Connecting ALS

This week Jeremy talks to Dr. Paul Larkin, Director of Research at The ALS Association, about the projects funded this year through the Clinical Trial Capacity Awards program.

Learn more about the research funded through the Clinical Trial Capacity Awards program at https://www.als.org/user/login?destination=/stories-news/als-association-grants-nearly-5-million-boost-clinical-trial-capacity-and-speed

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

This week Jeremy talks to Melanie Lendnal and Lindsay Gill from The ALS Association’s public policy team to learn more about the fight for public policies that will ensure access to genetic counseling and testing and a bill in Maryland that will prohibit discrimination based on the results of a genetic test.

Learn more about the Genetic Testing Protection Act in Maryland at https://www.als.org/stories-news/als-association-leads-fight-ban-life-insurance-discrimination-states

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

Share your story about genetic testing and counseling at https://www.als.org/share-your-als-story

Learn more about genetic testing and counseling at https://www.als.org/blog/qa-how-begin-discussion-around-genetic-counseling-and-testing

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

This week Jeremy talks to a team of researchers in Australia who are looking into the ways video games can be more accessible for gamers living with ALS.

Follow Dr. Kirsten Harley’s story at https://kirstenharleymnd.home.blog/author/drkirstenharley/

Learn more about research into making video games more inclusive at https://www.mndaustralia.org.au/articles/why-videogames-matter-for-mnd-these-holidays

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

This week, Jeremy explores efforts to increase the number of clinical trials and expand access to those trials with renowned ALS researcher, Dr. Merit Cudkowicz.

Learn more about the Clinical Trial Capacity Awards at https://www.als.org/research/funding-opportunities/trial-capacity-awards-2022

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

As we take a little break this week, we invite you to revisit one of our episodes released last year featuring Her ALS Story.

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

This week Jeremy is joined by Scott Kauffman, chairman of The ALS Association board of trustees, to reflect on progress made in the fight against ALS in 2022 and to preview some of the work on the horizon in 2023.

Read The ALS Association’s 2022 Year-End Report at https://www.als.org/blog/2022-year-end-report

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

This week, Jeremy closes out the year by looking back at the successful fight to get the FDA to approve AMX0035 for the treatment of ALS.

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

This week, Jeremy welcomes Melanie Lendnal, The ALS Association’s vice president of policy and advocacy, to learn how advocacy can be deployed to make sure insurers provide access to approved treatments.

Learn more about the letters to insurers at https://www.als.org/stories-news/als-association-fights-access-relyrvio

For more information on the VA’s decision to approve access to Relyvrio go to https://www.als.org/stories-news/va-approves-access-relyvrio-veterans-living-als

Explore the drug coverage decision making process at https://share.transistor.fm/s/67de0365

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

This week, Jeremy welcomes renowned ALS researcher Dr. James Berry to discuss the latest evidence of the effectiveness of edaravone.

Learn more about the findings at https://pubmed.ncbi.nlm.nih.gov/35958519/

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

This week Jeremy shines a light on Luka, an animated robot and star of Luka & The Lights, a short film in development that was created by a person living with ALS after he had to explain his diagnosis to his young kids and create a new way to help explain the disease.

Learn more about Luka & The Lights and the work to bring it to the world at https://lukaandthelights.com/

Read about Anjo and Sasha’s story at https://lukaandthelights.com/als-stories/anjo-en-sascha/

Check out the Luka Youth Foundation at https://lukayouthfoundation.org/

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