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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 Neurodegenerative 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.