Connecting ALS: Recent Episodes

ALS Association

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

This week, Jeremy welcomes Kathleen Sheehan, Vice President of Public Policy at The ALS Association, for an update on the National Academies of Sciences, Engineering, and Medicine Committee’s action plan to make ALS livable and to accelerate the search for treatments.

Learn more about the NAS working group at https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-life

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Dr. Kelly Gwathmey, Chair of Neuromuscular Neurology at Virginia Commonwealth University, about recent research showing racial disparities in the time it takes to confirm an ALS diagnosis.

Learn more about the research conducted at VCU at https://www.sciencedirect.com/science/article/pii/S0022510X20303919

For more information about the importance of a timely diagnosis, go to https://www.als.org/thinkals/benefits-timely-diagnosis

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy kicks off National Wellness Month with Melissa Enfinger from The ALS Association’s Care Services team.

To participate in research into the mental health and wellness needs of people living with ALS, go to https://milwaukee.qualtrics.com/jfe/form/SV_4I9CXsunR8LrTYa

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy catches up with Brooke Eby, a social media influencer living with ALS, about her efforts to raise awareness of ALS and critical funding for ALS research, and how she uses levity and humor along the way.

Find ways to follow Brooke’s journey at https://hoo.be/limpbroozkit

Check out Brooke’s appearance on Today at https://www.today.com/video/meet-the-woman-facing-als-with-heart-and-humor-174780997741

Listen to Brooke’s conversation with Lorri Carey at https://imdyingtotellyoupodcast.com/uncategorized/fighting-als-with-humor-brooke-eby/

To learn more about August Advocacy Action Month go to https://www.als.org/advocacy/action-center

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy explores some of the ongoing fights to make insurance work more effectively for people living with ALS. He is joined by Shannon Todd from The ALS Association’s Care Services team and ALS advocate Katie Adams, who updates us on her ongoing fight for insurance coverage of her power wheelchair.

Learn more about Katie Adams’s story at https://www.als.org/blog/katie-adams-fighting-change-everyone-als

Read about the support available to help navigate insurance barriers at https://www.als.org/blog/katie-adams-fighting-change-everyone-als

For more information on the ways insurers erect barriers to access at https://www.als.org/blog/breaking-barriers-fight-make-health-care-affordable-and-accessible

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy explores some of the barriers insurers establish that make it difficult to use insurance for essential health care needs, and talks to Kara Nett Hinkley, National Vice President of State Advocacy at The ALS Association, about some of the work being done to break down those barriers.

Learn more about the ALS Focus results at https://www.als.org/research/als-focus/survey-results/survey-6-results

Become an advocate at https://als.quorum.us/sign_in/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy reflects on some recent news in the ALS community and looks back on a discussion of the challenges of traveling while living with ALS.

Read the National Geographic article on the ALS Ice Bucket Challenge at https://www.nationalgeographic.com/science/article/als-ice-bucket-challenge-research-impact

Find the New Yorker article (password required) on the FDA’s path to approving AMX0035 at https://www.newyorker.com/magazine/2023/06/26/relyvrio-als-fda-approval

Learn more about The ALS Association’s new research grant programs at https://www.als.org/stories-news/new-grants-seek-optimize-als-care-and-improve-quality-life

This week, Jeremy talks to Calaneet Balas, President and CEO of The ALS Association and Chair of the International Alliance of ALS/MND Association, about the state of the global fight against ALS.

Learn more about the fundamental rights of people living with ALS/MND at https://www.als-mnd.org/support-for-pals-cals/pals-and-cals-rights/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, we look at the latest headlines in the fight against ALS and commemorate Juneteenth by looking back on a discussion of racial disparities in ALS.

Read the inspiring story of Matt and Laurel Cluthe at https://alstexas.org/als-legacy-and-baseball-the-cluthe-family-story/

Urge your congressmen to support the Justice for ALS Veterans Act at https://als.quorum.us/campaign/48277/

Learn more about Lou Gehrig Day 2023 at https://www.als.org/blog/als-community-and-major-league-baseball-come-together-celebrate-lou-gehrig-day

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy welcomes back Dr. Melinda Kavanaugh to learn about the Global Neuro YCare Foundation and efforts to support young caregivers around the world.

Find resources to support young caregivers at https://www.als.org/navigating-als/resources/Youth-Education

Read about Dr. Kavanaugh’s work to bring YCare to South Africa at https://www.als.org/blog/als-around-globe-help-young-caregivers-south-africa

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy talks to Guðlaug Gísladóttir, a presenter at this year’s Allied Professionals Forum and a dietician at the National University Hospital of Iceland, about ways to make meal times and eating more enjoyable for people living with ALS.

For tips on maintaining good nutrition while living with ALS go to https://www.als.org/navigating-als/resources/maintaining-good-nutrition-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy talks to Dr. Colleen O’Connell, Medical Director at New Brunswick’s Stan Cassidy Centre for Rehabilitation and Clinical Research Director of University of New Brunswick Institute of Biomedical Engineering, who delivered the keynote address during the International Alliance of ALS/MND Associations’ annual meeting, talking about the right of everyone living with ALS to a quality of life.

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy checks in from the International Alliance of ALS/MND Associations for an update on access to high quality care around the world and talks to Maureen Clark, Director of Business Intelligence at The ALS Association about efforts to build a clinic locator map.

Learn more about multidisciplinary care for people living with ALS at https://www.als.org/local-support/certified-centers-clinics

Find an ALS clinic near you at https://www.als.org/local-support/certified-centers-clinics/locator

Today, Jeremy kicks off a week of coverage in conjunction with the International Alliance of ALS/MND Associations’ meeting and the Allied Professionals forums by connecting with Calaneet Balas, President and CEO of The ALS Association, and Chair of the International Alliance.

You can follow The International Alliance of ALS/MND Associations on Twitter at https://twitter.com/ALSMNDAlliance

Keep up with The International Alliance of ALS/MND Associations via Facebook at https://www.facebook.com/TheIntlAlliance

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes members of Her ALS Story to talk about the power of connecting with people who are on a similar journey while living with ALS.

Learn more about Her ALS Story at https://heralsstory.org/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy is joined by Gerald McCormick, a veteran living with ALS former state lawmaker in Tennessee, reflecting on the connection between ALS and military service and digging into some ways to engage in advocacy to move the fight against ALS forward.

Learn more about the connection between ALS and military service at https://www.als.org/navigating-als/military-veterans

Find the full report on ALS and the military at https://www.als.org/sites/default/files/2020-04/navigating-als_military-veterans_als-in-military-white-paper_0.pdf

Read stories of veterans who have been impacted by ALS at https://www.als.org/navigating-als/military-veterans/wall-of-honor

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes Kristina Woody on to talk about her role as a caregiver to her husband, Lamar, and to reflect on what more we can do to support family caregivers.

For more information on how to support caregivers, go to https://www.als.org/navigating-als/for-caregivers

Learn more about caregiver needs at https://www.als.org/research/als-focus/survey-results/survey-3-results

Read about the Woody family at https://www.als.org/blog/woody-family-living-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Daniel Cramer from The ALS Association advocacy and public policy team and Jan Vasiloff, a leading advocate of the Justice for ALS Veterans Act about the fight to make sure surviving spouses have access to the benefits they deserve.

Tell your member of Congress to support the Justice for ALS Veterans Act by going to https://als.quorum.us/campaign/42907/

Learn more about the Justice for ALS Veterans Act at https://www.als.org/stories-news/als-association-urging-congress-act-justice-als-veterans-act

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Lamar Woody, who was diagnosed with ALS in 2018, about his life, his family and what he’s doing to help create a world without ALS. To follow the Woody family’s story over the coming weeks, check out The ALS Association’s blog at https://www.als.org/blog.

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Pam Knott, Vice President of Data and Technology at The ALS Association, to learn how data is helping make ALS a livable disease and pointing the way to treatments and cures.

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Calaneet Balas, President and CEO of The ALS Association about the approval of RELYVRIO, formerly known as AMX0035, for the treatment of ALS and looks ahead to the fight for access to this and other ALS treatments in the pipeline.

Learn more about RELYVRIO at https://www.als.org/navigating-als/living-with-als/fda-approved-drugs/amx0035

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes Dr. Devesh Pant to the show to talk about new developments in ALS research.

Learn more about the Milton Safenowitz Postdoctoral Fellowship Program at https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Alisa Brownlee, an Assistive Technology Specialist who helps people with ALS adapt their homes to make them safe and livable.

Learn more about home modifications at https://www.als.org/navigating-als/living-with-als/adapting-your-environment

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy looks back on the role people living with ALS and leading ALS clinicians played in convincing an FDA advisory committee’s vote to support the approval of AMX0035 to treat ALS.

To call on the FDA to approve AMX0035 go to als.org/fda

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Kathleen Sheehan, Vice President of Public Policy at The ALS Association, and Ashley Smith, Director of Advocacy at the Association, to learn about a new fight to make sure seat elevation is covered by Medicare and for an update on the fight for FDA approval of AMX0035.

Tell Medicare why seat elevation matters to you at https://als.quorum.us/campaign/seatelevation/

Call on the FDA to approve AMX0035 at https://als.quorum.us/campaign/FDA/

Become an advocate at https://als.quorum.us/register/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy revisits testimony provided by ALS advocates and ALS Association leaders at a recent public form to consider ICER’s flawed analysis of AMX0035 and oral edaravone.

Watch the public forum in its entirety at https://www.youtube.com/watch?v=iqmXcxgkMPY&t=13s

Learn more about the fight for access to therapies at als.org/icer

Learn more about Steve Kowalski at https://www.als.org/blog/theres-still-lot-life-be-lived-steve-kowalskis-story

Read some of Sunny’s story at https://www.als.org/blog/sunny-brous-erasmus-long-were-here-were-together

Follow Sunny’s journey at https://sunnystrong.com/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy is joined by Kara Nett Hinkley, Vice President of State Policy for The ALS Association, and Patricia Peak, Care Services Director for the Association based in Louisville, KY., to talk about the work being done to expand access to Medicare supplemental insurance plans regardless of where you live.

Learn more about navigating Medicare at https://www.als.org/navigating-als/financial-information/medicare-information

Sign up to become an advocate at https://als.quorum.us/register/

For more information on the ALS Focus survey platform go to alsfocus.org

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy welcomes Dr. Paul Larkin, Director of Research at The ALS Association, to learn about the FDA’s recently released Action Plan for Rare Degenerative Diseases, including ALS.

To learn more about The ALS Association’s response to the action plan, go to https://www.als.org/stories-news/seeking-clarity-and-urgency-fdas-action-plan

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Maceo Carter about the challenges of air travel while living with ALS, and checks in with Heather Ansley of the Paralyzed Veterans of America to learn about some legislation in Congress that can help reduce some of the burdens of traveling while living with mobility challenges.

Become an advocate at https://als.quorum.us/register/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dr. Stephen Goutman, Director of the Pranger ALS Clinic and Associate Professor of Neurology at the University of Michigan, about ALS risk factors and the burgeoning science of preventing ALS.

Learn more about research being done into preventing ALS at https://www.als.org/research/funding-opportunities/prevention-grants-2022

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy continues his conversation with Dr. Neil Thakur, chief mission officer at The ALS Association, about the latest developments in the fight for approval of and access to AMX0035 and explores the Association’s formal objections to ICER’s draft analysis.

Learn more about efforts to make sure flawed and discriminatory data isn’t used to erect barriers to access at als.org/icer

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Given the FDA’s decision to reconvene the Peripheral and Central Nervous System Drugs Advisory Committee to discuss the New Drug Application for AMX0035 for the treatment of amyotrophic lateral sclerosis, Jeremy welcomes back Dr. Neil Thakur, chief mission officer at The ALS Association, for the latest.

