you can find scientific victory in the midst of what some people might consider a setback.
ECTRIMS 2018 feels as though it's been a non-stop 3-day marathon, and this episode of RealTalk MS will take you to the finish line. We have a lot to talk about!
___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Video: "Seeing MS from the Inside Out"
ECTRIMS 2018
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RealTalk MS Episode 59
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, ECTRIMS2018, Shiftms, MSInsideOut, RealTalkMS
It's Day 2 at ECTRIMS in Berlin! Today, we're talking about the Shift.ms booth in the Exhibition Hall, where you can take part in a virtual reality demonstration of what it might be like to accomplish even the simplest tasks if you're living with MS. And if you've downloaded the RealTalk MS app from the Apple App Store for iOS or the Google Play Store for Android, I hope you enjoy the bonus video of the virtual reality demonstration that I shot on the Exhibition Hall floor. I wanted to get an expert's opinion about which ECTRIMS presentations were especially noteworthy, so I turned to Bruce Bebo, the Executive Vice President of Research at the National MS Society. Don't miss my exclusive conversation with Bruce in today's podcast episode. Be sure to download the special ECTRIMS episode of RealTalk MS tomorrow! We have a lot to talk about!! ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
View "Hidden" by Shift.ms
ECTRIMS 2018
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RealTalk MS Episode 58
Hosted By: Jon Strum
Guest: Bruce Bebo, Ph.D.
Tags: MS, MultipleSclerosis, ECTRIMS2018, MSSociety, Shiftms, RealTalkMS
Greetings from Day 1 at ECTRIMS in Berlin! Today, we're talking about pharmaceutical company Novartis seeking approval from the U.S. Food & Drug Administration and the European Medicines Agency for siponimod, a once-daily oral medication that significantly reduces disability progression for people living with secondary progressive MS. This is important news, as 80% of the people living with relapsing remitting MS are eventually diagnosed with secondary progressive MS. And currently, there is no approved disease modifying therapy for secondary progressive MS. The FDA has fast-tracked the approval process, and siponimod could gain the necessary regulatory approval in the U.S. by March, 2019, and in Europe by the end of 2019. The day at ECTRIMS started with a "Welcome" session. Imagine a room that has seating for thousands of people, a stage that must have been 30 yards wide, and not one -- not two -- but SIX jumbo screens set up so that everyone in the room could see. And even with that enormous capacity, there were people standing in the aisles to be a part of the initial session. The "Welcome" session featured a short address by the Chair of the ECTRIMS 2018 conference, Professor Reinhard Hohfeld. After the session ended, Professor Hohfeld and I snuck out to the hallway for a quick conversation. You'll hear my exclusive conversation with ECTRIMS Chair Professor Reinhard Hohfeld in today's podcast episode. Be sure to download the special ECTRIMS episodes of RealTalk MS tomorrow and Friday, as well! We have a lot to talk about!! ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Novartis files for FDA & EMA Approval of Siponimod
ECTRIMS 2018
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 57
Hosted By: Jon Strum
Guest: Professor Reinhard Hohfeld
Tags: MS, MultipleSclerosis, ECTRIMS2018, Siponimod, RealTalkMS
This week, the European Committee for Treatment and Research in Multiple Sclerosis is hosting the ECTRIMS 2018 Congress in Berlin, Germany. It's the largest MS conference in the world. And you can look forward to special episodes of RealTalk MS direct from ECTRIMS, on Wednesday, Thursday, and Friday, October 10th, 11th, and 12th! You'll get the news, hear the interviews, and you'll be the first to get the research updates and announcements as they're being made at the largest MS conference in the world. And if you have the RealTalk MS app (available free at the Apple App Store and the Google Play Store), you'll have access to exclusive bonus content from ECTRIMS that will only be available in the app. (HINT: The ECTRIMS bonus content starts with this episode!) #ECTRIMS2018 gets underway tomorrow. Today, we're talking about the first-of-its-kind patient-focused drug development collaboration between the Accelerated Cure Project for MS and EMD Serono. We'll tell you about the $12 million dollar commitment that the National MS Society just made to support 40 different MS research projects. We'll let you know where to download the new assistive technology app that Google just released that enables you to operate your Android phone (and all the apps!) completely hands-free. And we'll tell you how and why you want to let your Senator know to vote YES on Senate Joint Resolution 63. We have a lot to talk about! Are you ready for RealTalk MS?
___________ RealTalk MS Will Be in Berlin All Week for ECTRIMS 2018 :18
Download the RealTalk MS App & Access Exclusive Bonus Content from ECTRIMS 2:33
Accelerated Cure Project & EMD Serono Announce First-of-its-kind Drug Development Collaboration 3:23
MS Society Commits $12 Million to Fund 40 MS Research Projects 5:53
Study: Which MS Symptoms Are Most Common & Which Are Most Treated? 7:14
Google Releases Google Voice Access 8:34
Take Action: Why You Want to Tell Your Senator to Vote YES on Senate Joint Resolution 63 10:39
Special RealTalk MS Episodes from ECTRIMS This Week 15:29
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
ECTRIMS 2018
iConquer MS
MS Society Commits $12 Million to Fund 40 MS Research Projects
Symptomatology and Symptomatic Treatment in Multiple Sclerosis: Results from a Nationwide MS Registry
Download Google Voice Access
Senate Joint Resolution 63
U.S. Capitol Switchboard -- (202) 224-3121
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 56
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, MSSociety, ECTRIMS2018, MSActivist, RealTalkMS
A lot of people visit the RealTalk MS website to listen to each podcast episode. I wanted to make that easier to do, so last week I released the RealTalk MS app for iOS or Android smartphones and tablets. The app will always have the latest episode of RealTalk MS cued up and ready for you to listen to, and it also lets me share all kinds of bonus content with you. Head to the Apple App Store to download the iOS version of the app, or the Google Play Store to download the Android version of the app. It's the best way to stay connected to the podcast! And speaking of staying connected to the podcast, next week, the European Committee for Treatment and Research in Multiple Sclerosis is hosting the ECTRIMS 2018 Congress in Berlin, Germany. It's the largest MS conference in the world. I'll be there, and you can look forward to special episodes of RealTalk MS, next Wednesday, Thursday, and Friday, October 10th, 11th, and 12th! You'll get the news, hear the interviews, and you'll be the first to get the research updates and announcements as they're being made at the largest MS conference in the world. And if you have the RealTalk MS app, you might even find some exclusive content from ECTRIMS that will only be available in the app. So next week, connect with the RealTalk MS podcast, and I'll do my best to connect you to ECTRIMS 2018. My guest on this week's podcast is Victoria Reese, the founder of the We Are Illmatic campaign. Earlier this year, I had an opportunity to talk with Victoria about the concept of inclusion in the MS community, and how the We Are Illmatic campaign is out to change the face of MS. We're also talking about a research review that reminds us how very bad smoking is for people living with MS, and the results of a 10-year study in the UK about the cost-effectiveness and clinical effectiveness of 4 MS disease modifying therapies. We'll give you the details behind the congressional funding for the National Neurological Conditions Surveillance System in the U.S. And if you're African-American and living with MS, we'll tell you about how you can participate in an MS genetics study being conducted by UCSF.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Download the RealTalk MS App!1:26
RealTalk MS Will Be in Berlin for ECTRIMS 2018 2:27
MS Society UK Publishes Research Review on Smoking & MS 4:10
10-Year Study in UK Shows MS DMT Effective for RRMS 6:25
U.S. Congress Funds National Neurological Surveillance System 9:18
UCSF Recruiting African-Americans for MS Genetic Study 13:09
Interview with Victoria Reese 16:56
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Link Between Smoking & MS Clearer Than Ever
Helpline@mssociety.org.uk (For questions about smoking & MS)
Assessing the Long-Term Effectiveness of Interferon-beta and Glatiramer Acetate in Multiple Sclerosis: Final 10-Year Results from the UK Multiple Sclerosis Risk-Sharing Scheme
Patient Groups Applaud Spending Bill That Funds Important Neuro Data System
UCSF African-American MS Genetic Study Intake Survey
msdb@ucsf.edu (For questions about UCSF African-American MS Genetic Study)
We Are Illmatic
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 55
Hosted By: Jon Strum
Guests: Victoria Reese
Tags: MS, MultipleSclerosis, weareillmatic, ECTRIMS2018, MSSocietyUK, MSActivist, UCSF, RealTalkMS
The RealTalk MS podcast is celebrating its one-year anniversary this week! And to kick off our 2nd year, I'm launching the RealTalk MS app! You can download the iOS version of the app from the Apple App Store, and you can download the Android version from the Google Play Store. The app is free, and it's the very best (and easiest!) way for you to connect to the podcast. And the RealTalk MS app will allow me to share free bonus content with you. So in the weeks and months ahead, I'll be sharing video content, written content...the app give us more ways to connect over meaningful content that I think you'll want to know about.
