Connecting ALS

This week Jeremy welcomes Rich Brennan, vice president of federal affairs at The ALS Association to provide an update on Medicare coverage of seat elevation in power wheelchairs, and talks to Katie Adams, an advocate in Kentucky who helped lead the charge to bring Medigap coverage to Kentuckians living with ALS.

Learn more about the fight for Medigap coverage at https://www.als.org/our-priorities/state-public-policy-priorities#medigap

For more information on Medicare coverage of seat elevation go to https://www.als.org/stories-news/big-win-als-community-als-association-and-advocates-instrumental-medicare-decision

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

This week, Jeremy welcomes Dr. Terry Heiman-Patterson, professor of neurology at the Lewis Katz School of Medicine at Temple University and director of the Temple MDA/ALS Center of Hope, to talk about her work looking into ways to expand access to clinical trials for historically underserved populations.

Learn more about The ALS Association’s Clinical Trial Capacity Awards program at https://www.als.org/stories-news/als-association-grants-nearly-5-million-boost-clinical-trial-capacity-and-speed

This week, Jeremy is joined by Sara Van Geertruyden, executive director of the Partnership to Improve Patient Care, to talk about legislation moving through Congress that would extend prohibitions on the use of quality adjusted life years (QALYs) in drug pricing and access decisions.

Read the National Council on Disabilities report finding QUALYs to be discriminatory at https://ncd.gov/sites/default/files/NCD_Quality_Adjusted_Life_Report_508.pdf

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

This week, Jeremy is joined by Larry Falivena, a member of The ALS Association’s Board of Trustees and Dr. Kuldip Dave, vice president of research at The ALS Association, for reaction to the decision by an FDA advisory committee to clear the path for approval of tofersen – and why it’s important for the future of the drug development pipeline.

Read more about why the tofersen decision is important for everyone at https://www.als.org/blog/heres-why-fda-committees-recommendation-tofersen-matters-everyone

Read more on the potential role neurofilament light can play in drug development at https://www.biopharmadive.com/news/neurofilament-als-drug-development-fda-biomarker/646048/ 

Listen to our conversation with Dr. Michael Benatar about his research on using gene therapies to prevent ALS at https://share.transistor.fm/s/1ac18819

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

This week, Connecting ALS celebrates Women’s History Month by shining a spotlight on two researchers who are leading the quest to change the future of ALS.

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

This week, Jeremy is joined by Denise Bailin, Director of Congressional Affairs at The ALS Association for a deep dive into the role federal funding plays in the fight against ALS and how advocates can help expand existing funding on ALS.

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

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. Neil Thakur about The ALS Association’s comments to the FDA urging them to approve tofersen, a gene therapy targeting SOD1 mutations. He then digs into the tofersen clinical trials with lead investigator Dr. Timothy Miller.

For more information on genetic testing and counseling go to 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 explores The ALS Association’s expanded efforts to advocate for better public policies in states throughout the country to help make ALS livable for everyone, everywhere. He is joined by Kara Nett Hinkley, National Vice President of State Policy for The ALS Association.

 
Learn more about state advocacy efforts at https://www.als.org/advocacy/state-policy-advocacy

For more information about the public policy priorities go to https://www.als.org/our-priorities/state-public-policy-priorities

Read up on the fight to pass the Genetic Testing Protection Act in Maryland at https://www.als.org/stories-news/als-association-leaders-press-md-lawmakers-pass-genetic-testing-protection-act

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

Welcome to Connecting ALS. This week, Jeremy talks to an international team of researchers exploring ways to improve the way health care professionals can break the news more effectively.

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

This week Jeremy digs into what we know about familial ALS and the current state of research into developing gene therapies that could treat the disease. He is joined by Larry Falivena, a member of The ALS Association’s board of trustees, and leading ALS researcher Dr. Michael Benatar.

Learn more about familial ALS at https://www.als.org/understanding-als/who-gets-als/familial

Read up on the fight for the Genetic Testing Protection Act in Maryland at https://www.als.org/stories-news/als-association-brings-fight-genetic-testing-protection-act-maryland-senate

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

Additional information on genetic testing can be found 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.