To urge the FDA to approve AMX0035 as quickly as possible go to als.org/fda

To read the letter from several dozen ALC clinical experts calling on FDA to make AMX0035 available as a treatment option go to https://www.als.org/stories-news/several-dozen-prominent-als-clinicians-call-fda-approve-amx0035

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy is joined by Dr. Sarah Parvanta, director of ALS Focus, and Stuart Obermann, vice president of organizational readiness at The ALS Association, to dig into the challenges people with ALS face accessing equipment they need to address mobility challenges and what can be done to reduce barriers to access.

Learn more about ALS Focus at alsfocus.org

Learn more about ALS and mobility at https://www.als.org/navigating-als/living-with-als/therapies-care/mobility-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Mark Schoenbaum about his struggles getting medically necessary care through his Medicare Advantage Program and then turns to Peggy Lighe, a health care advocate who is helping to lead the fight to pass legislation to modernize Medicare Advantage help reduce delays in care for beneficiaries.

Learn more about the Regulatory Relief Coalition’s work to pass the Improving Seniors’ Timely Access to Care Act at regrelief.org

Find the Inspector General’s report on prior authorizations at https://oig.hhs.gov/oei/reports/OEI-09-18-00260.asp

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy provides an update on the fight for approval of AMX0035, including an extended review period at the FDA and how new data and approval in Canada puts more pressure on the FDA to act quickly. He also talks to Dr. David Vequist, director of the Center for Medical Tourism Research at the University of the Incarnate Word, about the history of medical and pharmaceutical tourism around the world.

Learn more about the Center for Medical Tourism Research at https://my.uiw.edu/medical-tourism/index.html

To email the FDA and urge them to approve AMX0035 quickly, go to als.org/fda

Read more about the potential impact on FDA delay at https://www.wsj.com/articles/a-lot-to-figure-out-als-patients-weigh-travel-to-canada-to-get-drug-for-deadly-illness-11655906422?mod=hp_lista_pos2

To read the letter signed by 38 ALS clinical experts urging approval of AMX0035, go to https://www.als.org/stories-news/several-dozen-prominent-als-clinicians-call-fda-approve-amx0035

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dave Zook, chair of Faegre Drinker Consulting and an advisor for The ALS Association, about the process of getting new drugs covered by Medicare, the VA and insurance companies.

Join the fight to get emerging drugs approved at als.org/fda

Watch a video recording of this episode at https://www.neurologylive.com/view/connecting-als-how-new-drug-coverage-decisions-are-made

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Dr. Neil Thakur, chief mission officer at The ALS Association, and Melanie Lendnal, the Association’s senior vice president of policy and advocacy, to get an update on the fight to make AMX0035 available, preview the 2022 ALS Association Advocacy Conference, and dig into the role advocates play in making ALS livable.

Send an email to the FDA telling them to approve AMX0035 as soon as possible at www.als.org/fda

Register for The ALS Association’s 2022 Advocacy Conference at https://www.als.org/advocacy-conference

Learn more about the tofersen trial results at https://www.als.org/stories-news/biogen-announces-promising-findings-tofersen-trial

For the latest on the fight for approval and access to AMX0035, go to https://www.als.org/stories-news/fda-extends-timeline-amx0035-review

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy reflects on the legacy of Lou Gehrig and revisits a conversation with Larry Falivena, a member of The ALS Association’s board of trustees, on the genesis of Lou Gehrig Day.

Learn more about Lou Gehrig Day at https://www.als.org/4ALS

Check out how communities across the country commemorated Lou Gehrig Day in 2021 at https://www.als.org/lou-gehrig-day-photos

For more on MLB’s support of ALS go to https://www.mlb.com/mlb-community/4als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy wraps up ALS Awareness Month by talking to Ellen and Lorenzo Trujillo about living with ALS and taking on life one day at a time.

Read more about Ellen and Lorenzo at https://www.als.org/blog/ellen-and-lorenzo-trujillo-living-als-one-day-time

The opportunity to tell the FDA to approve AMX035, referenced in this episode, can be found at https://www.als.org/blog/ellen-and-lorenzo-trujillo-living-als-one-day-time

To sign up for the 2022 advocacy conference, referenced in this episode, go to https://www.als.org/stories-news/join-us-2022-virtual-advocacy-conference

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Jim Essey, a business executive and board member of the American Brain Foundation whose family established the Sheila Essey Award for ALS Research. Jim reflects on the progress made in ALS research over the years and shares why he sees hope on the horizon.

Learn more about the Sheila Essey Award for ALS Research at https://www.als.org/research/research-we-fund/fellowships/sheila-essey-award-als-research

Learn more about ALS research at https://www.als.org/research/research-we-fund

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dr. Melinda Kavanaugh about her research into the sleep patterns of youth caregivers, programs that are available to help kids who serve as caregivers, and some new research into ALS and stigma.

Resources to help young caregivers can be found at https://www.als.org/navigating-als/resources/Youth-Education

Help kids in your community join the fight against ALS at https://www.als.org/get-involved/als-youth-challenge

For more information about the YCare program go to https://www.als.org/blog/training-program-gives-young-caregivers-confidence-peer-support

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy kicks off ALS Awareness month by sitting down with Scott Kauffman, chairman of The ALS Association Board of Trustees, to talk about his connection to ALS and his vision for leading the fight against the disease.

Find ways to get involved in the fight against ALS at https://www.als.org/get-involved

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Disease to talk about their recent report on the economic burden of rare diseases.

To read the EveryLife Foundation’s report, go to https://everylifefoundation.org/burden-study/

Learn more about navigating the financial harms associated with ALS at https://www.als.org/navigating-als/financial-information

Sign up to become an advocate at https://www.als.org/advocacy

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Lindsay Litterini about why she volunteers in the fight against ALS and checks in with Stephanie Dobrak, executive director for the Alliance for Connected Care, to learn what advocates can do to protect access to telehealth.

Learn more about Lindsay’s connection to ALS at https://www.als.org/blog/lindsay-litterini-why-i-am-als-volunteer

To stay up to date on The ALS Association’s public policy priorities, go to https://www.als.org/advocacy/our-priorities

Sign up to become an advocate at https://als.quorum.us/register/

Find ways to volunteer at https://www.als.org/get-involved/volunteer-fight-against-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Daniel Cramer, associate director of public policy initiatives at The ALS Association, who explains why he is signing a petition calling on insurers to ban the use of discriminatory value assessments that limit access to ALS drugs.

Learn more about the ICER petition at als.org/icer

Sign the petition at https://als.quorum.us/campaign/ALSdrugaccess/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dr. Matthew Kiernan, a neurologist at the Brain and Mind Centre at the University of Sydney in Australia and the recipient of the 2022 Sheila Essey Award about the state of ALS research.

Learn more about the Sheila Essey Award for ALS Research at https://www.als.org/research/research-we-fund/fellowships/sheila-essey-award-als-research

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dr. Kuldip Dave, vice president of research at The ALS Association to explore clinical trials – how they work, who can participate in trials, and what is being done to create more trials at more locations that include more people.

To learn more about clinical trials for people living with ALS go to https://www.als.org/research/clinical-trials-for-patients

Find out more about the investigational trials funded through The ALS Association’s Clinical Trials Awards Program at https://www.als.org/blog/four-trials-selected-als-associations-clinical-trials-awards-program

Learn more about the projects recently funded through the Lawrence & Isabel Barnett Drug Development Program at https://www.als.org/stories-news/six-drug-development-projects-awarded-nearly-3-million-als-association

For more information about how the thinkALS tool is speeding up the time to diagnosis, go to https://www.als.org/thinkals

Find out more about genetic testing at https://www.als.org/understanding-als/who-gets-als/genetic-testing

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dr. Shannon Terrell, a physical therapist who has worked in an ALS multidisciplinary care setting about ways to maintain mobility while living with ALS and her role in a new series of educational videos produced by The ALS Association.

Find the educational videos on mobility and independence at https://www.als.org/navigating-als/living-with-als/therapies-care/mobility-als/strategies-maintaining-mobility

For insight on maintaining mobility and independence while living with ALS, check out https://www.als.org/blog/living-als-maintaining-your-independence-mobility-declines

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks federal appropriations and the fight to secure funding for ALS research with Denise Bailin, director of government affairs and policy at The ALS Association. He then pivots to learn more about efforts to fund the fight against ALS at the Minnesota statehouse.

Learn more about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

Sign up to become an advocate at https://als.quorum.us/register/

Learn more about the public policy push in Minnesota at https://als.quorum.us/campaign/MNapprops2022/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Dr. Alison Bateman-House, a medical ethicist and member of NYU Langone’s Working Group on Compassionate Use and Preapproval Access, to uncover the work being done to expand the ethical allocation of drugs that are currently in development.

Learn more about the Working Group on Compassionate Use and Preapproval Access at https://med.nyu.edu/departments-institutes/population-health/divisions-sections-centers/medical-ethics/research/working-group-compassionate-use-preapproval-access/frequently-asked-questions

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy checks in with Dr. Neil Thakur, The ALS Association’s Chief Mission Officer, for an update on implementing the ACT for ALS and digs into the latest developments on reviews of AMX0035 by the FDA and ICER.

Learn more about ICER’s review of AMX0035 at https://www.als.org/icer

To hear more about the path to bringing AMX0035 to people with ALS, check out https://www.connectingals.org/episodes/fight-for-amx0035-approval-moves-forward-with-amylyx-nda-announcement

Sign up to become an advocate and join the fight to full fund ACT for ALS at https://als.quorum.us/register/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy talks to Dr. David Walk, professor of neurology at the University of Minnesota and editor of the Clinical Handbook of Neuromuscular Medicine, about primary lateral sclerosis and some of the similarities and key differentiators between PLS and ALS.

To learn more about the process of diagnosing ALS, go to https://www.als.org/understanding-als/symptoms-diagnosis

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Sarah Trott and talks to JoCarolyn Chambers, care services manager at The ALS Association, for insight on how to handle and talk about grief and loss.

For more advice from JoCarolyn on processing grief and loss go to https://www.als.org/blog/grief-loss-exploring-emotional-impacts-als

Learn more about Sarah at https://www.sarahtrottmedia.com/about

Check out Sarah’s previous appearance on Connecting ALS at https://www.connectingals.org/episodes/supporting-young-caregivers

If you are a caregiver and want to join Sarah’s caregiver community on Facebook, go to https://www.facebook.com/groups/144164414015354

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes Dr. Neil Thakur, chief mission officer at The ALS Association, and Sara van Geertruyden, executive director at the Partnership to Improve Patient Care, to discuss a cost-effectiveness review of AMX0035 by ICER and criticisms of the organization’s methodology that has been called discriminatory toward people with disabilities.

For more information on the ICER review process to go als.org/icer

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Corrie Libby, care services coordinator at The ALS Association MN/ND/SD Chapter, about making sure people with ALS have access to the best care available.

Learn more about The ALS Association’s network of multidisciplinary clinics at https://www.als.org/local-support/certified-centers-clinics

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy looks to the year ahead in ALS research with Dr. Kuldip Dave, Vice President of Research at The ALS Association, and digs into a drug rescue analysis project with Dr. Dave Ennist, CEO and Chief Science Officer at Origent Data Sciences.

Learn more about The ALS Association’s research program at https://www.als.org/research

To get involved in ALS research go to https://www.als.org/research/how-can-i-get-involved-research-if-i-am-ineligible-clinical

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Dr. Neil Thakur, chief mission officer at The ALS Association, to look ahead to the year in advocacy and to dive deeper into the successful push to enact the ACT for ALS Act. We also reflect back on our conversation with Rep. Mike Quigley (D-Ill.) on the impact of ALS advocates.

