The Duke Doctor Who Made ALS His Life’s Work

Why does hope matter in ALS, and what is the latest research showing? Duke neurologist Dr. Richard Bedlack shares how he came to specialize in ALS, what people living with ALS have taught him, and the work he's doing now to create more options. In this episode of My ALS Story, Dr. Bedlack, who directs the ALS program at Duke University, traces his path from a curious kid in Cromwell, Connecticut, to one of the best-known ALS clinicians and researchers in the country. Moderators Cathy Standish (an ALS widow) and Charles Edens (a person living with ALS) join him for the conversation, followed by questions from the audience. In this webinar, you'll hear about: - The moment in his residency that set him on a path to ALS care - The "Often Awesome Army" and the swallow tattoo that shaped his approach - Why hope is more than optimism: it's optimism plus agency, and a way to support well-being - "Stitching strength" and the Turbocharged Living Tool, a 12-question measure of kindness, humor, and compassion - Why so few people with ALS joined research studies, and how the ALS Clinical Research Learning Institutes train patient "Research Ambassadors" - How patient advocates helped win federal ALS research funding, including the Act for ALS - ALS Untangled, which reviews unproven treatments and flags the red flags to watch for - What ALS reversals and slow progression may teach us, including work on the gut microbiome and a genetic clue - How to choose a clinical trial: what are you willing to put up with? - Audience questions on supplements, genetic testing, and getting involved in research Whether you're living with ALS, caring for someone who is, or working in research or care, this conversation offers both real information and real encouragement. Please note: this webinar is for general information only. It is not medical advice, and it does not endorse any specific treatment or supplement. Talk with your care team about decisions for your own situation. Part of our My ALS Story series. http://ALS.Community is a free, one-stop platform for everyone impacted by ALS. We bring together patients, caregivers, family, clinicians, and researchers to share, learn, and connect. Join our community today: http://www.als.community Follow Us: Instagram: https://www.instagram.com/als.community/ Facebook: https://www.facebook.com/als.community #ALS #ALSResearch #HopeAndALS