My guest on this week's podcast is Dr. Aaron Boster, the system Medical Chief for Neuroimmunology at OhioHealth, and we're going to be talking about a really exciting wellness initiative that OhioHealth is undertaking for people living with MS and other neurological conditions. We'll also be discussing how and why OhioHealth finds itself leading the rest of the world when it comes to innovative treatment initiatives for people living with MS. We're also talking about the Phase 3 clinical trial that's getting underway to study the effect of simvastatin on people with secondary progressive MS, a 4-year research study on a new method for treating cognitive dysfunction in people with progressive MS, and we'll look at the surprising results of a survey about quality of life and well-being among people living with MS.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Announcing the RealTalk MS App!1:21
Elizabeth Jameson's NY Times Op-Ed 3:49
Simvastatin Phase 3 Clinical Trial Underway in the UK 4:33
Grant Awarded to Research Cognitive Dysfunction in MS 6:22
Well-Being Differs with Age in MS 9:12
Interview with Dr. Aaron Boster 11:28
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
OhioHealth To Open Neuroscience Wellness Center
Dr. Aaron Boster YouTube Channel
Losing Touch, Finding Intimacy
(Elizabeth Jameson NY Times Op-Ed)
Register for MS-STAT2 (Simvastatin) Phase 3 Clinical Trial in the UK
The Kessler Foundation
Subjective Well-Being Differs With Age in Multiple Sclerosis: A Brief Report
Give RealTalk MS a Rating & Review
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 54
Hosted By: Jon Strum
Guests: Dr. Aaron Boster
Tags: MS, MultipleSclerosis, OhioHealth, OhioHealthMS, KesslerFoundation, RealTalkMS
I spent this past weekend attending the iConquer MS Leadership Summit in Boston. iConquer MS is a people-powered research network created by the Accelerated Cure Project for MS. Instead of just asking people with MS to provide data, iConquer MS is driven by people living with MS, and it represents a new paradigm of building collaborative partnerships to solve big healthcare questions.
This past spring, I had an in-depth conversation with Dr. Robert McBurney, CEO of the Accelerated Cure Project for MS, and David Gwynne, who heads up their Alliances & Collaborations. We'll revisit that conversation, and I'll also give you my thoughts on the remarkable iConquer MS Leadership Summit.
We're also talking about the shocking decision in the UK to withhold Ocrevus as a treatment for Primary Progressive MS, the MS In America 2017 survey results, and I'll tell you about a couple of excellent webinars that you should be sure to check out.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ NICE Rejects Ocrevus for PPMS in the UK1:06
MS In America Survey Results Provide Surprising Insights 4:20
Upcoming Webinars from Can-Do MS 7:40
iConquer MS Leadership Summit 9:49
Interview with Dr. Robert McBurney & David Gwynne 13:09
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Petition to Make Ocrevus Available for People with PPMS in the UK
Relapse Prevalence, Symptoms, and Health Care Engagement: Patient Insights from the Multiple Sclerosis in America 2017 Survey Can-Do MS Webinar Series
iConquer MS
Accelerated Cure Project for MS
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 53
Hosted By: Jon Strum
Guests: Dr. Robert McBurney & David Gwynne
Tags: MS, MultipleSclerosis, Ocrevus, iConquerMS, CanDoMS, RealTalkMS
My guest on the podcast is Mitch Sturgeon. Mitch is an award-winning blogger, and with the publication of his book, Enjoying the Ride: Two Generations of Tragedy and Triumph, Mitch is a published author, as well. In 2001, Mitch was diagnosed with Primary Progressive MS. He was 35 years old at the time, and that was the same age that Mitch's mother was when she took a fall that left her a quadriplegic. Mitch's book is more than just a reflection of his MS journey. It's a story about a family with all of the quirks, idiosyncrasies, strengths, and faults that any family might have...and how they lived through and even prospered, in the face of tragic circumstances. We're also talking about what it means to transition from caregiver to advocate. We'll talk about the concept of cognitive reserve and its relationship to MS disability and depression. And we'll share the latest statistical evidence that makes the case for identifying a reliable biomarker for MS disease progression.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Transitioning from Caregiver to Advocate 1:11
Cognitive Reserve, Disability & MS Depression 10:21
Neurofilament Light Chain As a Reliable Biomarker for MS Disease Activity 13:09
Interview with Mitch Sturgeon 16:17
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Cognitive Reserve Attenuates the Effect of Disability on Depression in Multiple Sclerosis
Neurofilament Light Chain as a Biological Marker for Multiple Sclerosis: A Meta-Analysis Study
Enjoying the Ride: Two Generations of Tragedy and Triumph (Book)
Enjoying the Ride (Blog)
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 52
Hosted By: Jon Strum
Guest: Mitch Sturgeon
Tags: MS, MultipleSclerosis, MSResearch, Caregiving, CognitiveReserve, NeruofilamentLight, Enjoying_Ride, RealTalkMS
MS Research Australia has published a report titled, Health Economic Impact of Multiple Sclerosis in Australia 2017. The report provides a detailed snapshot of the economics behind MS, looking at employment, quality of life issues, and even calculating the cost per person living with MS in Australia. The report concludes with some powerful recommendations for future steps. My guest is Dr. Lisa Melton, Head of Research at MS Research Australia, and we're talking about what this report is telling us, what it's recommending, and how we transition those recommendations into actionable steps. We're also talking about some good news for people living with progressive MS -- the extremely positive outcome of the Phase 2 clinical trial for Ibudilast. We'll tell you about a couple of upcoming educational webinars about Ocrevus and primary progressive MS, and Ocrevus and relapsing remitting MS. We'll update you on the latest news about Phase 2 clinical trials for cannabis-based medications to treat MS, you'll get a heads-up about a very sneaky (and very dangerous) piece of legislation that is potentially devastating to people living with MS in the U.S., and we'll tell you how you can catch an online video of last week's Progress in MS Research: Live Update 2018 presentation in Australia.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Ibudilast Clinical Trial Shows Unprecedented Slowing in Brain Atrophy in Progressive MS 1:11
Upcoming Ocrevus Educational Webinars 3:17
MMJ Intl Asks FDA to Approve Cannabis-MS Study 4:22
Pre-Existing Conditions Bill is Healthcare Wolf in Sheep's Clothing 5:34
Progress in MS Research Lie Update 2018 11:33
Interview with Dr. Lisa Melton 12:30
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Phase 2 Trial of Ibudilast in Progressive Multiple Sclerosis
Upcoming Ocrevus webinars
Legal Brief Filed in U.S. District Court by the National MS Society, American Cancer Society, the American Diabetes Association, the American Heart Association, and the American Lung Association
Ensuring Coverage for Patients with Pre-Existing Conditions Act
Video: Progress in MS Research Live Update 2018
Report: Health Economic Impact of Multiple Sclerosis in Australia 2017
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 51
Hosted By: Jon Strum
Guest: Dr. Lisa Melton
Tags: MS, MultipleSclerosis, MSResearch, MSResearchAustralia, Ibudilast, ClevelandClinic, CleClinicNews, Ocrevus, Cannabis, MMJInternational, PreExistingConditions, Prexxatstake, RealTalkMS
Part of the unpredictability of multiple sclerosis is that it can attack in so many different ways. MS can impact your physical well-being, your emotional well-being, your functional abilities and your quality of life. And if your response to MS is to be seen by a single healthcare professional, some of those many aspects of MS can end up being overlooked and, sometimes, even unrecognized. And so they go untreated. That's why the best approach to treating MS is a team approach. My guest is Dr. Jacqueline Nicholas, a clinical neuroimmunologist specializing in MS at OhioHealth in Columbus, OH. OhioHealth operates an MS Comprehensive Care Center that uses this interdisciplinary team approach to provide personalized treatment that's based upon each patient's specific needs. We're also talking about the discovery of MCMS -- a new MS subtype. We'll tell you about an online resource that offers a comprehensive listing for every kind of support service in key cities throughout the U.S. We're looking at a report just issued by the nonpartisan Government Accountability Office that examines the ways that the U.S. Department of Health & Human Services has been gaming the Affordable Care Act -- and why that's going to cost you more money next year. And we're talking about a study that measures the impact of MS-related swallowing difficulties on quality of life.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ New MS Subtype Discovered. Meet MCMS 2:25
GAO Report: HHS Should Enhance Its Management of Open Enrollment Performance 6:25
Study: The Impact of Swallowing Problems (Dysphagia) on Adults Living with MS 13:07
Interview with Dr. Jacqueline Nicholas 17:29
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
National MS Society Listing of MS Comprehensive Care Centers
GatherMS
Cortical Neuronal Densities and Cerebral White Matter Demyelination in Multiple Sclerosis: A Retrospective Study
Health Insurance Exchanges: HHS Should Enhance Its Management of Open Enrollment Performance
The Frequency of Dysphagia and Its Impact on Adults with MS
Give RealTalk MS a Rating & Review
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RealTalk MS Episode 50
Hosted By: Jon Strum
Guest: Dr. Jacqueline Nicholas
Tags: MS, MultipleSclerosis, MSResearch, DrJNicholas, OhioHealthMS, ClevelandClinic, DefendPreex, Sydney_Uni, RealTalkMS