Sign up to become an advocate at https://als.quorum.us/register/

Stay on top of The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy explores the work being done to expand access to high quality care with Dr. Neil Thakur, chief mission officer at The ALS Association, and Lori Banker-Horner, the Association’s director of clinical programs.

Learn more about The ALS Association’s clinical network at https://www.als.org/local-support/certified-centers-clinics

Read more about multidisciplinary care and get the latest on the clinical footprint at https://www.als.org/blog/extending-survival-people-living-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy puts a bow on the year that was and looks ahead to 2022 with ALS Association President and CEO Calaneet Balas.

Learn more about the impact the Association was able to have in 2021 at https://www.als.org/2021-year-end-report

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy checks in on the global fight against ALS with guest co-host Cathy Cummings, Executive Director of the International Alliance of ALS/MND Associations. He also interviews Jessica Mabe from the Alliance for a report from the group’s annual meeting and the Allied Professionals Forum.

To learn more about the Alliance Meeting, go to https://www.als-mnd.org/events-programs/alliance-meeting/

Learn more about the Allied Professionals Forum at https://www.als-mnd.org/events-programs/alliance-meeting/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy digs into new survey data on the ALS community’s use of telehealth with guest co-host Larry Falivena, a member of The ALS Association’s Board of Trustees and the ALS Focus Patient and Caregiver Advisory Committee, and Dr. Sarah Parvanta, director of ALS Focus.

To dive deeper into the results of the ALS Focus telehealth survey go to https://www.als.org/research/als-focus/survey-results/survey-4-results

Sign up to participate in ALS Focus at https://www.neuroserver.org/als-focus/Home/login

Find data from past ALS Focus surveys at https://www.als.org/research/als-focus/survey-results

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Calaneet Balas, president and CEO of The ALS Association, to look back on the progress made in the fight against ALS in 2021 and the commitment to continue to do Whatever it Takes to deliver hope and impact.

Learn more about the impact the Association was able to have in 2021 at https://www.als.org/2021-year-end-report

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Dr. Heidi Tarr Henson, a life coach and consultant who was diagnosed with ALS in 2021, who discusses in-the-moment advocacy, teachable moments and the power of setting boundaries with ourselves and others.

Read Dr. Henson’s blog post on setting boundaries at https://www.als.org/massachusetts/blog/roles-redefined-als-advocate-and-teacher-guest-blogger-dr-heidi-tarr-henson

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Ken Paves, a celebrity hair stylist and entrepreneur who is the primary caregiver for his mother to dig into some of the challenges of being a caregiver. Later, Jeremy talks to Nancy LeaMond from AARP about some of the ongoing public policy fights that will provide additional support for family caregivers.

Learn more about caregiver needs at https://www.als.org/research/als-focus/survey-results/survey-3-results

Sign up to participate in the current ALS Focus survey at https://www.neuroserver.org/als-focus/Home/login

Find resources for caregivers at https://www.als.org/navigating-als/for-caregivers

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Ashely Smith, The ALS Association’s Director of Advocacy, and talks to Rep. Mike Quigley (D-Ill.) to discuss the unanimous subcommittee vote to advance ACT for ALS in the House. Ashley also provides an update on the fights for expanded access to telehealth and increased veterans benefits for people with ALS and their families.

To learn more about ACT for ALS, go to https://www.als.org/blog/great-news-house-subcommittee-unanimously-approves-act-als

For more information on the connection between ALS and military service go to https://www.als.org/navigating-als/military-veterans

To participate in ALS Focus, go to https://www.neuroserver.org/als-focus/Home/login

Dive deeper into the Associations work to get ACT for ALS passed into law and listen to an earlier discussion on ways to speed up the drug development process https://www.connectingals.org/episodes/next-steps-in-speeding-up-the-drug-development-process

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Steve Becvar, executive director of The ALS Association’s Greater San Diego Chapter, to kick off National Family Caregivers Month. Jeremy also talks to Ann Larson, who was a caregiver to her husband during his fight against ALS, about the challenges of being a caregiver, and to Jennifer Myhre, care services coordinator at The ALS Association MN/ND/SD Chapter, about some of the ways we can support caregivers.

To find resources for supporting caregivers, go to https://www.als.org/navigating-als/for-caregivers

Read more about the ALS Focus results discussed in this episode at https://www.als.org/research/als-focus/survey-results/survey-3-results

To participate in the ALS Focus survey on mobility, go to https://www.neuroserver.org/als-focus/Home/login

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy is joined by guest co-host Dr. Kuldip Dave, vice president of research at The ALS Association, and interviews Dr. Daniel Elbaum, chief scientific officer at QurAlis, to dig into the Lawrence and Isabel Barnett Drug Development Program.

Learn more about the Lawrence and Isabel Barnett Drug Development Program at https://www.als.org/research/research-we-fund/partnerships-initiatives/lawrence-and-isabel-barnett-drug-development

See how the Barnett family continues to lead in the fight against ALS at https://www.als.org/blog/meet-sophia-harding-carrying-her-great-grandfathers-legacy-fight-against-als

Stay up-to-date with the latest ALS research news by signing up for The ALS Association’s monthly e-newsletter, Research Matters https://www.als.org/research-matters-sign-up

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by guest co-host Dr. Jill Yersak, vice president of mission strategy at The ALS Association, to discuss the benefits of genetic counseling and the potential benefits of genetic testing for people living with ALS. Jeremy also talks to Ellie Harrington, a certified genetics counselor at the Eleanor and Lou Gehrig ALS Center at Columbia University Medical Center, to learn more about some of the common questions that are answered in a genetic counseling session.

Learn more about the genetics of ALS at https://www.als.org/research/research-we-fund/scientific-focus-areas/genetics

For more information on genetic counseling go to https://www.als.org/understanding-als/who-gets-als/genetic-testing/genetic-counseling

Find out what genetic testing can tell you at https://www.als.org/understanding-als/who-gets-als/genetic-testing

For tips on how to discuss genetic counseling and genetic testing with your doctor, go to https://www.als.org/understanding-als/who-gets-als/genetic-testing/how-discuss-genetic-testing-your-doctor

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Dr. Neil Thakur, chief mission officer at The ALS Association, to talk about the efforts to make sure Medicare works for people living with ALS, and talks to Courtney Jones at the Patient Advocate Foundation about navigating the Medicare open enrollment period.

Access the Medicare resource line at https://www.als.org/navigating-als/financial-information/medicare-information/als-medicare-resource-line

To learn more about Medicare go to https://www.als.org/navigating-als/financial-information/medicare-information

For tips on navigating open enrollment go to https://www.als.org/blog/navigating-medicare-open-enrollment

Hear Dr. Thakur’s comments to CMS about optimizing Medicare at https://www.als.org/blog/als-association-cms-administrator-we-urge-you-listen-people-living-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, to commemorate Malnutrition Awareness Week, Jeremy is joined by Stephanie Dobak, a clinical dietician at the Jefferson Weinberg ALS Center, to discuss ways to avoid malnutrition while living with ALS or caring for a person with ALS.

For more information about maintaining good nutrition while living with ALS, check out https://www.als.org/navigating-als/living-with-als/therapies-care/nutrition-feeding-tubes

For some easy chew, easy swallow recipes, go to https://www.als.org/blog/easy-chew-easy-swallow-recipes-help-celebrate-holidays

Learn more about feeding tubes at https://www.als.org/navigating-als/resources/fyi-information-about-feeding-tubes

Results of the ALS Focus survey on caregivers can be found at https://www.als.org/research/als-focus/survey-results/survey-3-results

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jessica and Jeremy are joined by Dr. Suma Babu, assistant professor of neurology at Harvard Medical School and a member of The ALS Association’s Time to Diagnosis Working Group to discuss thinkALS, a new diagnostic guide built to help medical professionals shorten the time it takes to confirm an ALS diagnosis.

To read more about thinkALS, go to https://www.als.org/stories-news/als-association-creates-thinkals-tool-help-doctors-speed-diagnosis-process

Meet the Time to Diagnosis working group at https://www.als.org/thinkals/als-association-time-diagnosis-working-group-members

Learn more about the benefits of a timely diagnosis at https://www.als.org/thinkals/benefits-timely-diagnosis

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy and Jessica celebrate Telehealth Awareness Week with Kyle Zebley, Vice President of Public Policy at the American Telemedicine Association, who reminds us: Telehealth is health.

Learn more about the work being done to protect access to telehealth at https://www.als.org/stories-news/expand-telehealth-access-permanently

Become an advocate and join the fight for access to telehealth at https://als.quorum.us/register/

Find out more about the American Telemedicine Association at https://www.americantelemed.org/

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy and Jessica talk to the team at Amylyx to discuss their recent announcement that the company intends to submit a New Drug Application for AMX0035 and the path ahead to make sure the drug is available as soon as possible.

Learn more about The ALS Association’s support for the development of AMX0035 at https://www.als.org/stories-news/als-association-applauds-amylyxs-amx0035-announcement-urges-swift-fda-approval

Learn how the case of AMX0035 proves advocacy from the ALS community can impact drug development at https://www.als.org/blog/case-amx0035-proves-advocacy-als-community-can-impact-drug-development

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jessica and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, and Michael Trainor, a member of the ALS Focus Patient and Caregiver Advisory Committee. Dr. Parvanta and Michael discuss the recent findings from the second ALS Focus survey, which focused on the needs of caregivers.

To learn more about the ALS Focus program, go to https://www.als.org/research/als-focus

Sign up to participate in ALS Focus at https://www.als.org/research/als-focus/als-focus-registration-instructions

Check out the results of earlier ALS Focus surveys at https://www.als.org/research/als-focus/survey-results

Find resources for caregivers at https://www.als.org/navigating-als/for-caregivers

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jessica and Jeremy are joined by Ally Halverson and Emma Thompson, two recipients of the Jane Calmes ALS Scholarship Fund. Ally and Emma talk about their connection with ALS and how their scholarships are helping them overcome the financial burden of ALS and pursue education and careers focused on caring for others.

To learn more about the Jane Calmes ALS Scholarship fund, go to https://www.als.org/get-involved/jane-calmes-als-scholarship-fund

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jessica and Jeremy are joined by Dr. Jeffrey Rothstein, professor of neurology and neuroscience and the founding director of the Robert Packard Center for ALS Research at Johns Hopkins University School of Medicine, and Dr. Alyssa Coyne, a postdoctoral fellow at Johns Hopkins. Drs. Rothstein and Coyne discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.

To read more about the role CHMP7 accumulation plays in cell degradation go to https://www.nih.gov/news-events/news-releases/researchers-identify-cellular-defect-common-familial-sporadic-forms-als

Learn more Dr. Coyne’s research at https://www.als.org/blog/meet-alyssa-coyne-2018-milton-safenowitz-postdoctoral-fellow

Learn more about The ALS Association’s Milton Safenowitz Postdoctoral Fellowship Program at https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program

Dive deeper into the impact of the Milton Safenowitz Postdoctoral Fellowship Program at https://www.connectingals.org/episodes/recruiting-new-researchers-to-the-search-for-treatments

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jessica and Jeremy are joined by Lori Banker-Horner, director of clinical programs at The ALS Association, to discuss a new partnership with the U.S. Department of Veterans Affairs to expand access to multidisciplinary care, and the work being done to optimize care.

For more information on the partnership between the Association and the VA, go to https://www.als.org/blog/als-association-partners-veterans-administration-improve-lives-veterans-living-als

To learn more about The ALS Association’s clinical network, go to https://www.als.org/local-support/certified-centers-clinics

Find out more about the connection between military service and ALS at https://www.als.org/navigating-als/military-veterans

For the latest from the CDC on COVID, go to https://www.cdc.gov/coronavirus/2019-ncov/index.html

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week's episode is a replay of one of our favorites from 2020; Mike and Jeremy are joined by Donnie Graham and Jan Steinbock, who tell us how they are facing wildfires and a global pandemic with ALS.

