Connecting ALS

Connecting ALS

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.

Episodes

September 29, 2022 18 min

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.

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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.

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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.

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September 7, 2022 12 min

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 htt...

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This week Jeremy revisits testimony provided by ALS advocates and ALS Association leaders at a recent public forum 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-b...

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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

 

Si...

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August 10, 2022 11 min

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 CitizenRaceca...

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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 Ci...

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July 27, 2022 25 min

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 CitizenRa...

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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 As...

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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 exper...

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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/...

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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 r...

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June 22, 2022 26 min

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 Cent...

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June 15, 2022 15 min

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 A...

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June 8, 2022 26 min

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.al...

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June 1, 2022 16 min

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/ml...

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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...

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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

Lea...

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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-cha...

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