Shawn Feliciano was diagnosed with MS in 2009, and in 2012, she decided to challenge herself while raising awareness about MS by going on a Big Hike -- hiking 817 miles, from Utah to Arizona. Shawn's Big Hike may have been the perfect metaphor for living with the challenges of MS, and we're talking about having the resilience to take on a challenge, no matter what your personal Big Hike might be. We're also talking about a new study that demonstrates why it's in your best interest to stay on MS Disease Modifying Therapy if you've been diagnosed with relapsing remitting MS. Another study suggests that a diet high in vegetables and fish may reduce the risk of MS. And a third study may provide a path for better mitigating MS depression. We even take a look at two very different short films about MS that, taken together, give us a full, 360-degree depiction of what it's like to live with MS.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Study: RRMS Patients on Long-Term DMT Treatment Less Likely to Progrers to SPMS 1:08
Study: Diet High in Vegetables & Fish Reduces Risk of MS 5:20
Study: Treating Perceived Stress & Poor Sleep May Mitigate MS Depression 7:17
2 Short Films Take Different Paths to Illustrate the Challenges of Living With MS...And They're Both Right 10:30
Interview with Shawn Feliciano 14:13
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Onset of Secondary Progressive MS Is Not Influenced by Current Relapsing Multiple Sclerosis Therapies
The International Progressive MS Alliance
A Healthy Dietary Pattern Associates with a Lower Risk of a First Clinical Diagnosis of CNS Demylenation
Perceived Cognitive Deficits & Depressive Symptoms In Patients with MS: Perceived Stress & Sleep Quality as Mediators
Short Film: Breakthrough MS
Short Film: Hidden
Share Your Feedback About RealTalk MS
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 49
Hosted By: Jon Strum
Guest: Shawn Feliciano
Tags: MS, MultipleSclerosis, MSResearch, MSSociety, BigHike, ShawnFeliciano, Hidden, MSDiet, RealTalkMS
Elizabeth Jameson is an artist who specializes in creating a bridge between art and neuroscience. Since being diagnosed with MS, Elizabeth has transformed her brain MRI scans into remarkable and provocative images that challenge how we view the brain, disability, and illness. In addition to creating her amazing artwork, Elizabeth is an ePatient Scholar and advisor to Stanford Medicine X, and she's written extensively about patient-centered healthcare, design, and the arts. This week, we're standing at the intersection of art and science with my special guest, Elizabeth Jameson, talking about being an ePatient, embracing our imperfect bodies, and the importance of developing a creative narrative about living with MS. We're also talking about a new theory on the cause of MS, how artificial intelligence may change medical imaging to better detect MS, and how one doctor used a bogus MS treatment to cheat his MS patients and their insurance companies out of thousands of dollars.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Researchers Offer a New Theory on the Cause OF MS :50
Australian Government Invests in AI Imaging Technique to Better Detect MS 5:54
A Doctor's Bogus MS Treatment Scams MS Patients and Their Insurance Companies 7:45
Market Research Company Recruiting People with Primary Progressive MS to Complete Paid Online Survey 14:19
Interview with Elizabeth Jameson 15:13
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Hypothesis: Multiple Sclerosis Is Caused By Three-Hits, Strictly In Order, In Genetically Susceptible Persons
Australian Government Invests in Artificial Intelligence for Medical Imaging
California Medical Board Legal Complaint Against Dr. Michael Arlata
Jameson Fine Art
VIDEO: Elizabeth Jameson at TedxStanford: Learning to Embrace Our Imperfect Bodies
Mind On Fire (Elizabeth Jameson's Blog)
Share Your Feedback About RealTalk MS
Give RealTalk MS a Rating & Review
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 48
Hosted By: Jon Strum
Guest: Elizabeth Jameson
Tags: MS, MultipleSclerosis, MSResearch, AI, ElizabethJameson, RealTalkMS
You've heard the statistic before -- 50% of the people living with MS will be diagnosed with depression. And research has shown us that some of the most troubling MS symptoms, including fatigue, cognition, and even physical disability, are all made worse by depression.
Unfortunately, among people living with MS, depression is often overlooked, undiagnosed, and left to only get worse. So imagine an app that will tell you when you're heading toward depression before you even feel it. That's not science fiction -- it's science.
My guest is Peta Slocombe the Senior V.P. of Corporate Health at mental health technology company, Medibio. We're talking about how Medibio's game-changing technology can improve the quality of life for people living with MS.
We're also talking about iConquer MS -- a wide-ranging MS research community that's patient-focused, patient-managed, and patient-driven. Find out how you can be a part of iConquer MS and take an active role in unraveling the riddle of MS.
We'll tell you about about how and why your health insurance premium is going to increase, and how you can test-drive a smartphone app that will better personalize your MS treatment.
We have a lot to talk about! Are you ready for RealTalk MS?
___________ Which Symptoms Matter Most to People Living with MS 1:43
You Can Participate in Patient-Centered MS Research with iConquer MS 3:29
Why New "Short Term" Insurance Rules Will Increase Your Health Insurance Premium 5:48
Test Drive an MS Smartphone App That Will Lead to Better Personalized MS Treatment 10:49
Interview with Peta Slocombe 12:07
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
The Disease Burden of Multiple Sclerosis from the Individual and Population Perspective: Which Symptoms Matter Most?
iConquer MS
myMS App
Medibio
Share Your Feedback About RealTalk MS
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 47
Hosted By: Jon Strum
Guest: Peta Slocombe
Tags: MS, MultipleSclerosis, MSResearch, Medibio, Depression, RealTalkMS
We take advantage of digital tools every day to make our lives easier. But when it comes to managing our health, there's still a long way to go. That's why the MS Society in the UK commissioned a report titled "Improving Care for People with MS: The Potential of Data & Technology". That report has just been published, and we're discussing some of the observations and recommendations contained in this remarkable report with my special guest, Michelle Mitchell, CEO of the MS Society in the UK. We're also talking about a new artificial intelligence-based data analysis platform that can diagnose MS sooner than traditional diagnostic methods, with 90% accuracy. We'll tell you about a new poll that shows that the overwhelming majority of American voters support protecting the rights of people with pre-existing medical conditions, in spite of the Justice Department's efforts to remove those protections. We're taking a look at new research that could change the game when it comes to myelin repair. And we'll tell you about two different MS research studies that are recruiting participants to complete a 15-minute online survey. We have a lot to talk about. Are you ready for RealTalk MS? ___________ AI-Enabled Data Analysis Platform Can Diagnose MS 1:37
Latest Poll Shows Overwhelming Voter Support For Protecting Patients With Pre-Existing Medical Conditions in the U.S. 3:40
Groundbreaking Research Highlights Different Paths to Myelin Repair 7:24
2 Research Studies Recruiting Participants for Online Surveys 12:07
Interview with Michelle Mitchell 13:49
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
iQuity
Friend of the Court Brief Filed in U.S. District Court by the National MS Society, American Cancer Society, the American Diabetes Association, the American Heart Association, and the American Lung Association
University of Melbourne Research Devising New Way to Repair Myelin
CWRU Research Demonstrates Blocking Cholesterol Enzyme Stimulates Myelin Repair
Study Opportunity: Coping Styles in MS & Other Autoimmune Diseases
Study Opportunity: Treatment Options For Walking Difficulties in MS
Improving Care for People with MS: The Potential of Data & Technology
MS Society of Great Britain
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 46
Hosted By: Jon Strum
Guest: Michelle Mitchell
Tags: MS, MultipleSclerosis, MSResearch, iQuity, ProtectOurCare, mssocietyuk, nuffieldtrust, mscare, RealTalkMS
The caregiver's journey doesn't always get paid the proper amount of attention until a family caregiver finds themselves feeling isolated, overwhelmed, drained, and depressed. But it doesn't have to come to that. My guest is Dr. Kate Lorig, lead author of Building Better Caregivers: A Family Caregiver's Guide to Reducing Stress and Staying Healthy. And we're talking about how to go about building better caregivers. We're also talking about a new MRI technique that may enable doctors to identify MS patients who are at high risk of disease progression and disability, whether Tysabri can improve MS sexual dysfunction, a new film about how an "invisible disease" can impact everyday daily living, and a clinical trial that's looking at whether two popular "MS diets" can improve MS fatigue. We have a lot to talk about. Are you ready for RealTalk MS? ___________ MRI Technique Associates Iron in Brain with MS Disability 1:44
Tysabri May Be Effective in Treating MS Sexual Dysfunction 4:11
"Hidden" Shows How an Invisible Disease Can Impact Everyday Life 6:05
Clinical Trial to Look at Effectiveness of Diet in Improving MS Fatigue Is Recruiting Participants 8:08
Interview with Dr. Kate Lorig 10:24
___________
LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Brain Iron at Quantitative MRI Is Associated with Disability in Multiple Sclerosis
Patient Perceived Changes in Sexual Dysfunction after Initiation of Natalizumab for Multiple Sclerosis
Watch "Hidden" on YouTube
shift.ms
Clinical Trial to Test Dietary Approaches to Treating Fatigue in MS
Email Address for University of Iowa Diet & MS Fatigue Study is MSDietStudy@healthcare.uiowa.edu
Building Better Caregivers: A Family Caregiver's to Reducing Stress & Staying Healthy
Give RealTalk MS a Rating & Review
___________
Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 45
Hosted By: Jon Strum
Guest: Dr. Kate Lorig
Tags: MS, MultipleSclerosis, MSResearch, tysabri, Hidden, shiftms, terrywahls, wahlsdiet, swankdiet, caregiving, UIowabiomed, RealTalkMS
My guest this week is Dr. Rhonda Voskuhl, Director of the Multiple Sclerosis Program at the David Geffen School of Medicine at UCLA and the Jack H. Skirball professor of Multiple Sclerosis Research. Dr. Voskuhl is responsible for first identifying that understanding the gender differences in the disease is an important part of understanding MS. This is one of my favorite interviews, and it's packed with great information.