For more information about natural disaster preparedness, read https://www.als.org/stories-news/hurricane-season-starts-today-are-you-prepared-for-an-emergency

For help building your own emergency preparedness plan, check out https://www.als.org/navigating-als/resources/fyi-emergency-preparedness-people-als

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica are joined by Dr. Neil Thakur, chief mission officer for The ALS Association, and Abram Bieliauskas, associate director of government affairs for the Association. Dr. Thakur and Abram reflect on a recent congressional subcommittee hearing focused on advancing treatments and cures for neurodegenerative diseases and where the fight goes from here.

To read more about the hearing go to https://www.als.org/blog/als-community-pleas-congress-faster-more-responsive-fda

To watch the hearing in its entirety go to https://www.als.org/blog/als-community-pleas-congress-faster-more-responsive-fda

To view past webinars go to https://www.als.org/research/research-media/research-webinars

Become an advocate at https://als.quorum.us/register/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica are joined by Calaneet Balas, president and CEO of The ALS Association. Calaneet provides an update on the progress made in the fight during the first half of 2021 and discusses what it will take to push the fight forward into the future.

Learn more about the successes from the first half of 2021 at https://www.als.org/2021-mid-year-report

For more on the power of one team on one mission to create one world without ALS, go to https://www.als.org/blog/what-it-takes

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

With summer travel season in full bloom, Jeremy and Jessica revisit a conversation around overcoming the challenges of living with ALS.

For the latest guidance from the CDC on traveling during COVID, go to https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html

For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf

To know more about Jeremy Van Tress, check out https://www.waldenu.edu/programs/resource/walden-military-pride-meet-jeremy-van-tress

Learn more about Accessible Go at https://accessiblego.com/home

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica share the inspiring story of Eddie Ilarazza, an author and social worker who was diagnosed with ALS in 2002 and who talks about fulfilling his dreams, his commitment to serving others and how he is making his community a better place.

Read more about Eddie’s story at https://www.als.org/blog/eddie-ilarraza-doing-whatever-it-takes-make-his-dreams-come-true

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica are joined by Dr. Jill Yersak, vice president of mission strategy for The ALS Association, to discuss efforts to bring new researchers into the field to speed up the search for treatments and a cure.

To learn more about the Milton Safenowitz Postdoctoral Fellowship Program, go to https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica are joined by Dr. Neil Thakur, chief mission officer of The ALS Association, for an update on the continued fight to get the FDA to move more quickly in approving promising drugs for the treatment of ALS. Dr. Thakur discusses the agency’s recent decision to grant accelerated approval for Aduhlem, the first new drug approved for the treatment of Alzheimer’s disease and recent statements made by leaders of the FDA on the drug approval process.

To read ALS Association CEO Calaneet Balas’s recent column on the FDA’s approval process go to https://www.statnews.com/2021/06/22/canada-europe-shouldnt-lead-way-new-als-treatments/

Read Sen. Mike Braun’s (R-Ind.) analysis of the need to make sure FDA has all the tools it needs to be get promising drugs to the market more quickly at https://www.washingtontimes.com/news/2021/jun/29/promising-therapies-for-terminal-patients-advance-/

To learn more about the FDA’s decision to approve Aduhlem, go to https://www.statnews.com/2021/06/29/biogen-fda-alzheimers-drug-approval-aduhelm-project-onyx/

July 4 is the anniversary of Lou Gehrig’s famous speech. Learn more about Lou’s legacy at https://www.als.org/understanding-als/lou-gehrig

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jessica and Jeremy are joined by Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, to discuss Global ALS/MND Awareness Day and the work that is being done all over the world in the fight against ALS.

For information on the Global Day of ALS/MND Awareness go to https://www.alsmndalliance.org/global-day/

To learn more about how we are going Whatever It Takes to create a world without ALS, go to https://www.als.org/whatever-it-takes

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica are joined by Dr. Michael Cartwright, a professor of neurology at Wake Forest School of Medicine and a neurologist at Wake Forest Baptist Health. Dr. Cartwright, co-author of a study on racial differences in ALS interventions, talks about some of the racial disparities research has uncovered in the ALS journey and the need for more research to understand why.

To learn more about the paper Dr. Cartwright co-authored, go to https://n.neurology.org/content/92/17/e1969

For additional research on racial disparities in the diagnosis and treatment of ALS, check out https://journals.lww.com/neurotodayonline/Fulltext/2021/02040/Black_Patients_with_ALS_Face_Significant.3.aspx

For a deeper dive into racial disparities in the health care system, go to https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy and Jessica are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to dig into the path toward making ALS a livable disease with a focus on the search for new treatments and research breakthroughs that can help people live longer, improve quality of life and prevent loved one from getting ALS.

To learn more about doing whatever it takes to make ALS a livable disease, go to https://www.als.org/whatever-it-takes

Find more information about the research currently being funded by The ALS Association at https://www.als.org/research/research-we-fund

Read up on The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

For more information on the ALS Focus survey program, check out https://www.als.org/research/als-focus

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy is joined by co-host Jessica Chapman to get an update on all the work being done to speed up the process of getting promising new treatments to people with ALS. They turn to Abram Bieliauskas, associate director of government affairs for The ALS Association, and Dave Zook, a consultant for the Association. Dave and Abram reflect on the recent We Can’t Wait Action Meeting with the FDA and lay out two promising bills recently reintroduced in Congress – the Promising Pathways Act and ACT for ALS.

It’s not too late to register for the 2021 virtual advocacy conference: http://www.alsadvocacyconf.org/

To learn more about the fight to expand access to promising treatments go to https://www.als.org/advocacy/we-cant-wait

Sign up to become an ALS advocate at https://als.quorum.us/register/

Find out more information about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week Jeremy is joined by co-host Jessica Chapman to talk with Larry Falivena, a member of The ALS Association Board of Trustees and a speaker at the We Can’t Wait Action Meeting with the FDA. Larry reflects on the meeting and where the fight for access to promising treatments goes from here.

To watch the We Can’t Wait Action Meeting in full, go to https://www.als.org/advocacy/we-cant-wait

To learn more about the next steps in the fight go to https://www.als.org/blog/we-cant-wait-action-meeting-fda-what-we-heard-and-whats-follow

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Jeremy talks to Brian Chappell, a wealth advisor and portfolio manager at UBS, to explore the devastating financial impact of an ALS diagnosis and some tips on navigating the expense.

To learn more about the financial impact of ALS, go to https://www.als.org/navigating-als/financial-information

Share one family’s journey through the financial impact of ALS at https://www.als.org/blog/als-and-financial-burdens-it-presents-families-living-disease

To access the resource guides referenced in this discussion, check out https://www.als.org/navigating-als/resources/living-als-resource-guides

For more information on caregiver burnout, go to https://www.als.org/navigating-als/resources/fyi-coping-burnout

Read about the Jane Calmes ALS Scholarship Fund at https://www.als.org/blog/now-accepting-applications-jane-calmes-als-scholarship-fund-launches-year-three

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Sue Seabrook; a wife, a mom, a sister, and a caregiver for her mother living with ALS. Sue talks about the ways her family is embracing all the moments that matter in life.

Read more about the moments that matter to Sue at https://www.als.org/blog/my-mother-heartbeat-our-family

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Rebecca Wetzel, an educator and philanthropist, who partnered with The ALS Association to launch the ALS Youth Challenge in 2019. Rebecca shares the inspiration behind the Youth Challenge, a unique virtual opportunity for kids to get involved in 2021, and how the Youth Challenge is empowering kids to raise awareness of ALS.

Youth Action Day is scheduled for May 15, 2021. Find ways to get kids in your neighborhood involved at https://www.als.org/get-involved/als-youth-challenge

To learn more about the ALS Youth Challenge, go to https://www.als.org/blog/challenging-youth-join-fight

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Dr. Chris Nowinski, co-founder and CEO of the Concussion Legacy Foundation, to check in on the state of research into the connection between frequent traumatic brain injuries and neurological diseases.

For more information about the need for more research into the connection between ALS and frequent brain injuries, go to https://www.als.org/blog/can-football-cause-als-look-research

Learn more about the Concussion Legacy Foundation at https://concussionfoundation.org/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Amy Roman, a speech and language pathologist at the Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center in San Francisco, to discuss recent changes to Medicare that will expand access to telehealth to include speech-language pathology.

To learn more about the coding changes at CMS, go to https://www.als.org/blog/cms-expands-telehealth-coverage-speech-language-pathology-services-another-win-als-community

Learn more about The ALS Association’s public policy priorities at https://www.als.org/advocacy/our-priorities

For more information about efforts to permanently expand access to telehealth, read https://www.als.org/sites/default/files/2021-03/ALS%20Association%20Statement%20-%20The%20Future%20of%20Telehealth_FINAL.pdf

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy get out of the way as Sandra Sullivan, The ALS Association’s director of chapter communications, talks to Sarah Trott, a former contestant on The Bachelor, about her connection to ALS and her work trying to support and connect young caregivers like herself around the country.

To learn more about Sarah Trott’s ALS journey, go to https://www.sandiegouniontribune.com/caregiver/news-for-caregivers/story/2021-03-16/from-caregiver-to-spokeswoman-former-bachelor-contestant-speaks-out-for-als

If you are a caregiver and want to join Sarah’s caregiver community on Facebook, go to https://www.facebook.com/groups/144164414015354?modal=false&should_open_composer=false

Find caregiver support resources at https://www.als.org/navigating-als/for-caregivers

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week Mike and Jeremy are joined by David Van de Riet, a member of The ALS Association national board of trustees, and Kendra Albers, director of development at The ALS Association Greater Chicago Chapter. The 2021 spring Walk to Defeat ALS season is upon us, and we dig into the creative, innovative ways walk teams are embracing the opportunity to Walk Your Way.

To find a Walk to Defeat ALS in your community, go to https://secure2.convio.net/alsa/site/SPageServer/;jsessionid=00000000.app20094b?NONCE_TOKEN=EE901DDCE5B0CC95F80447FAF582602E&pagename=WLK_landing

To learn more about how the Walk to Defeat ALS will encourage participants to Walk Your Way, go to https://www.als.org/blog/walk-defeat-als-continues-march-safely-spring

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Chuck Haberstroh and Adam Wilson, co-chairs of the committee who led the fight to create Lou Gehrig Day, an annual day for Major League Baseball teams to raise awareness of ALS and deepen the long-standing relationship between MLB and the ALS community.

Read more about the fight to create Lou Gehrig Day at https://www.als.org/blog/its-official-all-30-major-league-baseball-teams-endorse-league-wide-lou-gehrig-day

To learn more about Lou Gehrig and the history of ALS, go to https://www.als.org/understanding-als/lou-gehrig

Check out a biographer’s reflections on Lou Gehrig’s legacy at https://www.als.org/blog/biographer-reflects-lou-gehrigs-legacy

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy welcome back Ashley Smith, The ALS Association's Associate Director of Grassroots Advocacy, for an overview of 2021 legislative and appropriation priorities.

To learn more about how you can get involved as an ALS advocate, visit als.org/advocacy

Click here for additional information on The ALS Association's 2021 Public Policy Priorities

For more on the life and research of Dr. Michael Bereman, click here.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy recognize Patient Safety Awareness Week and turn to Leslie Ryan, director of education & professional development programs at The ALS Association for some tips on preventing medical harms in hospital settings. Mike then welcomes Lauren Brown, the nurse coordinator at the Providence ALS Center in celebration of Certified Nurse’s Day.

