Connecting ALS

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

Learn more about ALS research at https://www.als.org/research/research-we-fund

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

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-challenge

For more information about the YCare program go to https://www.als.org/blog/training-program-gives-young-caregivers-confidence-peer-support

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

This week, Jeremy kicks off ALS Awareness month by sitting down with Scott Kauffman, chairman of The ALS Association Board of Trustees, to talk about his connection to ALS and his vision for leading the fight against the disease.

Find ways to get involved in the fight against ALS at https://www.als.org/get-involved

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

This week, Jeremy talks to Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Disease to talk about their recent report on the economic burden of rare diseases.

To read the EveryLife Foundation’s report, go to https://everylifefoundation.org/burden-study/

Learn more about navigating the financial harms associated with ALS at https://www.als.org/navigating-als/financial-information

Sign up to become an advocate at https://www.als.org/advocacy

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

This week Jeremy talks to Lindsay Litterini about why she volunteers in the fight against ALS and checks in with Stephanie Dobrak, executive director for the Alliance for Connected Care, to learn what advocates can do to protect access to telehealth.

Learn more about Lindsay’s connection to ALS at https://www.als.org/blog/lindsay-litterini-why-i-am-als-volunteer

To stay up to date on The ALS Association’s public policy priorities, go to https://www.als.org/advocacy/our-priorities

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

Find ways to volunteer at https://www.als.org/get-involved/volunteer-fight-against-als

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

This week Jeremy talks to Daniel Cramer, associate director of public policy initiatives at The ALS Association, who explains why he is signing a petition calling on insurers to ban the use of discriminatory value assessments that limit access to ALS drugs.

Learn more about the ICER petition at als.org/icer

Sign the petition at https://als.quorum.us/campaign/ALSdrugaccess/

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

This week Jeremy talks to Dr. Matthew Kiernan, a neurologist at the Brain and Mind Centre at the University of Sydney in Australia and the recipient of the 2022 Sheila Essey Award about the state of ALS research.

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

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

This week Jeremy talks to Dr. Kuldip Dave, vice president of research at The ALS Association to explore clinical trials – how they work, who can participate in trials, and what is being done to create more trials at more locations that include more people.

To learn more about clinical trials for people living with ALS go to https://www.als.org/research/clinical-trials-for-patients

Find out more about the investigational trials funded through The ALS Association’s Clinical Trials Awards Program at https://www.als.org/blog/four-trials-selected-als-associations-clinical-trials-awards-program

Learn more about the projects recently funded through the Lawrence & Isabel Barnett Drug Development Program at https://www.als.org/stories-news/six-drug-development-projects-awarded-nearly-3-million-als-association

For more information about how the thinkALS tool is speeding up the time to diagnosis, go to https://www.als.org/thinkals

Find out more about genetic testing 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.

This week Jeremy talks to Dr. Shannon Terrell, a physical therapist who has worked in an ALS multidisciplinary care setting about ways to maintain mobility while living with ALS and her role in a new series of educational videos produced by The ALS Association.

Find the educational videos on mobility and independence at https://www.als.org/navigating-als/living-with-als/therapies-care/mobility-als/strategies-maintaining-mobility

For insight on maintaining mobility and independence while living with ALS, check out https://www.als.org/blog/living-als-maintaining-your-independence-mobility-declines

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

This week, Jeremy talks federal appropriations and the fight to secure funding for ALS research with Denise Bailin, director of government affairs and policy at The ALS Association. He then pivots to learn more about efforts to fund the fight against ALS at the Minnesota statehouse.

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

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

Learn more about the public policy push in Minnesota at https://als.quorum.us/campaign/MNapprops2022/

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