We're also talking about the potential of data and technology to improve care for people living with MS, how MS and depression can lead to high rates of Alexithymia among people living with MS, how recognizing non-traditional MS symptoms can lead to getting an MS diagnosis years earlier, and an opportunity for African-Americans with MS to participate in a UCSF study.
We have a lot to talk about! Are you ready for RealTalk MS?
____________ MS + Depression or Anxiety = High Rates of Alexithymia 2:04
MS Society U.K. Commissions Report on the Potential of Data and Technology to Improve Care for People Living with MS 4:13
U.K.'s National Health Service Announces New App 9:18
Recognizing Non-Traditional Symptoms Can Lead to MS Diagnosis Years Earlier 11:34
UCSF Recruiting African-Americans with MS for Study 14:24
Interview with Dr. Rhonda Voskuhl 17:01
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
International Progressive MS Alliance
High Levels of Alexithymia in Patients with Multiple Sclerosis
Improving Care for People with MS: The Potential of Data & Technology
New NHS App Will Make It Quciker & Easier to Access Health Services
Five Years Before MS Onset: Phenotyping the Prodrome
Email Address for UCSF Study is msdb@ucsf.edu
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 44
Hosted By: Jon Strum
Guest: Dr. Rhonda Voskuhl
Tags: MS, MultipleSclerosis, MSResearch, ProgressiveMS, mssocietyuk, UCLANeurology, UCSFMedicine, RealTalkMS
Using cannabis to treat MS symptoms has become a hot topic. And thanks to social media, a lot of opinions about cannabis and MS are posted as if they're facts...and that's not always the case. So, we're talking about cannabis and MS in this episode of RealTalk MS. We'll try to demystify it a bit and we'll give you an idea of what some of the research is telling us. We'll talk about which MS symptoms cannabis might be good for...and which ones it might not be good for. We're also talking about the latest reason that your health insurance premium is likely to rise in 2019 in the U.S., we'll walk you through "Clinical Trials 101" and explain what each phase of a clinical trial is really all about, and we'll give you the latest update on Ocrevus being rejected as a treatment for PPMS in the U.K.
We have a lot to talk about! Are you ready for RealTalk MS?
____________ U.S. Suspends Payments to Health Insurers 1:47
Everything You Always Wanted To Know About Clinical Trials 8:25
Clinical Trial to Track Urinary Symptoms in MS Is Recruiting Participants 15:05
NICE Rejects Ocrevus for PPMS 16:47
Cannabis & MS 19:04
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
U.S. Suspends Payments to Health Insurers
Become an MS Activist
National MS Society Brochure on Participating in a Clinical Trial
ClinicalTrials.gov
Sample Urinary Symptoms & MS Clinical Trial Survey
Cannabis Use in People with Parkinson's Disease and Multiple Sclerosis: A Web-Based Investigation
National MS Society Research Paper on Cannabis & MS
AAN Guidelines for Medical Marijuana
Real World Experience of Medical Marijuana in Symptomatic Management of Multiple Sclerosis and Transverse Myelitis
Cannabidiol to Improve Mobility in People with MS
Knowledge and Attitudes of Australian General Practitioners Towards Medicinal Cannabis: A Cross-Sectional Survey
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 43
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, MSResearch, Ocrevus, ACA, ProtectOurCare, MSActivist, CannabisandMS, Cannabis, RealTalkMS
When you google the phrase "stem cell therapy for MS", it can feel like you fell into a black hole of conflicting information, misinformation, and dodgy information that can be full of promises designed to speak directly to someone who is anxiously and sometimes desperately looking for a miracle cure for a debilitating condition. And there's also plenty of good, credible information available online. But how do you go about separating the wheat from the chaff? We're going to try to jump start that process for you in this podcast episode, as we look at the current state of stem cell therapy & MS.
We're also discussing the latest news about Ocrevus, medical cannabis for MS, a clinical trial that's recruiting 900 people recently diagnosed with relapsing-remitting MS, a couple of new apps to help you manage MS, and a webinar about maintaining your independence with progressive MS.
We have a lot to talk about! Are you ready for RealTalk MS?
____________ U.K. Approves Ocrevus for RRMS 2:12
MMJ Bioscience Seeks FDA Approval for Cannabis Phase II Clinical Trial 3:48
Biogen Adds MS & Cognition Resource Center to MyMSTeam 5:20
Biogen Releases Aby, an App for People Living with MS 6:30
Nationwide Clinical Trial Recruiting People Newly Diagnosed with MS 9:10
Roche & EAN Produces "Maintaining Independence in Progressive MS" Webinar 11:08
Stem Cell Therapy & MS 12:38
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
MyMSTeam
TREAT-MS Clinical Trial
MS Society Brochure on Participating in a Clinical Trial
Maintaining Independence in Progressive MS Webinar
MS Society: Stem Cells in MS
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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 42
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, MSResearch, Ocrevus, MyMSTeam, Biogen, Aby, HopkinsMedicine, ProgressiveMS, HSCT, RealTalkMS
We talk a lot about MS research. And when we do, we talk about the "investigators"...the experts...the scientists in the laboratories who are expanding our collective knowledge about MS. But who are these folks? How do you become an "investigator"? And why does someone decide that they want to make MS research their professional focus?
My guest on the podcast is Dr. Elisabeth Mari, Director of Biomedical Research for the National MS Society. Dr. Mari takes us behind the scenes and walks us through the process of how someone becomes an MS research fellow. Then, we'll talk with 3 MS research fellows that I met up with at the American Academy of Neurology Annual Meeting. You'll hear about the projects that they're working on, and we'll talk about what initially attracted them to focus on MS research. We're also talking about a new study that strengthens the link between Epstein-Barr Virus and MS, a biomarker that may indicate MS progression, a new Xbox adaptive controller for gamers with disabilities, and an opportunity for Hispanics and Latinos diagnosed with MS to participate in a clinical study. We have a lot to talk about! Are you ready for RealTalk MS? ____________ Study Strengthens Link Between Epstein-Barr Virus & MS 3:29
Neurofilament Light Chain May Predict RRMS Progression 4:56
Microsoft Creates Xbox Adaptive Controller for Gamers with Disabilities 7:40
Perception of Fall Risk Can Be As Important as Physical Limitations to People Living with MS 9:14
USC is Recruiting Latinos/Hispanics with MS for Clinical Trial 12:16
Interview with National MS Society's Director of Biomedical Research, Dr. Elisabeth Mari 14:53
Meet 3 MS Research Fellows 25:52
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
New Study Shows Connection Between Epstein-Barr Virus and MS Progression
Levels of Neurofilament Light Chain May Predict MS Progression (Abstract is on Page 24)
Pre-Order the Microsoft Xbox Adaptive Controller
The Relationship Between Physiological and Perceived Fall Risk in People Living with MS
Hispanics and Latinos with MS Are Being Recruited for a Clinical Trial
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 40
Guest: Dr. Elisabeth Mari
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, MSResearch, mssociety, EpsteinBarrEBV, Xbox, RealTalkMS
MS Activist Marques Jones is running for public office in his home state of Virginia. Marques and I sat down to discuss how his role as an MS Activist led to his candidacy, and how his MS diagnosis has continued to inform his business life and his political life. We're also talking about the existential threat that now exists for people with pre-existing medical conditions in the U.S., how the MSAA can provide financial assistance for your MRI exam, how Ocrevus may delay the need for a wheelchair for 7 years, and the first clinical trial that's been designed to recognize the needs of severely disabled MS patients. We have a lot to talk about! Are you ready for RealTalk MS? ____________ The Trump Administration Has Asked a Federal Judge to Eliminate ACA Protections for People Living With Pre-Existing Conditions 1:30
The Multiple Sclerosis Association of America Expands MRI Access Fund 9:32
Ocrevus May Delay the Need for a Wheelchair for 7 Years 10:47
Genentech Announces 1st Clinical Trial to Recognize Needs of Severely Disabled MS Patients 12:05
Interview with MS Activist and Virginia State Senate Candidate Marques Jones 14:53
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Legal Brief Filed in U.S. District Court by the National MS Society, American Cancer Society, the American Diabetes Association, the American Heart Association, and the American Lung Association
Sign Up to Be an MS Activist
MSAA MRI Access Fund Details & Application
Ocrevus May Delay Need for a Wheelchair by 7 Years
First Clinical Trial to Recognize the Needs of Severely Disabled MS Patients
Marques Jones For Virginia Senate
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 40
Guest: Marques Jones
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, ProtectPatientsNow, MSActivist, MSAA, Ocrevus, NewPath, RealTalkMS
Experts estimate that depression affects about 50% of the people diagnosed with MS. And, left unchecked, depression can take your vibrant, colorful world and re-draw it in somber shades of gray.
If there's good news about depression, it's that it can be treated. In this special Vacation Edition of RealTalk MS, we're going to revisit a really important conversation that I had last November with Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic. Dr. Sullivan shares some really important insights about living with MS and depression...and what to do about it if you are.