To access medical information materials that will help health care provider tailor their care to your needs, go to https://www.als.org/navigating-als/resources/medical-information-materials

To hear more from Lauren Brown on the role nurse coordinators play on the multidisciplinary care team, go to https://www.youtube.com/watch?v=sKJDT5qHWJA

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Megan Frisk, a dietician and the care services coordinator at The ALS Association Rocky Mountain Chapter. March is National Nutrition Month, and Megan serves up some helpful tips on maintaining good nutrition while living with ALS.

For more information on nutritional support for people with ALS, check out https://www.als.org/navigating-als/resources/maintaining-good-nutrition-als

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to discuss some recent news in ALS research and signs of hope on the horizon.

To learn more about research into NU-9, go to https://eurekalert.org/pub_releases/2021-02/nu-and021921.php

For more information on The ALS Association’s support for Dr. Ozdinler’s research into upper motor neurons, check out https://www.als.org/research/research-we-fund/funded-grants

Read about The ALS Association’s support for Dr. Stanley Appel’s research into regulatory T-lymphocytes at https://www.als.org/blog/als-association-als-finding-cure-and-mda-co-fund-clinical-trial-grant-study-restoring-immune

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Debbie Drell, director of membership at the National Organization for Rare Disorders, to discuss Rare Disease Day, the origin of NORD’s “Show Your Stripes” campaign and how NORD’s patient advocacy work has continued during the pandemic.

For more information on Show Your Stripes go to https://rarediseases.org/rare-disease-day/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy explore the challenges of traveling while living with ALS and some ways to plan ahead to make your next trip a success.

Stay up to date on the latest CDC guidance on travel during the COVID-19 pandemic at https://www.cdc.gov/coronavirus/2019-ncov/travelers/travel-during-covid19.html

For tips on traveling while living with ALS go to https://teamgleason.org/wp-content/uploads/2019/06/Flying-with-ALS_-Power-Wheelchair-and-Ventilator.pdf

To know more about Jeremy Van Tress, check out https://www.waldenu.edu/programs/resource/walden-military-pride-meet-jeremy-van-tress

Learn more about Accessible Go at https://accessiblego.com/home

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy commemorate International Day of Women and Girls in Science with Drs. Ericka Greene and Sandrine Da Cruz, who give us updates on their ALS research and talk about what is being done to break down barriers to recruit more women into scientific research.

To learn more about International Day of Women and Girls in Science, go to https://www.un.org/en/observances/women-and-girls-in-science-day

For more information about Dr. Ericka Green’s research at Houston Methodist go to https://www.houstonmethodist.org/faculty/ericka-p-greene/

Read about Dr. Sandrine Da Cruz’s research at VIB-KU Leuven Center Brain and Disease Research at https://cbd.vib.be/labs/da-cruz-lab

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Dr. Sarah Parvanta, director of ALS Focus, to learn how the voices of ALS caregivers are being elevated to make sure services and programs are tailored to their needs.

To learn more about the ALS Focus, go to https://www.als.org/research/als-focus

To register for ALS Focus or to log in to participate in the current survey, go to https://www.neuroserver.org/als-focus/Home/login

Check out the results of previous ALS Focus surveys at https://www.als.org/research/als-focus/survey-results

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Katie Berge, director of federal affairs at The Leukemia & Lymphoma Society and a member of the Partnership to Protect Coverage, a group of 33 patient advocacy organizations including The ALS Association. Katie walks us through the first 100 days of the Biden administration and lays out the health care fights ahead.

For more information about the partnership and its 100 days agenda, go to https://www.lls.org/news/33-organizations-representing-millions-of-patients-urge-policymakers-to-adopt-patient-first-policy-agenda?news=News%20Releases&newsid=12355

Learn more about The ALS Association’s call for a boost in federal funding of ALS research here https://www.als.org/blog/boost-funding-needed-als-research-year

Stay up to date with The ALS Association’s advocacy priorities at https://www.als.org/advocacy/our-priorities

Sign up to become an advocate at https://als.quorum.us/register/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

In this bonus episode, Mike has a conversation with legendary Major League Baseball umpire, Phil Cuzzi, about his personal connection to ALS and what he's doing to make a difference.

Click here to learn more about Phil's upcoming fundraiser benefiting the ALS community.

This episode was produced by Mike Stephenson and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Dr. Richard Bedlack, director of the Duke ALS Clinic, for an update on the COVID-19 pandemic and the latest on access to vaccines.

To stay up to date on COVID-19 vaccine access, go to https://www.als.org/navigating-als/living-with-als/covid-vaccines

For more information on ROAR, go to: https://medschool.duke.edu/about-us/news-and-communications/som-magnify/bold-approach-caring-als-patients

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Senator Sheldon Whitehouse of Rhode Island to look back on the passage of the ALS Disability Insurance Access Act, which ended the five-month waiting period for people with ALS to access Social Security Disability Insurance.

To learn more about the role ALS advocates played in getting the ALS Disability Insurance Access Act passed, go to https://www.als.org/blog/als-disability-insurance-access-act

To become an ALS advocate, go to https://als.quorum.us/register/

To revisit our earlier conversation with Alaska Senator Lisa Murkowski, go to https://www.connectingals.org/episodes/digging-into-the-act-for-als

Keep up with The ALS Association’s legislative priorities at https://www.als.org/advocacy/our-priorities

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week's episode is a replay of one of our favorites from 2020; Mike and Jeremy talk to three families who share their experiences living with ALS during the COVID-19 pandemic and how they are managing social isolation and anxiety around the coronavirus.

For tips on managing stress during the COVID-19 outbreak read https://alsadotorg.wordpress.com/2020/05/26/continuing-to-cope-with-anxiety-and-stress-during-these-difficult-times/

For more information about coping with the “new normal” after an ALS diagnosis, check out The ALS Association’s resource guides http://www.alsa.org/als-care/resources/publications-videos/resource-guides/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, we are joined by Lori Banker-Horner, The ALS Association’s director of clinical programs and Leslie Ryan, the Association’s director of education and professional development programs, to reflect on the delivery of clinical care in 2020 and to look ahead to the coming year.

For more information on COVID-19 vaccines for people with ALS go to https://www.als.org/navigating-als/living-with-als/covid-vaccines

Learn more about The ALS Association’s certified centers and clinics at https://www.als.org/local-support/certified-centers-clinics

Check out resources available to people living with ALS at https://www.als.org/navigating-als

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Abram Bieliauskas, associate director of government affairs at The ALS Association, to reflect on some big wins for ALS advocates in 2020 and to look ahead at the fights to come in 2021.

Check out The ALS Association COVID-19 vaccine information hub at https://www.als.org/navigating-als/living-with-als/covid-vaccines

Sign up to become an advocate at https://als.quorum.us/register/

Keep track of the latest ALS Association advocacy priorities at https://www.als.org/advocacy/our-priorities

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Dr. Clifton Gooch, chair of the University of South Florida’s Department of Neurology and a member of The ALS Association’s national board of trustees. Dr. Gooch takes us through the latest news on the COVID-19 vaccines, explains their safety and efficacy, and talks about what they mean for people with ALS.

Learn more about Dr. Gooch at https://www.als.org/about-us/leadership/clifton-cliff-gooch-md

Read Dr. Gooch’s piece on the long-term impact of COVID-19 at https://www.tampabay.com/opinion/2020/11/18/the-covid-long-haulers-when-the-body-gets-better-but-the-brain-does-not-column/

Find out what the CDC says about the COVID-19 vaccine at https://www.cdc.gov/coronavirus/2019-ncov/vaccines/vaccine-benefits.html

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week Mike and Jeremy are joined by Dr. Jill Yersak, vice president of mission strategy at The ALS Association, who walks us through some of the highlights in ALS research from 2020, how ALS researchers persevered through the pandemic, and what has her excited heading into 2021.

For more information about research funded by The ALS Association, go to https://www.als.org/research

To reach out to your member of Congress about the ALS Disability Insurance Access Act check out https://als.quorum.us/campaign/ssdivote/

Learn more about the push to get AMX0035 to people with ALS as quickly as possible at https://www.als.org/stories-news/amx0035-petition-delivered-fda

Thanks to Jeremy’s dog, Sophie, for reminding us about the challenges and joys of home recording!

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Sen. Lisa Murkowski (R-Alaska), to discuss the ACT for ALS bill, the Senate’s push to double funding for the ALS Research Program at the Department of Defense to $40 million, and why she became a leader in the fight against ALS.

To learn more about ACT for ALS, go to https://www.als.org/stories-news/strengthened-act-als-act

For more information on the need for more funding at ALSRP, check out https://www.als.org/advocacy/our-priorities

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy honor Veteran’s Day by talking to John Hartwell, who reflects on his military service and living with ALS during a pandemic.

To learn more about the connection between military service and ALS, go to https://www.als.org/navigating-als/military-veterans

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy kick off Family Caregivers Month with Grace Whiting, president and CEO of the National Alliance for Caregiving. Grace shares insight from the Alliance’s Caregiving in the U.S. 2020 report and reflects upon caregiving during the COVID-19 pandemic.

To learn more about ALS caregivers, read https://www.als.org/stories-news/join-us-celebration-als-caregivers-everywhere

For more information about the state of caregiving in America, read the National Alliance for Caregiving’s 2020 report here https://www.caregiving.org/caregiving-in-the-us-2020/

To find resources for caregivers, go to https://www.als.org/navigating-als/for-caregivers

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week Mike and Jeremy commemorate Respiratory Care Week by welcoming back Dr. Lou Libby, a practicing physician with Oregon Clinic and the lead Pulmonologist at The Providence ALS Center. Dr. Libby, a member of The ALS Association’s national board of trustees, catches us up on the latest in respiratory health and the impact of the ongoing COVID-19 pandemic.

To learn more about Dr. Libby’s work in the fight against ALS, go to https://www.als.org/about-us/leadership/lou-libby-md

For more information about respiratory care for people with ALS, read https://www.als.org/navigating-als/resources/fyi-breathing-difficulties

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

In the closing days of the 2020 election, Mike and Jeremy are joined by Lee Page, senior associate director of advocacy at Paralyzed Veterans of America, who provides guidance on casting in-person votes while dealing with mobility challenges and a global pandemic.

For more information about Paralyzed Veterans of America, go to https://pva.org/

Check out the CDC’s tips on voting during the COVID-19 pandemic here https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/going-out/voting-tips.html

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Dr. Sabrina Paganoni, co-director of MGH Neurological Clinical Research Institute and principal investigator of the CENTAUR trial evaluating the effects of Amylyx Pharmaceutical’s AMX0035 on people living with ALS. Dr. Paganoni explains the results of that study, which were published in the October edition of Muscle and Nerve, and why the survivability data creates a new sense of hope in the search for treatments and a cure.

To read more about the results of the off-label extension study, go to https://www.als.org/stories-news/amx0035-survivability-data

To learn more about Dr. Paganoni’s research, check out https://www.massgeneral.org/doctors/19426/sabrina-paganoni

For a deeper dive into the survivability data, watch this webinar https://www.neals.org/for-people-with-als-caregivers/educational-webinars/long-term-survival-of-participants-in-the-centaur-trial

To keep the momentum going, sign and share the petition at als.org/petition

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this week's episode we welcome in the hosts of the podcast Born 2 Battle, Chris Beckette and Nathaniel Palone, to discuss the origin of their show and their plans to continue raising awareness for ALS.

You can find Born 2 Battle wherever you listen to podcasts or directly on Chris' website,

https://www.beckettesbattle.com/

To learn more about Chris' ALS story:
https://www.youtube.com/watch?v=1JT-Y3wgPuI&feature=emb_title

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

For this week's episode, Jeremy and Mike welcome voting rights expert, Dara Baldwin, Director of National Policy for the Center for Disability Rights, to discuss how to vote during a pandemic and what to consider if you're facing mobility and motor function challenges.

