Connecting ALS

This week Jeremy explores some of the barriers insurers establish that make it difficult to use insurance for essential health care needs, and talks to Kara Nett Hinkley, National Vice President of State Advocacy at The ALS Association, about some of the work being done to break down those barriers.

Learn more about the ALS Focus results at https://www.als.org/research/als-focus/survey-results/survey-6-results

Become an advocate at https://als.quorum.us/sign_in/

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

This week, Jeremy reflects on some recent news in the ALS community and looks back on a discussion of the challenges of traveling while living with ALS.

Read the National Geographic article on the ALS Ice Bucket Challenge at https://www.nationalgeographic.com/science/article/als-ice-bucket-challenge-research-impact

Find the New Yorker article (password required) on the FDA’s path to approving AMX0035 at https://www.newyorker.com/magazine/2023/06/26/relyvrio-als-fda-approval

Learn more about The ALS Association’s new research grant programs at https://www.als.org/stories-news/new-grants-seek-optimize-als-care-and-improve-quality-life

This week, Jeremy talks to Calaneet Balas, President and CEO of The ALS Association and Chair of the International Alliance of ALS/MND Association, about the state of the global fight against ALS.

Learn more about the fundamental rights of people living with ALS/MND at https://www.als-mnd.org/support-for-pals-cals/pals-and-cals-rights/

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

This week, we look at the latest headlines in the fight against ALS and commemorate Juneteenth by looking back on a discussion of racial disparities in ALS.

Read the inspiring story of Matt and Laurel Cluthe at https://alstexas.org/als-legacy-and-baseball-the-cluthe-family-story/

Urge your congressmen to support the Justice for ALS Veterans Act at https://als.quorum.us/campaign/48277/

Learn more about Lou Gehrig Day 2023 at https://www.als.org/blog/als-community-and-major-league-baseball-come-together-celebrate-lou-gehrig-day

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

This week Jeremy welcomes back Dr. Melinda Kavanaugh to learn about the Global Neuro YCare Foundation and efforts to support young caregivers around the world.

Find resources to support young caregivers at https://www.als.org/navigating-als/resources/Youth-Education

Read about Dr. Kavanaugh’s work to bring YCare to South Africa at https://www.als.org/blog/als-around-globe-help-young-caregivers-south-africa

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

This week, Jeremy talks to Leslie Ryan, Senior Director of Education and Professional Competencies at The ALS Association about the new My ALS Journey tool, a web-based platform that provides personalized guidance and support to people living with ALS.

Learn more about My ALS Journey at www.alsjourney.org.

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

This week, Jeremy is joined by the co-directors of the UC Davis Neuroprosthetics Lab, Dr. Sergey Stavisky and Dr. David Brandman, to learn more about their research testing the feasibility of intracortical Brain Computer Interface technology to restore speech.

Learn more about The ALS Association’s Seed Grant Program at https://www.als.org/stories-news/new-seed-grant-program-seeks-support-exploratory-als-research

For more information on research into using iCBIs to restore speech and trial participant criteria, go to https://www.ucdavis.edu/news/clinical-trial-aims-develop-new-methods-restore-speech-brain-computer-interface

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

This week, Jeremy is joined by Laura Kildow, Karin Kildow, and hall of fame Olympic skier Lindsey Vonn to talk about their mother, Lindy Krohn Lund, who lost her one year battle with ALS in August 2022.

Learn more about Lindy Krohn Lund at https://www.vaildaily.com/news/obituary-lindy-krohn-lund/

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

This week, Jeremy talks to Dr. Paul Larkin, director of research at The ALS Association, and Dr. Frank Bennett, Chief Scientific Officer at Ionis and a pioneer in the field of antisense oligonucleotide research, about the FDA’s approval of tofersen and the future of ALS drug development.

To learn more about why the FDA’s decision on tofersen matters to everyone, check out: https://www.als.org/blog/tofersen-approved-sod1-als

For more information on antisense technology go to: https://www.als.org/research/research-we-fund/scientific-focus-areas/genetics/antisense-therapy-for-als

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

This week Jeremy talks to Dr. Virginia Lee, a pioneering biochemist and neuroscientist who was awarded the 2023 Sheila Essey Award.

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

For more on the Essey family’s legacy, go to https://www.als.org/blog/memoriam-remembering-dick-essey

Read the latest on the FDA’s decision to approve tofersen at https://www.als.org/blog/tofersen-approved-sod1-als

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