Connecting ALS
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© 2021 The ALS Association
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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
202 Episodes
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In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.Today’s episode, which originally ran on July 23rd of this year, is a conversation between two of our favorite people, Jeremy and Brooke Eby. She’s a social media influencer living with ALS who always finds ways to confront her condition with grace, humor, and style.
In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.In this episode, from May 25th of 2023, Jeremy spoke with 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.
In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. In this episode, which originally aired on June 9th, 2022, Jeremy talks to Dr. Neil Thakur, Chief Mission Officer at The ALS Association, and Melanie Lendnal, the Association’s senior vice president of policy and advocacy, about the role of advocacy, and how’s it’s central to the fight for improving the lives of people living with ALS.
In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community. This episode, which first aired on February 16th 2023, is a conversation between host Jeremy Holden, ALS Association Trustee, Larry Falivena and neurologist and leading ALS researcher, Dr. Michael Benatar. They talk about interesting new developments in what we understand about the genetic underpinnings of ALS, and how that understanding might someday lead to interesting new treatments.
In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.In this episode, which first aired on April 15th 2021, Sandra Sullivan, The ALS Association’s Director of Chapter Communications, talks to Sarah Trott, a former contestant on The Bachelor, about her connection to ALS and her work trying to support and connect young caregivers like herself around the country.
In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.In today’s episode, which first aired on August 4th, 2022, Jeremy talks to Maceo Carter and Heather Ansley from the Paralyzed Veterans of America about the ins and outs of traveling with a disability – particularly the challenges of traveling by air.
In light of the recent and unexpected passing of our longtime host, Jeremy Holden, Connecting ALS is taking a pause to regroup. During this time, we’ll be revisiting impactful past episodes that continue to resonate with the ALS community.In today’s episode, which first aired on Nov 4 2021, Jeremy celebrates Family Caregivers’ Month with guest co-host Steve Becvar, who is the executive director of The ALS Association’s Greater San Diego Chapter. They speak with Ann Larson, who was caregiver to her husband during his fight against ALS, and Jennifer Meyer, care services coordinator at The ALS Association MN/ND/SD Chapter.
This week, Jeremy welcomes Kathleen Sheehan, Vice President of Public Policy at The ALS Association, for an update on the National Academies of Sciences, Engineering, and Medicine Committee’s action plan to make ALS livable and to accelerate the search for treatments. Learn more about the NAS working group at https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-lifeThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.
This week, Jeremy talks to Dr. Kelly Gwathmey, Chair of Neuromuscular Neurology at Virginia Commonwealth University, about recent research showing racial disparities in the time it takes to confirm an ALS diagnosis.Learn more about the research conducted at VCU at https://www.sciencedirect.com/science/article/pii/S0022510X20303919 For more information about the importance of a timely diagnosis, go to https://www.als.org/thinkals/benefits-timely-diagnosisThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.
This week, Jeremy kicks off National Wellness Month with Melissa Enfinger from The ALS Association’s Care Services team. To participate in research into the mental health and wellness needs of people living with ALS, go to https://milwaukee.qualtrics.com/jfe/form/SV_4I9CXsunR8LrTYaThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.
This week, Jeremy catches up with Brooke Eby, a social media influencer living with ALS, about her efforts to raise awareness of ALS and critical funding for ALS research, and how she uses levity and humor along the way. Find ways to follow Brooke’s journey at https://hoo.be/limpbroozkit Check out Brooke’s appearance on Today at https://www.today.com/video/meet-the-woman-facing-als-with-heart-and-humor-174780997741 Listen to Brooke’s conversation with Lorri Carey at https://imdyingtotellyoupodcast.com/uncategorized/fighting-als-with-humor-brooke-eby/ To learn more about August Advocacy Action Month go to https://www.als.org/advocacy/action-centerThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.
This week, Jeremy explores some of the ongoing fights to make insurance work more effectively for people living with ALS. He is joined by Shannon Todd from The ALS Association’s Care Services team and ALS advocate Katie Adams, who updates us on her ongoing fight for insurance coverage of her power wheelchair. Learn more about Katie Adams’s story at https://www.als.org/blog/katie-adams-fighting-change-everyone-als Read about the support available to help navigate insurance barriers at https://www.als.org/blog/katie-adams-fighting-change-everyone-als For more information on the ways insurers erect barriers to access at https://www.als.org/blog/breaking-barriers-fight-make-health-care-affordable-and-accessibleThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.
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-dayThis 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-africaThis 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-interfaceThis 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.
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