Connecting ALS

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 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-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 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.