To get help registering to vote or to find more information about voting in your state, you can call the Election Protection Hotline at 866.687.8683. Or visit their website at at: https://866ourvote.org/

You can also find additional, state-specific voting information at your state's Secretary of State website.

To learn more about the Center for Disability rights, visit:http://cdrnys.org/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

To kick off National Physical Therapy Month, Mike and Jeremy are joined by Dr. Shannon Terrell, a physical therapist at Kaiser Permanente Skyline Medical Offices in Colorado. Dr. Terrell lays out the role a physical therapist plays in an ALS clinical environment and discusses how the practice is embracing expanded access to telemedicine.

For more information about improving go to https://www.als.org/navigating-als/living-with-als/therapies-care/how-to-improve-mobility

For a deeper dive on navigating mobility while living with ALS, read https://www.als.org/navigating-als/resources/fyi-mobility-and-als

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy chat with ALS advocate Sunny Brous, who shares how she finds hope and maintains connections during what has been a rollercoaster of a year.

To learn more about Sunny's journey, visit her website at https://sunnystrong.com/

And follow her on Instagram @sunnystrongals

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy are joined by Donnie Graham and Jan Steinbock, who tell us how they are facing wildfires and a global pandemic with ALS.

For more information about natural disaster preparedness, read https://www.als.org/stories-news/hurricane-season-starts-today-are-you-prepared-for-an-emergency

For help building your own emergency preparedness plan, check out https://www.als.org/navigating-als/resources/fyi-emergency-preparedness-people-als

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy continue the discussion around Amylyx Pharmaceutical’s phase 2 clinical trial results of AMX0035, which was shown to slow down progression of ALS in trial participants. They are joined by Dr. Kuldip Dave, vice president of research at The ALS Association, to gain insight into how AMX0035 fits into the broader context of the ALS research landscape. They then are joined by two leaders from the ALS community, Sandy Morris and Tommy May, who share their thoughts on why this gives the community hope, and how the petition to expedite access to AMX0035 illustrates the level of urgency in the fight.

For more information on how AMX0035 works and why it’s inspiring so much home, read https://www.als.org/stories-news/als-association-i-am-als-call-amylyx-fda-make-promising-new-drug-available-our-als

To sign and the petition calling on Amylyx Pharmaceuticals and FDA to expedite access to AMX0035 go to https://als.quorum.us/campaign/28538/

To read about Tommy May’s work to protect access to noninvasive ventilators, check out https://www.als.org/stories-news/als-association-board-member-urges-congress-protect-right-breathe

To read more about Sandy’s story, read https://iamals.org/stories/sandy-morris/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy dig into the latest development out of Amylyx Pharmaceuticals, which recently announced findings of a phase 2 clinical trial of AMX0035, a drug compound shown to be safe and clinically effective at slowing down disease progression. They are joined by Dr. Neil Thakur, Chief of Mission at The ALS Association, and Dr. Jinsy Andrews, the Director of Neuromuscular Clinical Trials at Columbia University's Irving Medical Center and a member of The ALS Association’s Board of Trustees to discuss the safety and effectiveness of AMX0035 and how to work with Amylyx and the FDA to make this drug available to people living with ALS as soon as possible.

Join The ALS Association and Northeast ALS Consortium (NEALS) on Friday at 3p ET for an informative webinar. Register here: https://bit.ly/3gVlpG5

Read more about the AMX0035 trial here: https://www.nejm.org/doi/full/10.1056/NEJMoa1916945?

Sign the petition calling on Amylyx and the FDA to expedite access to AMX0035 here: https://als.quorum.us/campaign/28538/

Learn more about The ALS Association’s work to make sure people with ALS have access to AMX0035 as quickly as possible here: https://www.als.org/stories-news/als-association-i-am-als-call-amylyx-fda-make-promising-new-drug-available-our-als

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy discuss what back-to-school means in 2020 for families impacted by ALS. They chatted with the Rudin brothers, Eli and Liam, both recipients of The Jane Calmes ALS Scholarship, about what college looks like during a pandemic and resources that are available to students in their situation.

Learn more about The Jane Calmes Scholarship fund: https://www.als.org/get-involved/jane-calmes-als-scholarship-fund

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy turn their focus to ALS Focus, a survey platform that brings the needs and perspectives of people living with ALS to the center of our fight. They are joined by Dr. Sarah Parvanta, director of ALS Focus, and John Robinson and Lora Pollari-Welbes, two members of the ALS Focus advisory committee, to walk us through what we learned from the first survey and how listeners can get involved.

To learn more about ALS Focus, go to https://www.neuroserver.org/als-focus/Home/wiaf

To participate in future ALS Focus surveys, check out https://www.neuroserver.org/als-focus/Home/login

Read more about the results of the first ALS Focus survey here https://www.als.org/stories-news/als-focus-survey-1-key-findings-show-high-financial-burden-als-community

Check out bios for the ALS Focus Patient and Caregiver Advisory Committee here https://www.als.org/als-focus/als-focus-structure

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy hear from Dr. Elijah Stommel, a neurologist at Dartmouth-Hitchcock Health and a professor of neurology at the Geisel School of Medicine at Dartmouth. Dr. Stommel walks us through the connection between exposure to blue-green algae toxins and development of ALS, and provides insight on continuing to do ALS research during the COVID-19 pandemic.

For more information on Dr. Stommel, check out https://www.dartmouth-hitchcock.org/findaprovider/provider/192/Elijah-W-Stommel

Learn more about Dr. Stommel’s work on blue-green algae here: https://www.als.org/research/research-we-fund/funded-grants

Check out this Q&A with Dr. Stommel about environmental risk factors: https://geiselmed.dartmouth.edu/news/2016/link-between-environmental-toxin-and-als-grows-stronger/

For more information on enrollment in the Healey ALS Platform Trial, read https://www.als.org/stories-news/healey-als-platform-trial-enrolls-first-participants

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this week’s episode, Mike and Jeremy talk to Dr. Lauren Laboissonniere, a neuroscientist at the Ranum Lab at the University of Florida and a recipient of The ALS Association’s Milton Safenowitz Postdoctoral Fellowship. Dr. Laboissonniere discusses her research developing novel therapies targeting C9orf72 ALS, how her research continues despite the COVID-19 pandemic, and what inspired her at a young age to study ALS.

To learn more about Dr. Laboissonniere’s research, check out https://www.als.org/stories-news/researcher-spotlight-lauren-laboissonniere

For more information about the Milton Safenowitz Postdoctoral Fellowship Program, go to https://www.als.org/research/research-we-fund/fellowships/milton-safenowitz-postdoc-fellowship-program

Read more about the Ranum Lab at the University of Florida here: https://neurogenetics.med.ufl.edu/faculty/dr-laura-p-w-ranum/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this week’s episode, Mike and Jeremy get ready for National Wellness Month by checking in with Dr. Ellen Langer, a social psychologist at Harvard known as the mother of mindfulness. Dr. Langer discusses the power of living in the present and how to practice mindfulness while dealing with ALS.

Learn more about Dr. Langer here: https://www.ellenlanger.com/about/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this week’s episode, Mike and Jeremy talk to Lorri Carey, a veteran leader in the fight against ALS and host of the podcast “I’m Dying to Tell You.” Lorri talks about her 16-year journey with ALS, all the many ways she serves the community, the sense of urgency she sees in the ALS community today, and where she finds time to put her extraordinary podcast together.

To listen to “I’m Dying to Tell You,” go to https://imdyingtotellyoupodcast.com/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy bring in an expert to help cover a topic that isn’t always easy to discuss in a clinical setting; intimacy and ALS. Dr. Alair Altiero is a mental health professional who works in the ALS clinic at the Hershey Medical Center in Pennsylvania. Her experience in addressing issues related to both physical and emotional intimacy with couples facing ALS carries a robust discussion around a sensitive subject.

Quick note, this episode does feature some adult content as we are covering the topic of intimacy.

To learn more about Dr. Altiero and her work, visit:http://webpa.alsa.org/site/PageNavigator/PA_Chapter/Hershey_Clinic/PA_8_profile_3.html

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Dr. Richard Bedlack, director of the Duke ALS Clinic and head of ALSUntangled, about a recent paper he co-authored laying out common red-flags patients need to know about when considering off-label treatments. Dr. Bedlack also weighs in on the ways technology adoption during the Covid-19 pandemic could change the future of medicine.

To learn more about the off-label red flags, go to https://www.als.org/stories-news/how-avoid-misleading-claims-about-label-prescription-drug-use

For a deeper dive on the red flags identified by ALSUntangled, check out https://www.tandfonline.com/doi/pdf/10.1080/21678421.2020.1765518?needAccess=true&

To revisit Dr. Bedlack’s earlier appearance on Connecting ALS click https://www.connectingals.org/episodes/alsuntangled-and-a-listening-tour

Learn more about the important work being done by ALSUntangled at http://www.alsuntangled.com/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy commemorate Global ALS/MND Awareness Day with members of the International Alliance of ALS/MND Associations and get an update on the fight against ALS motor neurone diseases around the world. They are joined by a powerhouse lineup of guest who are leading our fight: Catherine Cummings, executive director of the International Alliance, Gethin Thomas, executive director of research for MND Australia, and Nick Goldup, director of care improvement at the MND Association of England, Wales and Northern Ireland and a board member of the International Alliance. Also joining the discussion and setting the stage is Calaneet Balas, president and CEO of The ALS Association and board chair of the International Alliance.

Learn more about the International Alliance of ALS/MND Associations, go to https://www.alsmndalliance.org/

To learn more about MND Australia, check out https://www.mndaust.asn.au/Home

To read about the MND Association of England, Wales and Northern Ireland go to https://www.mndassociation.org/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this week’s episode, Mike and Jeremy talk to Larry Falivena, a member of The ALS Association’s national board of trustees. Larry’s shares his memories from his 2019 tour of Major League Baseball stadiums to raise awareness of ALS, his thoughts on Lou Gehrig’s birthday and why the Iron Horse continues to inspire people today, and how Father’s Day has changed since Larry’s 2017 diagnosis with ALS.

To read more about the legacy of Lou Gehrig’s farewell speech, check out https://www.als.org/stories-news/legacy-lou-gehrigs-farewell-speech

You can read the transcript of Lou Gehrig’s farewell speech here https://www.lougehrig.com/farewell/

For more information about Larry’s MLB tour, go to https://www.facebook.com/larrychallengealsmlbtour/?ref=aymt_homepage_panel&eid=ARBessBHYDlR89L5u_XCdz_vVi_6WGzrpMS_Lq54d9loUydfQJmpj5Kuyugg_wf8N4Fcb920bKPTkqQR

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Dr. Ralph Kern, president and chief medical officer at BrainStorm Cell Therapeutics, and Dr. Kuldip Dave, vice president of research at The ALS Association. Drs. Kern and Dave discuss The ALS Association’s partnership with I AM ALS to provide a $500,000 grant to BrainStorm to study biomarkers during BrainStorm’s ongoing phase 3 clinical trial of NurOwn.

To learn more about the partnership to fund biomarker research read http://www.alsa.org/news/media/press-releases/The-ALS-Association-I-AM-ALS-Award-BrainStorm-Cell-Therapeutics-for-ALS-Biomarker-Study.html

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On today’s episode, Mike and Jeremy talk to three families living with ALS, who share their experiences living with ALS during the COVID-19 pandemic and how they are managing social isolation and anxiety around the coronavirus.

