Ataxia, Did You Know?: Recent Episodes
Dana Mauro
Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.
Maximize your Doctor Visits Strategies to include before your next doctor visit to maximize your appointment time. An average appointment is 30 - 60 minutes. That’s not a lot of time. In this session you will learn strategies to make the most out of those minutes. #kNOwATAXIA #Ataxia
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ThoughtfulTuesday Exercise , Take a step, Stay tune to the end!
Dr. Jeremy Schmahmann explains Ataxia patients how important to exercise
kNOwATAXIA MGH Neurology
Dr Jeremy Schmahmann.. is head of the Ataxia Unit at Massachusetts General Hospital in Boston, Massachusetts MINDlink Foundation Ataxia patients: steps to take care of yourself to prevent infection COVID-19 https://youtu.be/c-ic6Wn9m0Q
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Website
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iTunes: podcast/k...https://itunes.apple.com/us/
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Website
https://ataxia.simplecast.com/episodes
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iTunes: podcast/k...https://itunes.apple.com/us/
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Website
https://ataxia.simplecast.com/episodes
Instagram https://www.instagram.com/ataxian_/
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Website
https://ataxia.simplecast.com/episodes
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AtaxiaFacts@gmail.com
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Thousands of families, friends, co-workers, neighbors, and communities come together each year to support NAF’s fight to improve the lives of people affected by Ataxia and their families. National Ataxia Foundation
I would just like to thank everyone involved in advocating for the National Ataxia Awareness Day Senate Resolution. We can accomplish big things when we are united. #kNOwATAXIA National Ataxia Foundation #Ataxia MINDlink Foundation
Hi #kNOwATAXIA Nation! Ever wonder what's impacting your ability to walk a straight line? Listen in to learn about the trouble maker most neurologists call 'the little brain'.
Exercise can be effective in the treatment and management of a number of chronic health conditions.
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NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families.
kNOwATAXIA #IAAD2019 National Ataxia Foundation
Email your photo to AtaxiaFacts@gmail.com
The Massachusetts General Hospital (MGH) Ataxia Unit was the first and is now the most active such clinic in the US, providing comprehensive care to patients across the age spectrum who have disorders of cerebellum and related conditions.
3 Faces of #Ataxia #kNOwATAXIA Are you Ataxia aware?
send in your photo to AtaxiaFacts@msn.com
I want to introduce you to Cameryn Cobb An inspirational young advocate for Ataxia. Listen in as Cameryn shares her story and what she is doing to make a difference.
MINDlink Foundation Rhode Island Ataxia Support GroupNational Ataxia Foundation Biogen #kNOwATAXIA #Ataxia #2019AAC
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Hi #kNOwATAXIA Nation. On this #thoughtfultuesday I want to introduce you to Lauren Sormani. An inspirational young advocate for Ataxia. Listen in as Lauren shares her story and what she is doing to make a difference.
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This Podcast from the annual NAF Meeting in Las Vegas, March, 2019 features Gil L’Italien, PhD, Head of GHEOR and Epidemiology and Melissa Wolfe Beiner, MD, Director of Research and Development and Ataxia Medical Lead, both from Biohaven Pharmaceuticals. They are with us to highlight some important and encouraging new data from an expanded analysis of their data from their first clinical trial of troriluzole in SCA patients. This clinical trial was the first registrational trial in SCA patients in the United States. In addition, they will discuss a new clinical trial, which is beginning this month at sites across the country, studying troriluzole in SCA patients with a new study design, optimized from data from their initial study, as well as data from the US Natural History Study. This work reflects a collaboration between Biohaven and numerous experts in the ataxia field across the country.
Andrew Rosen Announced as Executive Director #kNOwATAXIA
"I am honored to be joining the strong team at NAF, and look forward to building on the work that has impacted so many people with Ataxia since the organization was founded in 1957. Research supported by NAF continues to make progress in the search for treatments and an eventual cure for #Ataxia. It is a pivotal time for the Ataxia community, and I will be focused on accelerating NAF's growth in the coming years." Andrew Rosen
National Ataxia Foundation
2019AAC
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Hi #kNOwATAXIA Nation! Happy #thoughtfultuesday. Today, I’m sharing a podcast I did with my good friend Kyle Bryant. I was able to get a few minutes with him in Las Vegas at the Annual Ataxia Conference.
Listen in as we talk about Kyle’s new book, Shifting Into High Gear and learn about his motivation for writing it.
I think you’ll really enjoy hearing Kyle’s story. We discuss the rollercoaster of emotions experienced with the diagnosis of a rare disease, the impact this diagnosis has on the family, the importance of becoming an expert in that disease, the road to acceptance (not always a straight line) and the realization that your involvement can make an impact.
Please enjoy and let me know your thoughts in the comments below.
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Hi kNOwATAXIA Nation -
In this podcast I introduce you to Joel Sutherland, the Development Director for the National Ataxia Foundation. Joel explains his role at the foundation and provides updates on several initiatives like the Walk N' Rolls, Go the Extra Mile campaign, the Annual Research Drive and more.