At the Consortium of Multiple Sclerosis Centers Annual Meeting, I learned about the Pediatric MS Alliance from Jill Blackburn. I met Dr. Miriam Franco and learned about the app that she's developed and you'll want to download. And I sat down with Dr. Rosalind Kalb and MS Activist Marques Jones to learn about MS Path 2 Care - a new set of educational modules designed to empower people living with MS to be active participants in their own care & treatment.
We're also talking about a study that demonstrates that treatment with Ocrevus may improve cognitive ability in MS patients who are at risk of disease progression. We'll discuss research that suggests that MS patients who are living with depression and fatigue are less likely to adhere to their disease-modifying therapy as prescribed by their neurologist. And I'll tell you how they lowered the cost of MS prescription medications in the U.K.
We have a lot to talk about! Are you ready for RealTalk MS? ____________ Study Indicates that Ocrevus Improves Cognitiion 2:21
Study Indicates that Depression & Fatigue May Affect MS Patient Adherence to Disease-Modifying Therapy 3:32
The U.K. Lowers the Cost of MS Prescription Drugs 7:59
Interview with Jill Blackburn, of the Pediatric MS Alliance 11:26
Interview with Dr. Miriam Franco about the Imagerywork app 18:35
Interview with Dr. Rosalind Kalb & Marques Jones about MS Path 2 Care 22:46
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Pediatric MS Alliance
Download Imagerywork for iPhone
Download Imagerywork for Android
MS Path 2 Care
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RealTalk MS Episode 38
Guests: Dr. Rosalind Kalb, Marques Jones, Dr. Miriam Franco, Jill Blackburn
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, CMSC18RocksNashville, PediatricMS, MSActivist, MSWarrior, Ocrevus, Imagerywork, MSPath2Care, RealTalkMS
I've invited a very special guest to talk about the subject that I've received -- by far -- the most requests to discuss on the podcast, and that's sexual function and MS. We're also talking about the International Progressive MS Alliance's future strategies, World MS Day, and we're giving away an Amazon Echo Dot! We have a lot to talk about! Are you ready for RealTalk MS? ____________ MS Conference Update :51
International Progressive MS Alliance Announces Future Strategies 4:06
World MS Day 6:10
Win an Amazon Echo Dot 7:56
Interview with Stuart Nixon, MBE 11:06
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
The International Progressive MS Alliance
World MS Day
The RealTalk MS Podcast Alexa Skill
Enter to Win an Amazon Echo Dot
___________
Entering our Amazon Echo Dot Contest is Easy!
- Visit www.realtalkms.com/contest
- Click on the "View in iTunes" button on the left
- If prompted to launch iTunes, click the "Launch Application" button
- Click the "Subscribe" button
- Click on "Ratings and Reviews"
- Click the "Write a Review" button
- Write a simple, honest review about the RealTalk MS podcast
- Give us a rating from 1 to 5 stars (with 5 stars being the best)
- Click "SUBMIT"
- Send an email to contest@realtalkms.com. Include your email address and whatever name you left your review under
THAT'S IT! Winner will be announced on the June 26th podcast.
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RealTalk MS Episode 37
Guest: Stuart Nixon, MBE
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, bringinguscloser, Alexa, AllianceCongress2018, RealTalkMS
The RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management.
Yesterday's session included a presentation on how some of the insights from stroke rehabilitation can be transferred to MS rehabilitation. There were detailed presentations on some of the key areas impacting translational strategies in progressive MS, conversations about comorbidities, cognition, exercise, and functional recovery. There were experts talking about managing fatigue, creating a greater sense of resilience, and a novel strategy for bladder management.
In this episode, we're talking to Dr. Karen Lee, Director of Research for the MS Society of Canada, Bernadette Porter, a Consultant Nurse at the National Hospital for Neurology and Neurosurgery in the U.K. with an innovative approach to bladder management designed to tame UTI's, and Levie Hofstee, a tech entrepreneur who has developed a new app that will automatically - and virtually invisibly - track your MS fatigue.
We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?
Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. The first day of the Scientific Congress featured amazing presentations, insightful panel discussions, world-renowned MS researchers, and even a couple of robots! Topics included how brain rehabilitation techniques for people who have suffered a stroke might be translated into rehabilitation techniques for people living with progressive MS, some amazing insights that were gained through external brain stimulation for managing depression, PTSD, and other mental health issues, and how socially assistive robots can aid people living with progressive MS by picking up some of the caregiver burden. The day featured a presentation and panel discussion all about understanding the perspectives of people living with progressive MS, there was a deep dive into how to best use exercise therapy for people living with progressive MS, and a presentation on cognitive rehabilitation. And in this episode, we'll talk to Dr. Lisa Melton, the Head of Research for MS Research Australia, robotics engineer Shane Saunderson, and two MS researchers will walk us through their research studies. We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?
Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. In today's podcast, you'll hear from a renowned progressive MS researcher who is leading an international team of experts in a 3-year research study. You'll also hear from a trio of rehabilitation experts as they discuss some of the challenges they currently face in MS rehabilitation. And we're breaking down the sessions and presentations that will be taking place throughout the day. We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?
Today -- and every day this week -- the RealTalk MS podcast is coming to you live from the Sheraton Centre Toronto Hotel in Toronto, Canada, where, tomorrow, the International Progressive MS Alliance kicks off its 3rd Scientific Congress. The theme of the event is Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management, and on today's podcast episode, we're previewing some of what the attendees will be seeing and hearing. We're also talking about several MS rehabilitation research studies that examine mindfulness meditation and well-being, virtual reality as an effective tool for gait & balance rehabilitation, and how a history of depression might stop people with MS from doing physical exercise. We'll also tell you how you can use social media to share your ideas about next-generation mobility devices. We have a lot to talk about. And we're talking about it live from the International Progressive MS Alliance Scientific Congress on MS Rehabilitation & Symptom Management, at the Sheraton Centre Hotel in Toronto, Canada. ____________ FDA Files Suit Against 2 Stem Cell Clinics 1:03
Mindfulness Meditation Creates Short-Term Well Being for People Living with MS 3:32
Virtual Reality as Effective as Traditional Rehabilitation for Gait & Balance in MS 5:03
Depression as a Barrier to Physical Exercise for People Living with MS 6:55
#MyMobilityUnlimited Is the Hashtag that Lets You Help Design the Future of Mobility Devices 9:34
International Progressive MS Alliance Scientific Congress:
Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management 11:24
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Mindfulness Meditation Improves Short-Term Well Being in MS
Virtual Reality Effective in Treating Gait & Balance Impairment in MS
Lower Aerobic Endurance Linked to History of Depression in MS
#MyMobilityUnlimited Seeks Ideas From Wheelchair Users
The International Progressive MS Alliance
The RealTalk MS Podcast Alexa Skill
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 33
Hosted By: Jon Strum
Tags: MS, MultipleSclerosis, Mindfulness, Depression, MyMobilityUnlimited, MSRehabilitation, Rehabilitation, AllianceCongress2018, RealTalkMS
Living your best life while you're living with MS means learning how to manage and overcome the physical and psychological limitations that MS tries to impose. This week's guest, Dr. Kathleen Zackowski, Senior Director of Patient Management, Care, and Rehabilitation Research for the National MS Society, takes us on a deep dive into MS rehabilitation & symptom management. We're also talking about the FDA approval of Gilenya for treating Pediatric MS, President Donald Trump's announced "blueprint to lower (prescription) drug prices," and next week's International Progressive MS Alliance Scientific Congress on Rehabilitation & Symptom Management. And...we're announcing some very special podcast episodes coming your way next week!! We have a lot to talk about! Are you ready for RealTalk MS? ____________ The RealTalk MS Podcast & Alexa 1:35
FDA Approves Gilenya For Pediatric MS 3:13
President Trump Announces His Prescription Drug Strategy 4:30
MS Rehabilitation & Symptom Management 6:37
International Progressive MS Alliance Scientific Congress 9:35
Special Upcoming Podcast Episodes 10:32
Interview with Dr. Kathleen Zackowski 11:21
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
The RealTalk MS Podcast Alexa Skill
FDA Approves Gilenya for Pediatric MS
The International Progressive MS Alliance
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 32
Guest: Dr. Kathleen Zackowski
Hosted By: Jon Strum
Tags: MS, multipleSclerosis, Alexa, Gilenya, MSRehabilitation, Rehabilitation, AllianceCongress2018, RealTalkMS
In 2004, the average wholesale price of available MS disease-modifying therapies was $16,000. In 2013, the average price was $61,000; last year, the average price was more than $83,000. That's why my guest this week is David Mitchell, founder and president of Patients for Affordable Drugs. We're also talking about the RealTalk MS Podcast Alexa Skill! If you already own an Amazon Echo, Dot, or any Alexa-enabled device, you can access all sorts of convenient features for listening to RealTalk MS! (And if you don't yet have an Alexa-enabled device, this might be one more reason to get one!) A new study concludes that Autologous Haematopoietic Stem Cell Therapy is safe and effective in treating 'aggressive' MS. Another pilot study demonstrates that aspirin can help prevent the onset of overheating and exhaustion following exercise. And your future appointments with your neurologist just may take place from the comfort of your own home. We have a lot to talk about! Are you ready for RealTalk MS? ____________ Our Alexa Announcement :27
Study Shows Autologous Hematopoietic Stem Cell Therapy Safe & Effective In Treating "Aggressive" MS 4:40
Overheating When You Exercise? Study Recommends Taking 2 Aspirin 8:06
How About Having Your Next Appointment With Your Neurologist At Home? 10:15
Interview with David Mitchell 13:00
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
The RealTalk MS Podcast Alexa Skill
STUDY: Autologous Haematopoietic Stem Cell Transplantation in Treatment Naive Patients with 'Aggressive' Multiple Sclerosis
STUDY: A Randomized Controlled Pilot Trial of Aspirin to Improve Exercise Performance in Persons with Multiple Sclerosis
SURVEY: Telemedicine Reduces Barriers to Care for Patients with Multiple Sclerosis and Neruoinflammation
Patients For Affordable Drugs
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 31
Guest: David Mitchell
Hosted By: Jon Strum
Tags: MS, multiple sclerosis, Alexa, David Mitchell, Patients for Affordable Drugs, aHSTC, Stem Cells, Telemedicine, RealTalk MS
We have a lot to talk about in this podcast episode! First, a big announcement...the RealTalk MS Podcast has its own Amazon Alexa Skill! If you already own an Amazon Echo, Dot, or any Alexa-enabled device, you can access all sorts of convenient features for listening to RealTalk MS! (And if you don't yet have an Alexa-enabled device, this might be one more reason to get one!) My guest on the podcast is Dr. Matthew Miles, the CEO of MS Research Australia, the largest non-profit organization dedicated to funding, coordinating, and advocating for MS research in Australia. We're talking with Matthew about some of the amazing research collaborations that MS Research Australia is driving in Australia and around the world. (NOTE: During our conversation, Dr. Miles references the MS Research Australia website as "www.msra.org". The correct website is www.msra.org.au. Sorry for the confusion!) We're also talking about the results of MS research studies that were announced at the just concluded American Academy of Neurology Annual Meeting. These are studies that you need to know about!