For tips on managing stress during the COVID-19 outbreak read https://alsadotorg.wordpress.com/2020/05/26/continuing-to-cope-with-anxiety-and-stress-during-these-difficult-times/

For more information about coping with the “new normal” after an ALS diagnosis, check out The ALS Association’s resource guides http://www.alsa.org/als-care/resources/publications-videos/resource-guides/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this week’s episode, Mike and Jeremy talk to Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital and director of the Sean M. Healey & AMG Center for ALS, about the impact of COVID-19 on conducting clinical trials. Dr. Cudkowicz also provides an update on the Healey Platform Trial and potential long-term changes to trial design.

To learn more about Dr. Cudkowicz, go to https://www.massgeneral.org/doctors/16904/merit-cudkowicz

Read all about the Healey Platform Trial at https://alsadotorg.wordpress.com/2020/01/17/in-case-you-missed-it-the-als-association-invests-3-million-in-first-ever-als-platform-trial-to-speed-up-clinical-trial-process/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Dr. Melinda Kavanaugh, a clinical social worker and associate professor at the University of Wisconsin-Milwaukee, about the impact ALS has on kids, teenagers, and young adults. Dr. Kavanaugh discusses her research talking to kids about the roles they play as caregivers and ways to empower children in families affected by ALS.

To learn more about Dr. Kavanaugh, check out her university bio https://uwm.edu/socialwelfare/people/kavanaugh-phd-lcsw-melinda-s/

To access the books Dr. Kavanaugh wrote for kids, teenagers, and young adults impacted by ALS, go to http://www.alsa.org/als-care/resources/publications-videos/youth-education/

To take the ALS Youth Challenge, go to http://www.alsa.org/fight-als/youth-challenge/

To learn about Sydney Carroll’s Youth Challenge fundraiser, go to https://alsadotorg.wordpress.com/2020/05/12/challenging-our-youth-to-join-the-fight-against-als/#more-6730

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Betsy McCormick and Maya Bulmer about how their family is adjusting to life since Betsy was diagnosed with ALS in 2019, their Mother’s Day plans, and how they developed a new mother-daughter tradition.

For more on Maya and Betsy’s story, check out https://alsadotorg.wordpress.com/2019/11/08/maya-bulmer-today-is-what-we-have/

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy talk to Mark Calmes, vice chair of The ALS Association Board of Trustees, about the Jane Calmes ALS Scholarship Fund, which is currently accepting applications from people affected by ALS who wish to pursue college degrees or vocational certificates. Last year, the scholarship fund awarded $225,000 to 45 students across the country. One of those students is Ryan Pogemiller, a student at Arizona State University. Ryan and his mom, Allison, join to discuss how ALS impacted their life and how the Jane Calmes ALS Scholarship Fund is helping Ryan honor his father’s legacy.

To learn more about the Jane Calmes ALS Scholarship Fund, read http://www.alsa.org/fight-als/calmes-als-scholarship-fund/

Click here to donate to the Jane Calmes ALS Scholarship Fund https://secure2.convio.net/alsa/site/Donation2;jsessionid=00000000.app20096a?df_id=39255&mfc_pref=T&39255.donation=form1&_ga=2.226991709.1756288973.1588190032-349483217.1580497749&NONCE_TOKEN=1B41CDAF669428FD6B5B9631D50C7A84

Read about the inaugural class of the Jane Calmes ALS Scholarship Fund here https://alsadotorg.wordpress.com/2019/09/19/inaugural-class-of-the-jane-calmes-als-scholarship-fund-hails-from-25-states/

As mentioned at the beginning, listen to ALS Association President and CEO Calaneet Balas talk about managing during a crisis on the Business of Giving https://denver-frederick.com/2020/04/23/als-association-ceo-on-managing-through-a-crisis/

As a reminder, May 10 is Mother's Day and we've been thinking it would be great to share some amazing stories of moms in a special episode. Simply record it using a voice memo app on your phone and e-mail it to connectingals@alsmn.org. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May 7th.

For quick instructions to record a voice memo visit: http://webmn.alsa.org/site/DocServer/How_to_record_a_voice_memo__Connecting_ALS_.pdf/428545705?docID=136253&verID=1

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

May 10 is Mother's Day, so after you call the florist and get flowers ordered, grab your phone and share a reflection about moms and ALS. Simply record it using a voice memo app on your phone and e-mail it to connectingals@alsmn.org. We'll collect these stories together and share some of them on our Mother's Day episode, which will come out on May 7th.

For quick instructions to record a voice memo visit: http://webmn.alsa.org/site/DocServer/How_to_record_a_voice_memo__Connecting_ALS_.pdf/428545705?docID=136253&verID=1

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This week, Mike and Jeremy celebrate National Volunteer Week by exploring some of the creative ways volunteers are continuing to serve the community despite the challenges of social distancing and some of the long-term trends in volunteering. They are joined by Sarah Lettow, engagement coordinator for The ALS Association Iowa Chapter, and Dr. Nathan Dietz, a research scholar at the Do Good Institute in the University of Maryland’s School of Public Policy.

Learn more about the Do Good Institute here: https://dogood.umd.edu/

For more of a specific look at their research publications visit: https://dogood.umd.edu/research-impact/publications

For information on how to volunteer in your community, contact your local ALS Association chapter here: http://www.alsa.org/community/

To read the Do Good Institute’s analysis of trends in philanthropy and volunteerism, click here: https://dogood.umd.edu/research-impact/publications/where-are-americas-volunteers

To learn more about some of the challenges COVID is creating for volunteerism, read this piece in the Chronicle of Philanthropy (paywall): https://www.philanthropy.com/article/Big-Changes-Lie-Ahead-for/248335

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this episode, Mike and Jeremy talk to Dr. Barron Lerner, a medical doctor and director of the undergraduate bioethics curriculum at New York University’s Langone Health, and Dr. Neil Thakur, chief mission officer at The ALS Association. The conversation covers health care scarcity and rationing during the COVID-19 pandemic, historical examples of bioethics and what they can teach us about the current health care crisis, and what people living with ALS can do to prepare for their immediate and future health care needs.

For more information about Dr. Barron Lerner, read https://med.nyu.edu/faculty/barron-h-lerner

To read Dr. Lerner’s historical study of ethical challenges faced by health care practitioners read https://www.ncbi.nlm.nih.gov/pubmed/27802464?otool=nynyumlib&myncbishare=nynyumlib

Department of Health and Human Services guidance on nondiscrimination in the health care system can be found here: https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html

Find resources available to empower you to make informed decisions about your health care here https://alsadotorg.wordpress.com/2020/04/08/tips-to-help-the-als-community-plan-ahead-during-the-covid-19-pandemic/

The CDC recommends creating a plan for your household and community during the COVID-19 pandemic. Learn more here: https://alsadotorg.wordpress.com/2020/04/08/tips-to-help-the-als-community-plan-ahead-during-the-covid-19-pandemic/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

Welcome to Connecting ALS. In this episode we talk to Dr. Manish Raisinghani, president and CEO of Target ALS, about conducting research during the COVID-19 pandemic, the recent kick off of a collaboration with The ALS Association to look for biomarkers, and the important role of collaboration in ALS research.

For more information on Target ALS visit: http://www.targetals.org/

To learn more about The ALS Association partnering with Target ALS to discover #ALS biomarkers check out the blog here: https://alsadotorg.wordpress.com/2020/03/19/target-als-and-als-association-announce-new-tdp-43-focused-biomarker-initiative/

For more information about collaboration in ALS research and the search for biomarkers visit: http://www.alsa.org/research/our-approach/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

On this episode of Connecting ALS, Mike and Jeremy talk to Lauren Tabor Gray, Ph.D., CCC-SLP, a clinical researcher and speech pathologist and co-director of the Phil Smith Neuroscience Institute in Ft. Lauderdale, Florida. Dr. Gray discusses the increasing use of telehealth to treat patients in a time of extreme social distancing brought on by the COVID-19 pandemic. She also gives insight on providing clinical care for people dealing with the onset of speaking and swallowing challenges as their disease progresses, and an update on clinical research.

To learn more about recent changes to Medicare rules expanding access to telehealth, check out https://alsadotorg.wordpress.com/2020/03/20/medicare-coverage-for-telehealth-visits-expanded-during-covid-19-pandemic/

You can also learn more about access to telemedicine at http://www.alsa.org/assets/pdfs/association-weekly-docs/medicare-telemedicine_factsheet.pdf

To better understand swallowing challenges and managing nutrition read http://www.alsa.org/assets/pdfs/living-with-als-manuals/lwals_08_2017.pdf

For more information on the platform trial Dr. Gray mentioned visit https://alsadotorg.wordpress.com/2020/01/17/in-case-you-missed-it-the-als-association-invests-3-million-in-first-ever-als-platform-trial-to-speed-up-clinical-trial-process/

For the article Dr. Plowman wrote in 2014 that Dr. Gray references visit https://dysphagiacafe.com/2014/10/23/nutrition-and-feeding-tube-placement-for-people-with-als-best-practice-in-clinical-decision-making/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

In this bonus episode, we check-in with Calaneet Balas, President and CEO of The ALS Association, to discuss the impact of the ongoing pandemic on the ALS community.

If you have questions about the COVID-19 pandemic or how The ALS Association is continuing to pursue its mission, please email questions@alsa-national.org.

Find your local chapter contact info by visiting: http://www.alsa.org/community/

For answers to some frequently asked questions, check out https://alsadotorg.wordpress.com/2020/03/23/questions-and-answers-about-covid-19-and-its-impact-on-people-with-als/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

Welcome to Connecting ALS, your weekly podcast from The ALS Association. This episode shines a spotlight on the public policy priorities during the COVID-19 pandemic, and how our ALS community is advocating amid extreme social distancing.

In this episode, Mike and Jeremy are joined by Kathleen Sheehan, vice president of public policy at The ALS Association, and Ashley Smith, associate director of grassroots advocacy at the Association. Kathleen and Ashley take us through digital advocacy efforts and the key public policy priorities being pursued as part of COVID-19 response legislation.

To learn about The ALS Association’s public policy priorities, visit http://www.alsa.org/advocacy/Public-Policy-Priorities.html.

To become an advocate, visit https://alsa.quorum.us/register/

To read up on the changes to telehealth access discussed in this episode, visit https://alsa.quorum.us/register/

For the Facebook Q&A Jeremy mentions visit: https://alsadotorg.wordpress.com/2020/03/23/questions-and-answers-about-covid-19-and-its-impact-on-people-with-als/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

In this episode Mike and Jeremy turn to Jennifer Hjelle, executive director of The ALS Association Minnesota/North Dakota/South Dakota Chapter to facilitate a conversation about COVID-19 with Dr. Neil Thakur, Executive Vice President of Mission Strategy at The ALS Association, Dr. Lou Libby, a pulmonologist with the Providence ALS Center in Eugene, Oregon, and Kim Maginnis, Senior Vice President of Care Services at The ALS Association.

If you have immediate questions or urgent matters please contact your local chapter.

You can also send an e-mail to questions@alsa.national.org

Links:
Lou Libby: http://www.alsa.org/about-us/leadership/board-of-trustees/lou-libby.html
Neil Thakur: http://www.alsa.org/about-us/leadership/national-staff/neil-thakur.html
Kim Maginnis: http://www.alsa.org/about-us/leadership/national-staff/kimberly-maginnis.html
COVID-19 statement: https://alsadotorg.wordpress.com/2020/03/17/march-17-update-from-als-association-president-and-ceo-calaneet-balas/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

In this episode Mike and Jeremy are joined by Dr. Neil Thakur, Executive Vice President of Mission Strategy at The ALS Association, and Mark Calmes, Vice Chair of The ALS Association's Board of Trustees, for updates on helping people living with ALS and their caregivers live longer, better lives. For resources available to people with ALS and caregivers, visit http://www.alsa.org/als-care/.