I plan to feature a coffee talk with Joel every month to keep you up to date on these initiatives and others.
Enjoy the podcast and if you haven’t already, subscribe to the channel to make sure you don’t miss out.
www.Ataxia.org
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How an Ataxian preps for the holidays and finds the joy in the season.
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Bataan Memorial Death March. Ed and Mike have been battling #Ataxia and are now taking on another great challenge with the March. Right now is your opportunity to support them too! Be a part of the Joint Mission Bataan- an operation to raise awareness of #Ataxia.
The Bataan Memorial Death March is a 26.2 mile hike through the high desert of the White Sands Missile Range in New Mexico. The march is a memorial in honor of the thousands of soldiers who served in the Philippine Islands during World War II.
There are tons of different ways to get involved! You can create your own social media posts, share NAF's posts, start a fundraising team, or contribute to the Mission yourself. We want to spread the word about Mike, Ed, and the fight against Ataxia
kNOwATAXIA #JMB #JMB1 #JMB2 #JMB8 National Ataxia Foundation
https://app.mobilecause.com/vf/JMB
PART 1 of 2
Dr. Schmahmann and Melissa Biener sit down with Did You Know to talk ATAXIA. WE NEED YOU!! You play a pivotal role in Ataxia research! Without your input advances can not be made. Listen in as Mellisa Biener and Dr Schmahmann talk about the importance PROM in drug trials and the value of participating in a natural history study. Live from the 11th New England walk and roll in Bristol Rhode Island.
@Biohaven @mindlink @naf_ataxia
Jeremy D. Schmahmann, MDProfessor of Neurology, Harvard Medical SchoolFounding Director, Ataxia UnitCognitive Behavioral Neurology Unit Director, Laboratory for Neuroanatomy and Cerebellar NeurobiologyDepartment of Neurology, Massachusetts General Hospital
Melissa Wolfe Beiner, MD
Biohaven Pharmaceuticals
Assistant Director of Research and Development
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You signed up for the Sanford Cords registry yet? What are you waiting for ? Listen in to my conversation with Austin letchur from CORDs. Will answer some of the most common questions in signing up for the registry ... Take a listen Remember Nathional Ataxia Foundation Webinar with CORDs September 18th with Sue Hagen National Ataxia Foundation MINDlink Foundation Biohaven Pharmaceuticals MGH Neurology
…
Thank You Nelia Aguiar and family Azorean Pride Team raises funds and awareness of SCA3( Machado-Joseph Disease) a hereditary type of Ataxia in people of Portuguese descent. Did You Know, Dana Mauro, was invited to speak at their fundraising event last weekend. They raised $12,447 for Ataxia! Way to go Azorean Pride! You are truly inspirational!
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Listen in as Kara Eichelraut explains to Dana Mauro about the value of Reata Pharmaceutical companies interacting with patients.
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Ataxia impacts people across the globe. Ever wonder what it would be like to have ataxia and live outside of the United States. Listen in as Cory Hannan explains the life of an Ataxian in Latin America
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Dana Mauro Up close and personal with @KyleaBryant. Learn about what Kyle's been up to, the inspiration behind his newly released movie the Ataxian, his mission to raise awareness and his personal ataxia journey.
@ataxiadidyouknow
About the Movie
https://itunes.apple.com/us/movie/the-ataxian/id1336806410
The Ataxian examines the life of Kyle Bryant, a man diagnosed with the fatal progressive neuro-muscular disorder, Friedreich’s ataxia. Despite being unable to walk, Kyle, along with a team of friends, attempt the most grueling bicycle race in the world—The Race Across America. Kyle’s determination and unbreakable spirit carry them through sweeping landscapes and a life-changing cross-country trip.
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt
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https://soundcloud.com/user-536040137-843024175
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Website
http://www.rideforjohn.org/
https://www.instagram.com/ataxian_/
https://twitter.com/johnnyjots
Do you know what Schmahmann’s syndrome is? It can affect someone with Ataxia. Listen in to learn more with Dana Mauro
iTunes
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https://soundcloud.com/user-536040137-843024175
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Website
http://www.rideforjohn.org/
https://www.instagram.com/ataxian_/
https://twitter.com/johnnyjots
Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driven and focused group and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet.
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt
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https://soundcloud.com/user-536040137-843024175
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Website
http://www.rideforjohn.org/
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https://twitter.com/johnnyjots
Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved.
Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)!
If you have any questions, please do not hesitate to email us at cerebellum@mgh.harvard.edu. You can also reach out to our Research Coordinator, Samantha Pierce, at 617-726-4961. Below is the link to the surveys. One is for participants diagnosed with Ataxia, and one is for relatives of these participants. Make sure you are taking the correct survey:
PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link
RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link
Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th.
Thank you again for your participation.
Dr Schmahmann
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https://twitter.com/johnnyjots
DidYouKnow Ataxia?