____________ The Alexa Announcement 2:22
Introducing Matthew Miles & MS Research Australia 5:48
Study Shows MS Progresses Faster in African-Americans 6:46
Gilenya Shown To Be Effective in Delaying MS Progression & Disease Activity in Pediatric MS 8:00
MS Disease-Modifying Drugs May Lose Effectiveness As You Age 9:46
Interview with Dr. Matthew Miles 11:20
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
The RealTalk MS Podcast Alexa Skill
STUDY: MS Progresses Faster in African-Americans
STUDY: Gilenya Effective in Delaying MS Progression & Disease Activity in Pediatric MS Patients
MS Disease-Modifying Therapies May Be Less Effective As You Age
MS Research Australia
Give RealTalk MS a Rating & Review
___________
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RealTalk MS Episode 30
Guest: Dr. Matthew Miles
Hosted By: Jon Strum
Tags: MS, multiple sclerosis, Alexa, Matthew Miles, MS Research Australia, AAN, Gilenya
The American Academy of Neurology (AAN) is holding its Annual Meeting this week in Los Angeles. And with more than 10,000 neurologists all in one place, we're talking about a LOT of news coming out of that conference. Just some of the topics we're talking about on this week's podcast: * The AAN announced new guidelines for treating MS. * A new study will convince you to begin MS disease-modifying therapy sooner, rather than later. * The National MS Society has announced $14.2 million dollars in funding for 45 new research projects aimed at slowing, stopping, and ending MS. * Genentech announced some good news for MS patients taking Ocrevus. * Biogen announced the results of several MS research studies. * Computer-based cognitive training can improve memory for people living with MS.
My guest on the podcast is 3-time Stanley Cup winner and and star of the National Hockey League's Chicago Blackhawks, Bryan Bickell. Bryan retired from hockey last year, after being diagnosed with MS.
We'll talk with Bryan about what it was like to get that diagnosis, what it was like to score that very memorable final goal of his career, and what lies ahead for him. (NOTE: During our conversation, Bryan references a website, "My Fighting Hockey Story". The correct website is MyFightingStory.com. Sorry for the confusion!)
____________
AAN Announces New Treatment Guidelines For MS 2:02
Study Indicates Importance of Starting MS Treatment ASAP 4:01
National MS Society Investing $14.2 Million in New Research 6:54
Genentech Has Good News For MS Patients Taking Ocrevus 8:25
Biogen Study Correlates MS Cognitive Decline to Socioeconomic Demographics 10:35
Computer-Based Cognitive Training Improves Memory for People Living with MS 12:49
The MSUnderstood Cafe Gives People A Taste of MS 13:49
Interview with hockey star Bryan Bickell 16:03
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
American Academy of Neurology Annual Meeting AAN Announces New Treatment Guidelines for MS Early Versus Later Treatment Start in Multiple Sclerosis - A Register Based Cohort Study Register for Interim Analysis of the Ocrelizumab Biomarker Outcome Evaluation Study in Multiple Sclerosis Research Study Benchmarks of Cognitive Performance in a Large, Representative Patient Population Cognitive Training and Neuropsychological Performance of Patients with Multiple Sclerosis The MSUnderstood Cafe Bryan Bickell's Career Final Shot is a Shootout Goal Bryan Bickell's Story ___________
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RealTalk MS Episode 29
Guest: Bryan Bickell
Hosted By: Jon Strum
Tags: MS, multiple sclerosis, AAN, AANAM, MS Treatment Guidelines, Genentech, Biogen, Ocrevus, NMSS, National MS Society, Roche, MSUnderstood Cafe, Bryan Bickell, RealTalkMS
When we think about MS, we tend to think about it as an adult disease. But the National MS Society reminds us that between 8,000 and 10,000 children up to 18 years old are living with MS in the United States. And studies suggest that between 2 and 5% of everyone living with MS has a history of experiencing the onset of at least one MS symptom before the age of 18. My guest on the podcast is Dr. Emmanuelle Waubant, one of the true pioneers and experts in the field of pediatric MS. We're talking with Dr. Waubant about some of the challenges involved in diagnosing pediatric MS, which disease-modifying therapies can be used to treat pediatric MS (since the FDA hasn't specifically approved any drug to treat pediatric MS) and how kids living with MS deal with all of the challenges that life throws at them.
____________ Healthcare Spending Doubles For People Living With MS 3:38
Vocal Biomarker Detects MS By the Sound of Your Voice 6:44
Researchers Will Study Quality of MS Care in the U.S. 8:11
2018 Dystel Prize for MS Research To Be Awarded 9:33
Interview with Dr. Emmanuelle Waubant 11:24
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Healthcare Spending Doubles for People Living With MS
Sonde Health Patents Vocal Biomarker Technology
Study Looks At Quality of MS Care
Dystel Prize For MS Research Awarded to Dr. Frederik Barkhof
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RealTalk MS Episode 28
Guest: Dr. Emmanuelle Waubant
Hosted By: Jon Strum
Tags: MS, multiple sclerosis, pediatric MS, MS patient costs, Sonde Health, vocal biomarker, Dartmouth Medical Center, MS Care, Dystel Prize, Dr. Frederik Barkhof
As technology advances at an ever increasing rate, it's speeding up the pace of scientific discovery. In this week's podcast, we're looking at new tech tools -- smartphone apps, desktop programs, and mobile technology -- that will change the way you manage MS fatigue, anxiety, foot drop, MS rehab, and more.
And you'll meet this week's guest, Jayce Riley, an MS Road Warrior who is preparing to ride his bike 3,785 miles across the United States to honor his late mother, and raise money for MS research.
____________ MS State Action Day in California :20
Online Therapy Manages MS Fatigue 3:17
FDA Approves Mobile App For LG 300 Go Rehab System 7:31
Register To Test-Drive MyMS, a New Smartphone App 9:13
Generational Differences In Healthcare 10:35
There's a New Online Resource For People With MS 12:57
Interview with Jayce Riley 16:19
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Elevida Online Therapy Clinical Trial Results
FDA Approves Mobile App for LG 300 Go System
Generational Trends in Healthcare
MyMS Smartphone App Study Registration
National MS Society
MS Path 2 Care
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RealTalk MS Episode 27
Guests: Jayce Riley
Hosted By: Jon Strum
Tags: MS, multiple sclerosis, Elevida, MS fatigue, LG300 Go, My Bioness, MyMS, MS Path 2 Care, MS podcast, RealTalk MS
My podcast guest Stephanie Buxhoeveden was diagnosed with MS when she was 25 years old, working as a neurosurgical ICU nurse. Today, Stephanie is a board-certified Multiple Sclerosis Nurse, she is a Nurse Practitioner and she is the Co-Director of the MS Comprehensive Care Center where she has also been a patient. Stephanie will share some of her experiences and observations from the dual perspective of someone who is a medical specialist who treats patients with MS, and also someone who lives with MS. We're also talking about the results of the very first clinical trial to demonstrate a slowing in the progression of disability in secondary progressive MS. We'll tell you about a new Canadian study that shows a clear connection between depression and physical disability in MS. And we'll talk about the kind of information that California's new prescription drug price transparency bill is revealing. ____________ :18 MS Awareness -- It's A 12-Month Campaign
3:01 New Drug Slows Disability Progression in Secondary Progressive MS
4:09 Study Shows Depression Impacts MS Physical Disability
6:42 Drug Price Transparency Law in California Begins to Reveal Real Information
8:49 Interview with Stephanie Buxhoeveden
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LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com
Articles & Videos by Stephanie Buxhoeveden
GPS For Your MS: Initiating Your Wellness Journey
Emergency Preparedness
Facing the Emotional Symptoms of MS Together
TedX Talk: Thriving In The Face of Adversity
MS Path 2 Care
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For more RealTalk MS, follow us on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
RealTalk MS Episode 26
Guests: Stephanie Buxhoeveden, MSCN, FN-BC, MS Activist
Hosted By: Jon Strum
Tags: MS, multiple sclerosis, Stephanie Buxhoeveden, Siponimod, MS and depression, MS prescription drug prices, prescription drug price transparency, MS podcast, RealTalk MS
March is MS Awareness Month, and tomorrow we'll be observing the first ever Progressive MS Day, which is being celebrated by several MS advocacy groups and state governments around the United States.
