Connecting 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, 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. 

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

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-decisionThis 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-everyoneRead 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/1ac18819This 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-testingThis 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-advocacyFor 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-actThis 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.

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-speedThis 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-testingThis 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-holidaysThis 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-2022This 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-reportThis 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/67de0365This 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.

Today, we close out our week of special programming centered on The International Alliance of ALS/MND Associations annual meeting and Allied Professionals Forum with a conversation with Cathy Cummings, the Alliance's executive director. Cathy lays out what she sees on the horizon in the global fight against ALS.This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy talks to Guðlaug Gísladóttir, a presenter at this year's Allied Professionals Forum and a dietician at the National University Hospital of Iceland, about ways to make meal times and eating more enjoyable for people living with ALS. For tips on maintaining good nutrition while living with ALS go to https://www.als.org/navigating-als/resources/maintaining-good-nutrition-alsThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy talks to Dr. Colleen O'Connell, Medical Director at New Brunswick's Stan Cassidy Centre for Rehabilitation and Clinical Research Director of University of New Brunswick Institute of Biomedical Engineering, who delivered the keynote address during the International Alliance of ALS/MND Associations' annual meeting, talking about the right of everyone living with ALS to a quality of life.This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy checks in from the International Alliance of ALS/MND Associations for an update on access to high quality care around the world and talks to Maureen Clark, Director of Business Intelligence at The ALS Association about efforts to build a clinic locator map. Learn more about multidisciplinary care for people living with ALS at https://www.als.org/local-support/certified-centers-clinics Find an ALS clinic near you at https://www.als.org/local-support/certified-centers-clinics/locatorThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

Today, Jeremy kicks off a week of coverage in conjunction with the International Alliance of ALS/MND Associations' meeting and the Allied Professionals forums by connecting with Calaneet Balas, President and CEO of The ALS Association, and Chair of the International Alliance. You can follow The International Alliance of ALS/MND Associations on Twitter at https://twitter.com/ALSMNDAlliance Keep up with The International Alliance of ALS/MND Associations via Facebook at https://www.facebook.com/TheIntlAllianceThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes members of Her ALS Story to talk about the power of connecting with people who are on a similar journey while living with ALS. Learn more about Her ALS Story at https://heralsstory.org/This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy is joined by Gerald McCormick, a veteran living with ALS former state lawmaker in Tennessee, reflecting on the connection between ALS and military service and digging into some ways to engage in advocacy to move the fight against ALS forward. Learn more about the connection between ALS and military service at https://www.als.org/navigating-als/military-veterans Find the full report on ALS and the military at https://www.als.org/sites/default/files/2020-04/navigating-als_military-veterans_als-in-military-white-paper_0.pdf Read stories of veterans who have been impacted by ALS at https://www.als.org/navigating-als/military-veterans/wall-of-honorThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy welcomes Kristina Woody on to talk about her role as a caregiver to her husband, Lamar, and to reflect on what more we can do to support family caregivers. For more information on how to support caregivers, go to https://www.als.org/navigating-als/for-caregivers Learn more about caregiver needs at https://www.als.org/research/als-focus/survey-results/survey-3-results Read about the Woody family at https://www.als.org/blog/woody-family-living-alsThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week, Jeremy is joined by Daniel Cramer from The ALS Association advocacy and public policy team and Jann Vasiloff, a leading advocate of the Justice for ALS Veterans Act about the fight to make sure surviving spouses have access to the benefits they deserve. Tell your member of Congress to support the Justice for ALS Veterans Act by going to https://als.quorum.us/campaign/42907/ Learn more about the Justice for ALS Veterans Act at https://www.als.org/stories-news/als-association-urging-congress-act-justice-als-veterans-actThis episode is brought to you by The ALS Association in partnership with CitizenRacecar.

This week Jeremy talks to Lamar Woody, who was diagnosed with ALS in 2018, about his life, his family and what he's doing to help create a world without ALS. To follow the Woody family's story over the coming weeks, check out The ALS Association's blog at https://www.als.org/blog