Where to go to get reputable Ataxia information
StumbledontoAtaxia
Ataxia
IAAD2018
DYK
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt
SoundCloud
https://soundcloud.com/user-536040137-843024175
https://www.facebook.com/ataxiadidyouknow/
Website
http://www.rideforjohn.org/
https://www.instagram.com/ataxian_/
https://twitter.com/johnnyjots
Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC
DidYouKnow Ataxia?
Where to go to get reputable Ataxia information
StumbledontoAtaxia
Ataxia
IAAD2018
DYK
iTunes
itunes.apple.com/us/podcast/know-…/id1312495222?mt
SoundCloud
@user-536040137-843024175
www.facebook.com/ataxiadidyouknow/
Website
www.rideforjohn.org/
www.instagram.com/ataxian_/
Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC
Podcast Show Notes
DidYouKnow Ataxia?
Where to go to get reputable Ataxia information
StumbledontoAtaxia
Ataxia
IAAD2018
DYK
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt
SoundCloud
https://soundcloud.com/user-536040137-843024175
https://www.facebook.com/ataxiadidyouknow/
Website
http://www.rideforjohn.org/
https://www.instagram.com/ataxian_/
https://twitter.com/johnnyjots
Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC
Podcast Show Notes
DidYouKnow Ataxia?
Where to go to get reputable Ataxia information
StumbledontoAtaxia
Ataxia
IAAD2018
DYK
iTunes
https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt
SoundCloud
https://soundcloud.com/user-536040137-843024175
https://www.facebook.com/ataxiadidyouknow/
Website
http://www.rideforjohn.org/
https://www.instagram.com/ataxian_/
https://twitter.com/johnnyjots
Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.
So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a collection of any kind of tests that you’ve had, any kind of notes from a doctor, hospital notes, any kind of imaging results…. So it’s all your medical information in one place. And i want to show you mine… So this is what my medical binder looks like.. It’s not the prettiest thing but you guys can make these however you want, you can really get creative with these…. Let me show you inside...inside this medical binder, I have mine tabbed out, so you can see here that it’s all tabbed and what’s contained in each tab is all the information for that year. So mine is kept in chronological order by year and it’s all the information about John since he’s been diagnosed with Ataxia. So You can see it’s getting quite thick. I’m probably going to end up with multiple of these and if that happens i’ll just date them. I’ll put the date here or on the spine so that when i’m looking at the notebook I can pick the right one What this is so awesome for is that now all of your information is in one spot. So when you go to the doctor you can take your medical binder and your medical journal and be out the door And then you can answer any question that your doctor might have and you don’t have to keep everything up here anymore, you know that was the biggest relief for me I thought that it was very difficult to recall things when the doctor was asking and give the doctor the most accurate information so with the binder i feel that that really helps me I would encourage you guys to consider it. I love it I think it has really helped to keep me organized and it has helped me to give the doctor all the information that they need to know Now something else i want to mention……. Actually 2 things I want to mention 1 is within each of the tabs i have a cover sheet which is a summary of everything in that tab and then i also create a summary sheet for the entire notebook so that i list out all the tabs and then all the information within those tabs This helps me find things quickly when I’m at the doctors appointments. Say for instance that the doctor says when was the last cat scan? I quickly look at my summary sheet see when it was and if the doctor wants to know the results of that I simply go to that tab and pull out the results sheet So again, please consider it, and leave your comments you know do you think that this is a good idea, are you already doing this and are there things that you’re doing that I haven’t mentioned….. If there are, please leave them in the comments because we can all benefit from that, we can all learn from that Have a great rest of your day….. Enjoy your Tuesday and I’ll see you guys on Wednesday And don’t forget to like our page so you can get all the latest updates and all the latest did you know videos
Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.
Research is at a pivotal time for Ataxia – with one medication in clinical trial and more in the pipeline. We received 84 applications for Ataxia research grants this year! Work with us to get as many of them funded as possible. We want to give researchers the support that they need, so that they can look for the answers that we need. Join NAF’s 2017 Research Drive!
Make a contribution today
https://ataxia.donorpages.com/2017ResearchDrive/
Dana Mauro talks about:
National Ataxia Foundation believes that this type of request for study subjects will be made in the future for many, and hopefully, all forms of ataxia
what comes to mind when you think of the invisible aspects of Ataxia:
Fatigue
Guilt
Difficulty maintaining relationships
Difficulty multitasking and keeping track of things
Emotions
Overstimulation
Fatigue:
Exhausted – need to rest frequently during the day – feel guilty
Live by the clock – prioritize your energy
Speech not understood; exhausting to repeat myself
Eating is exhausting – takes a lot of energy not to choke
Use assistive devices to:
Did You Know ? Annual Ataxia Conference (005)
NAF coordinates the world’s largest annual Ataxia gathering – the Annual Ataxia Conference (AAC). For three days, conference attendees meet and learn from world-leading Ataxia researchers and clinicians, network, and reunite with old friends. Hundreds of people – from patients, to caregivers, to medical professionals – travel from all over the world to attend the conference
What is Ataxia? Did you know this? This is an Ataxia Awareness campaign. Please tune in daily for a new fact to share with friends and family.