My guests on the podcast are Dan and Jennifer Digmann. Jennifer was diagnosed with Progressive MS in 1997, and Dan was diagnosed with relapsing-remitting MS in 2000. Dan & Jennifer met at a National MS Society event in 2002, and they were married in 2005.
Together, Dan & Jennifer write an award-winning MS blog, they host the A Couple Takes On MS podcast on the MS & ME Radio Network, they've co-authored a book entitled, Despite MS, to Spite MS, and in 2015, they were inducted into the National MS Society Volunteer Hall of Fame for Advocacy.
We'll talk with Dan & Jennifer Digmann and get their thoughts about Progressive MS Day, and on what life is like when both partners in a marriage have been diagnosed with multiple sclerosis.
____________ 1:42 Managing MS Pain Through Mindfulness 4:50 Improving Cognitive Processing By Walking On a Treadmill 6:11 The Importance of Sleep in MS Symptom Management 9:57 Progressive MS Day With Dan & Jennifer Digmann ____________ LINKS If your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com Association Between Pain & Mindfulness in Multiple Sclerosis Guided Mindfulness Meditation for Pain Relief by Jon Kabat-Zinn Treadmill Walking & Brain Function in Multiple Sclerosis Poor Sleep in Multiple Sclerosis Importance of Sleep in Multiple Sclerosis Dan & Jennifer Digmann A Couple Takes On MS Podcast Despite MS, To Spite MS ____________ For more RealTalk MS, follow us on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 25 Guests: Dan & Jennifer Digmann Hosted By: Jon Strum Tags: Progressive MS Day, MS, multiple sclerosis, Dan and Jennifer Digmann, MS pain, Mindfulness, MS and cognition, MS and sleep, MS podcast, RealTalk MS
Depression affects over one million people around the world who are living with MS. And when you fail to treat depression, every other aspect of life seems to get worse - and that can include your MS symptoms.
My guest on this week's podcast is Dr. Athena Robinson, the Chief Clinical Officer at Woebot Labs, and we're talking about Woebot -- a breakthrough app that lives on your smartphone and has been proven to be effective in treating depression.
We're also talking about a robotic arm brace that restores the use of paralyzed limbs due to MS, ALS, and stroke. And you'll hear all about 2 new MS research studies taking place at the University at Buffalo. We'll even tell you where you can sign up to test-drive a smartphone app that's been developed to help your neurologist fine-tune your MS treatment and better personalize your MS symptom management. We have a lot to talk about! Are you ready for RealTalk MS?
The Accelerated Cure Project for Multiple Sclerosis is a national non-profit organization dedicated to accelerating advances toward a cure for MS. My guests on this week's podcast are Dr. Robert McBurney, the President & CEO of the Accelerated Cure Project for MS, and David Gwynne, who manages their Alliances & Collaborations. We're talking about some of their major initiatives, their recent announcement about a new collaboration, and you'll even learn how you can be a part of MS research.
We're also talking about amazing research being done at Cambridge, where they're successfully repairing myelin in the lab using a patient's skin cells. And we're re-capping the National MS Society's Public Policy Conference and Day on Capitol Hill in Washington, D.C.
We have a lot to talk about! Are you ready for RealTalk MS?
To kick off MS Awareness Month, we'll go inside a private VIP research briefing where you'll hear 3 award-winning MS research scientists tell us how their work is impacting our understanding of multiple sclerosis.
Then, you'll meet my special guest, Emily Blosberg, founder of Oscar, the MS Monkey. Emily is an amazing young lady who's making life better for some of the youngest folks who are living with MS today and their families.
We have a lot to talk about! Are you ready for RealTalk MS?
Decisions made by our legislators can have a direct impact on our healthcare, our financial well-being, and our overall quality of life. That's why next week, 300 MS Activists will be in Washington D.C. to hold more than 400 conversations with our elected officials about the legislative issues that are likely to have the greatest impact on people living with MS. My guest on this week's podcast is Bari Talente, Executive Vice President of Advocacy for the National MS Society. This week's entire podcast is devoted to talking about MS advocacy and the importance of being an #MSActivist. We have a lot to talk about! So are you ready for RealTalk MS?
While we're tracking the breakthroughs and discoveries that move us closer to solving the riddle of multiple sclerosis, it's also important to remember that people living with MS need help today. Some of them need help with even the most basic sorts of daily tasks. My guests on the podcast are Angela Lett and Alison Payne from Helping Hands, a non-profit organization that helps adults with MS and other mobility impairments live independent lives by providing them with a very special service animal -- a highly trained capuchin monkey -- to live in their home and assist them with the tasks of everyday living. We're also talking about how 3D printing technology is paving the way for important MS research. And we're talking about the cutting-edge research by an award-winning neuroscientist who is investigating the effects of aging on mylenation. And Canadian researchers may have identified an anti-depressant that can be re-purposed to treat Progressive MS.
We have a lot to talk about! So are you ready for RealTalk MS?
If you're looking for no-cost customized, personalized, one-on-one expert advice on all sorts of issues that people with MS encounter, you're going to want to pay attention to my conversation with Kay Julian, Executive Vice-President of Services at the National MS Society.
We're also talking about the demographic imbalance in MS clinical trials, and why that matters. (And you can find the Accelerated Cure Project's MS Minority Research Engagement Report here). We're discussing the initial results of a clinical trial of a stem cell therapy that may reverse physical disability in progressive MS. It may turn out that a drug designed to improve walking for people with MS may have some additional benefits. And we're also talking about research from Penn State that may explain one reason why 50% of the people living with MS are going to be diagnosed with depression.
We have a lot to talk about! So are you ready for RealTalk MS?
Multiple sclerosis doesn't respect borders, and that's why a global response to MS is so necessary. And that's where the MSIF comes in. My guest this week is Mr. Peer Banake, CEO of the MS International Federation.
ACTRIMS -- the largest MS research conference in the United States -- took place last week in San Diego, California. We were there, and we're talking about the news and the research announcements that were made at the conference.
We have a lot to talk about this week! Are you ready for some RealTalk MS?
Sometimes, important breakthroughs can come from unexpected places. This week, our guest is Oded Ben Dov, an Israeli game developer who ended up creating life-changing technology designed to help people living with MS, ALS, and other disabilities.
We're talking about some exciting news in Progressive MS research. We're also talking about a possible treatment for MS fatigue. Researchers in Australia have patented a molecule that's designed to protect the central nervous system and support myelin repair. And we'll tell you about a chewing gum that offers the controlled release of cannabinoids to treat MS pain and spasticity.
We have a lot to talk about! So are you ready for RealTalk MS?
Robots?? Really??? The answer is YES! Dr. Maja Mataric joins us on the podcast, and we're talking about how socially assistive robots could be real game-changers for people living with MS and other chronic conditions, as well as their caregivers.
We're breaking down the specific ways that the new U.S. tax code will impact people living with MS. We're also talking about how the FDA just raised a red flag for one stem cell treatment for MS that made promises it wasn't keeping. And we'll tell you about a new project designed to study emotional processing challenges experienced by people living with MS.
We have a lot to talk about! So are you ready for RealTalk MS?
Jon's guest on the podcast is Victoria Reese, founder of the We Are Illmatic campaign. We Are Illmatic is building awareness and providing support for women of color who are living with MS in their lives.
We have good news about the U.S. Defense Department's MS Research Program, and the passage of the bipartisan RAISE Caregivers Act.
We'll tell you how an MS patient's handwriting may predict a decline in movement, sensory, and cognitive skills. And we'll share some interesting research about a hidden benefit associated with Gilenya.
Are you ready for RealTalk MS?
It's a new year and we have a lot to talk about! There's good news about new clinical trials...the FDA has given a "Breakthrough Therapy" designation for the first MS treatment approved for children and teens living with MS...UCLA researchers have identified why estrogen seems to have real potential as a treatment for MS...prices for some MS drugs are going up...pharmaceutical companies are suing the state of California over prescription price transparency...and host Jon Strum will tell you why the pace of scientific discovery is going to increase in 2018.
Are you ready for some RealTalk MS?