For more information about the Jane Calmes ALS Scholarship Fund that Neil mentions in the interview please visit: http://www.alsa.org/fight-als/calmes-als-scholarship-fund/

For more information on our guests and further resource guides please visit the following links:

Neil’s bio: http://www.alsa.org/about-us/leadership/national-staff/neil-thakur.html

Mark’s bio: http://www.alsa.org/about-us/leadership/board-of-trustees/mark-calmes.html

Living with ALS Resource Guides: http://www.alsa.org/als-care/resources/publications-videos/resource-guides/

Families and ALS Resource Guides: http://www.alsa.org/als-care/resources/publications-videos/families-and-als-resource-guide/

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This episode is the first in our new weekly format and hosts Mike and Jeremy were joined by Dr. Kuldip Dave, Vice President of Research at The ALS Association, and Dr. Eugene Brandon, Chair of The ALS Association's Research Committee, for a deep dive on ALS research. For more information on The ALS Association's research program and to download the research toolkit, visit als.org/research.

To learn more about the research we fund visit: http://www.alsa.org/research/research-we-fund/

To learn more about Dr. Brandon visit: http://www.alsa.org/about-us/leadership/board-of-trustees/eugene-brandon.html

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

This month we talk with Clay and Jana Ahrens about parenting while living with ALS and take a moment with Don and David who share what support group has meant to them and the importance of levity in their friendship.

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

As part of our ongoing ‘A Moment With...’ series, we recently sat down with Sarah Martin. Sarah’s mother Linda Griffiths died of ALS in June of last year, and as she continues to grieve the loss, Sarah wanted to tell the story of one of the simple joys in her mom’s life, and how that has encouraged her to carry on Linda’s spirit of generosity…

This is her story.

For full episodes of Connecting ALS, be sure to visit ConnectingALS.org or find us wherever you get your podcasts.

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Episode nine takes an in-depth look at ALS Research and the therapy development process with Dr. Jill Yersak, Senior Director of Mission Strategy at The ALS Association. Dr. Yersak discusses promising potential treatments in the pipeline (including NurOwn) and provides excellent insight into the FDA's approval process. Our conversation concludes with information about an upcoming feedback and data collection initiative called ALS Focus, which you'll be hearing more about in the near future.

Dr. Yersak mentions a few valuable resources during the episode, including; the official ALS Association Blog, the National ALS Registry, and a place where you can direct questions about research and anything else related to ALS — questions@alsa-national.org

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This week Pete Frates died at the age of 34, seven years after his ALS diagnosis. Pete altered the landscape of ALS so greatly, we felt it was necessary to take a few minutes to discuss his impact. In this brief discussion with our Chapter’s Executive Director, Jennifer Hjelle, we talk about Pete’s legacy and the massive impact he had on the ALS community. Read more about his life and legacy at https://alsadotorg.wordpress.com/2019/12/09/remembering-pete-frates-co-founder-of-the-als-ice-bucket-challenge/

This segment is excerpted from episode 8. Find the full episode in your favorite podcast app or on our site at: https://www.connectingals.org/episodes/remembering-pete-frates-preparing-for-the-holidays-and-a-moment-with-jan

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

For December we’re focusing on how we celebrate the holidays and support those living with ALS. We connected with Anne Supplee, our in-house expert, to discuss family gatherings and how to communicate with loved ones. We also continue our recurring segment "A Moment With..." This time we took some time with the Nepsund family from Osseo, MN. Jan was diagnosed with ALS in June of 2018, and she and her daughter in-law, Dawn, talked about the importance of their family holiday gatherings and what it’s been like to transition responsibilities as Jan has needed more help. Laura Winterstein wraps up this episode by talking with us about the resource ALS Care Connection and how it can help families living with ALS.

The beginning of the podcast features a brief remembrance of Pete Frates, who died this week, seven years after his ALS diagnosis. Chapter Executive Director, Jennifer Hjelle, touched on the massive impact Pete had on the ALS community. Read more about his life and legacy at https://alsadotorg.wordpress.com/2019/12/09/remembering-pete-frates-co-founder-of-the-als-ice-bucket-challenge/

For more information about ALS Care Connection visit: https://alsa.lotsahelpinghands.com/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Last month we introduced a recurring segment called "A Moment With..." These are meant to be short stories that give us a glimpse into living with ALS through moments of inspiration and joy. They will always be at the end of a full episode so we wanted to share November's story as a bonus in cased you missed it.

Find a transcript of this episode and examples of John's work on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

In November we are celebrating National Family Caregivers Month, which means recognizing all the incredible individuals who commit to caring for a loved one. That is the theme for the month and we’ve got some compelling caregiving content to share with you.

First on the docket is a conversation with Danielle Carr and Shaun Olson, both of whom have considerable experience as family caregivers. They also happen to be close friends and it was interesting to hear them share some of the lessons they learned over the years.

In the second segment we took advantage of the expertise that exists within our team at The ALS Association in an interview with Care Services Coordinator Jennifer Myhre. Jennifer has been assisting caregivers in our region for many years and helped paint a clearer picture of both the challenges they often face and the resources that are available to help. Jennifer also talks about respite care as a resource, and that's something we did a deeper dive on during our time with Jennifer on episode 2. Find it in your podcast feed or on our site at: https://www.connectingals.org/episodes/home-health-voice-banking-and-clinical-care

To jump ahead to the segment you can also head over to RadioPublic: https://radiopublic.com/connecting-als-6ND5Xl/s1!46a0b#t=3346

To wrap today’s show we're also introducing a new segment meant to provide a glimpse into the lives of individuals and families living with ALS. We’re calling it ‘A Moment With…’ and this month our producer, Garrett, spent some time with the Seidl family from the Twin Cities of Minnesota.

Find a transcript of this episode and examples of John's work on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

On Wednesday we were fortunate to have Gary and Kathy in the Connectivity Center. They were here to share their experiences as caregivers with our support group as part of National Caregivers Month. Each had a lot to say and we felt like this was something worth sharing for those who could not be in attendance. For further resources visit: http://webmn.alsa.org/site/PageNavigator/MN_8b_caregivers.html

In the conversation they bring up the value of Respite, our Durable Medical Equipment Loan Pool, and the Hrbek-Sing program. For more information on any of these programs please visit the following links:

http://webmn.alsa.org/site/PageServer?pagename=MN_8b_PS_Respite_Program
http://webmn.alsa.org/site/PageServer?pagename=MN_8_PS_Equipment_Process
http://webmn.alsa.org/site/PageNavigator/MN_8d_PS_Communication_Needs.html

If you would like information about attending a support group please visit: http://webmn.alsa.org/site/PageNavigator/MN_8_SupportGroups.html

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This month we were very fortunate to secure some time with arguably the most influential ALS specialist in the world, Dr. Richard Bedlack of Duke University. As always, Dr. Bedlack has a number of irons in the fire and we chatted about ALSUntangled, his ongoing study of ALS reversals, and where he sees research heading in the near future.

For our second segment, I sat down with Jennifer Hjelle, the Executive Director at our Chapter of The ALS Association to discuss some of the recent feedback she has received from individuals and families impacted by ALS while on a three state listening tour.

As discussed in the segment, Jen will be continuing her listening tour in St. Cloud at the Stearns History Museum (235 33rd Ave), on Thursday, October 17 (10/17), at 4:00p and in Sioux Falls at the Ronning Library (3100 E 49th St), on Wednesday, October 30 (10/30), at 4:00p. Visit our Facebook page for more information. To RSVP, email terrylynn@alsmn.org or call 612.672.0484.

Follow ALSUntangled on Twitter and be sure to check out their podcast thanks to CReATe Connect.

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This month we were able to connect with two very influential figures in the world of ALS. First we met with The ALS Association’s President and CEO, Calaneet Balas, who gave us a window into what the greater organization is working on, including how global research is funded and tracked. Calaneet is also the Chair of the Board for the International Alliance of ALS/MND Associations, so it was really interesting to discuss a range of topics with her.

That interview is followed by a phone conversation with Dr. Nathan Staff from the Mayo Clinic in Rochester, Minnesota. Dr. Staff is deeply involved in ALS research and knows the ins and outs of that universe as well as anyone we’ve ever met.

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This month we go deep on the topic of feeding tubes with two experts from the ALS Center of Excellence at Hennepin Healthcare in Minneapolis, MN. We then spend time discussing the mind body connection with globally recognized yoga instructor and author, Matthew Sanford. Both interviews feature some excellent perspective and we hope you find this episode particularly helpful. If you do, please let us know via our Facebook and Twitter channels or send us an email at ConnectingALS@alsmn.org.

To learn more about the ALS Center of Excellence at Hennepin Healthcare visit: https://www.hennepinhealthcare.org/specialty/neurology/als-center-of-excellence/

For more information about Mind Body Solutions visit: http://www.mindbodysolutions.org/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

We had the good fortune of lining up three fantastic guests on a variety of topics this month. We first brought in Dr. Sam Maiser, from Hennepin County Medical Center, to explore the benefits of palliative care following an ALS diagnosis. That was followed by a heartwarming phone conversation with Minnesota Twins icon, Kent Hrbek — where he opened up about his family’s experience with the disease. And the episode wraps up with some valuable firsthand insight from Stacy Lufkin about her journey as an ALS caregiver and fierce advocate for the cause.

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

On this month’s episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to discuss the process of voice banking. We then welcomed Dr. Ezgi Tiryaki into our studio to talk through the current model of clinical care for ALS. And lastly, we sat down with Donnie Raveling of St. Paul and Jennifer Myhre from The ALS Association to scratch the surface on the topic of home healthcare.

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

We're dropping a special bonus episode of the pod to address a developing issue that requires all of us to take action! The Centers for Medicare and Medicaid (CMS) have mandated that noninvasive ventilators (bipap) go through a competitive bidding process to set the price and award contracts to equipment companies (i.e. equipment companies submit bids on how much it will cost for an item; CMS takes the lowest bid and will only reimburse companies at that lowest price). The problem with competitive bidding in this situation is that many companies will stop supplying the devices because they can no longer make money (or will lose money) by providing these. This could make it incredibly difficult for individuals to get access to these devices and worse have access to a company close by that can repair them if something goes wrong.

To send a letter visit: https://alsa.quorum.us/campaign/20341/

For a transcript of this episode visit our post on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Welcome, everyone, to Connecting ALS, a podcast dedicated to all facets of the disease, that we will produce monthly from the headquarters of the Minnesota, North Dakota, South Dakota Chapter of The ALS Association, in St. Paul Minnesota.

For our debut episode, we had the opportunity to sit down with Ryan Tofteland to discuss ALS advocacy and his role as a voice for the community. We were able to connect with Dr. David Walk from the University of Minnesota to get his view on the current state of ALS research, as well as his own work in the field. We were then joined in studio by young ALS advocate, Serena Robb, so she could pose some important questions that have been on her mind. And finally, we chatted with Beau Bedore of the Minneapolis VA Health System and Kristin Wallock of The ALS Association about how smart home tech is changing lives.

In conversation, Beau also mentioned some new research recently published in Nature. The article is titled Speech Synthesis from Neural Decoding of Spoken Sentences. This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

For a transcript of this episode visit our post on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Connecting ALS is a podcast dedicated to all facets of the disease, coming to you from the Minnesota, North Dakota, South Dakota Chapter of The ALS Association.

Each month, we’ll highlight the latest technological and research developments, discuss advocacy efforts happening across the country, and most importantly, hear from individuals and families living with ALS on topics relevant to them.

Our hope is to educate, inspire, and bring together the diverse communities impacted by ALS.

Subscribe now at ConnectingALS.org or wherever you get your podcasts, and look for our first full episode in May.

For a transcript of this episode visit our post on Tumblr.

Connecting ALS is produced by Garrett Tiedemann and brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.