The International Progressive MS Alliance is an unprecedented global alliance of MS organizations, researchers, clinicians, pharmaceutical companies, and people living with progressive MS, transforming the landscape of multiple sclerosis. This week, we're talking about the work and the progress of the Alliance with Professor Alan Thompson, Dean of Faculty of Brain Sciences at University College London, and Chair of the Alliance's Scientific Steering Committee. We're also talking about a study published by Johns Hopkins School of Medicine that demonstrates how pursuing a healthy lifestyle can further limit disability and depression in MS. And we're discussing how a simple blood test may soon replace MRI scans to measure MS disease progression. We'll also tell you about a $4 million dollar innovation challenge to create next-generation smart mobility devices.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
Multiple sclerosis affects men and women differently. Women are 3 times more likely to get MS, but men often develop more significant disabilities from MS. This week's guest, Dr. Rhonda Voskuhl, is a trailblazer in not only exploring the differences between the sexes in MS, but in identifying what seems to be a safe and effective treatment for MS symptoms. So why aren't pharmaceutical companies lining up to bring this treatment to market? Hear what Dr. Voskuhl has to say about that and more in this week's podcast. We're also talking about a study that illustrates how your diet may be an effective tool in reducing MS symptoms and limiting disability. And we're discussing what thousands of people with MS once considered to be a "breakthrough" in treating MS that, according to its creator, doesn't work at all.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
Whether it's research, news, or even pending legislation, there's a lot happening around the world that's going to impact families living with MS. In this week's podcast, we'll round up some of that news and bring you up to speed on some of the things that you ought to know about. We're talking about how the pending income tax legislation can be financially devastating to families living with MS - and we'll explain what you can do about it right now. We'll look at a new clinical trial testing a cannabis-based medicine designed to treat MS symptoms. We'll talk about the construction of what's being billed as, "the world's leading treatment and research center for multiple sclerosis." We'll give you one more very good reason why people diagnosed with MS should not be smoking. And we'll break down how, when, and by how much, multiple sclerosis impacts a woman's pregnancy.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
November is National Family Caregivers Month, and we're talking all about caregiving. Being a caregiver for a family member with MS or any chronic illness can be one of the greatest blessings that a person may receive. It can also be one of the most stress-producing, anxiety-creating, and even life-threatening undertakings that a person may endure. No one ever applies to be a caregiver, and the job doesn't come with an instruction manual. So we're going to be discussing: * The real costs -- both financial and emotional -- of caregiving * The 3 characteristics that all great caregivers have * How to spot the signs of caregiver burnout and depression
We'll even share some specific strategies designed to empower caregivers to provide outstanding care to their loved ones while still maintaining a sense of balance in their own lives. We're also talking about the current income tax legislation being considered in Congress. We'll take a close look at the tax bill that's been passed by the House of Representatives, and the version of the bill still under consideration in the Senate, because each version of this legislation carries risks that can be financially devastating to families living with MS.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
Experts estimate that about 50% of the people living with MS are impacted by depression. And left untreated, depression can darken your entire outlook on the world. It has a way of making everything less. We're going to explore MS and depression with my guest, Dr. Amy Sullivan, Director of Behavioral Medicine at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic. We're also talking about a study that may offer some good news about what seems to be a highly effective drug therapy for the 10,000 children who have been diagnosed with MS. We'll look at a nationwide study that indicates that women who are diagnosed with MS are reluctant to talk with their doctors about how MS might affect their work lives, their family planning choices, and even their personal relationships. And we'll look at the pending European Union approval of Ocrevus as a treatment for both Relapsing Remitting and Primary Progresive MS.
We've got the latest news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
This week's guests are Doctors Lee Hartswell and Katherine Heller, the co-primary investigators of the MS MOSAIC study from Duke University. Everyone listening to our podcast is eligible to participate in this study -- even if you don't have MS. And all of the data collection will be done through your smartphone, so you won't even have to leave home! More than just a study that will help us learn a lot about day-to-day living with MS, the MS MOSAIC study is a perfect example of how we're going to interact with our medical teams in the very near future.
We're also talking about the link between adolescent concussion and multiple sclerosis. We'll be looking at a new study that shows a connection between diet and exercise and MS pain. And we'll give you a heads-up on a free online event for caregivers. We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
Last week, more than 9,000 MS research scientists, physicians, and pharmaceutical industry experts attended ECTRIMS-ACTRIMS, the largest annual international MS research conference in the world. And we're devoting this week's podcast episode to talking about what they were talking about! Welcome to the RealTalk MS ECTRIMS Round-Up!
You'll find out about how the "official" number of people with MS in the United States is now more than double what it was before last week. We'll talk about some of the sobering socio-economic effects of MS on women. We'll look at new data from studies on treating Progressive MS, and we'll discuss some of the cutting-edge research study results that were announced while we try to identify some of the most promising new information that was released at ECTRIMS.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
This week, we're talking about MS Activism with the former mayor of Sacramento, California and current MS Activist, Heather Fargo. In last week's podcast, we talked about the prescription drug price transparency bill that was recently signed into law in California. Heather played an important role in the passage of that law, and we'll be talking to her about why that law is so important to the MS community. We're also going to talk about why it's important to use your power as an MS Activist, and how you can become an MS Activist, if you aren't one already.
The ECTRIMS-ACTRIMS joint conference starts tomorrow in Paris. It's the largest annual international MS research conference in the world, and the National MS Society and the International Progressive MS Alliance are hosting a webcast that you won't want to miss. We'll give you all the details and let you know how you can register for the webcast.
We're also talking about a newly announced national MS Registry that you and your neurologist can participate in. And we'll look at a new Lemtrada study that produced some really encouraging results.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
This week, RealTalk MS is all about MS research. We often hear about some of the important outcomes of MS research. New drugs, like Ocrevus, are introduced. New information, like the connection between gut bacteria and MS, is published. But how and where does an MS research project get its start? How does it get funded? How much multiple sclerosis research is actively taking place today? Jon's guest this week is Dr. Bruce Bebo, Executive Vice President of Research at the National Multiple Sclerosis Society. Since its inception, the National MS Society has invested more than $900 million dollars in MS research. Jon and Bruce discuss the key research priorities that the MS Society has identified, and then take you on a step-by-step "behind the scenes" look at exactly how the National MS Society evaluates and funds MS research. We'll also be talking about a new law in California that represents a giant leap forward in creating transparency in prescription drug prices. Over the past decade, the cost of prescription drugs for treating MS has risen at a sharply alarming rate. This new law may serve as a blueprint for other states to follow.
And we'll give you a heads-up on an upcoming live webcast from ECTRIMS in Paris (the largest conference in the world dedicated to the understanding and treatment of MS), where you'll be updated by a group of amazing researchers leading breakthrough Progressive MS research.
We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?
This week's episode focuses on some of the cutting edge research being done in the Progressive MS arena. Jon's guest, Dr. Tim Coetzee, Chief Advocacy, Services & Research Officer at the National Multiple Sclerosis Society, takes us through the work of the International Progressive MS Alliance.
Jon and Tim also talk about Ocrevus -- the very first drug to receive FDA approval for the treatment of Progressive MS, and what that means for future Progressive MS drug therapy.
We'll also be talking about a new research study at Duke University that will be taking full advantage of your iPhone to capture your individualized data, and we'll be letting you know how you can register for that study.
And last week, the FDA approved a higher dosage generic version of Copaxone. Generic Copaxone isn't really new...but the higher dosage is, and we'll be talking about why that might be good news for the thousands of people currently using Copaxone.
We've got news, views, interviews & breakthroughs in the MS world. Are you ready for RealTalk MS?
In this week's podcast, we're talking to Dr. Lilyana Amezcua, the lead investigator in a new research study that looks at how genetics and culture can impact the severity of MS among Hispanic-Americans.
We'll also talk about how -- without much fanfare -- the U.S. Senate unanimously passed the RAISE Family Caregivers Act last week.
We'll look at a new $10.6 million dollar study that's getting underway at the University of Nottingham, Nottingham University Hospitals in England, and a team from the Cleveland Clinic.
We'll find out what happened when investigators at the University of Munster in Germany looked at 47 published MS research studies and drew some conclusions about differences in cognitive impairment in people with relapsing-remitting MS and people with progressive MS.
Have researchers found a way to stop progression and even reverse progression in progressive MS? We'll talk about the encouraging initial results of a small study that's being expanded into a much larger study.
There's a lot to talk about this week on RealTalk MS!
Join host Jon Strum as he talks about the serious threat that the Cassidy-Graham healthcare bill poses to the MS community. Jon is joined by former Representative Donna Edwards, who worked to pass the Affordable Care Act in 2010, and then found herself diagnosed with MS in 2016.
We'll also be discussing the passage of an important piece of legislation in California which may end up leading the way for other states to create greater transparency in prescription drug pricing.
We'll talk about new MS research that is just getting underway, and we'll give you the latest about some exciting research results that are going to impact people dealing with progressive MS.
Get ready for some Real Talk about MS!
Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You’ll meet the scientists who are creating tomorrow’s MS treatments today. You’ll hear from the experts discussing how the latest tweaks and changes to our healthcare laws will impact your MS treatment. And we’ll be talking to the courageous MS warriors who are out there advocating on behalf of the MS community every day, as well as the men and women who are committed to living their best lives with MS and living their best lives as MS caregivers. If you're dealing with multiple sclerosis in your life -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS.