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Unraveling ALS: Environmental Insights Ahead by Stephen Goutman
46:14

Unraveling ALS: Environmental Insights Ahead by Stephen Goutman

Stephen Goutman, MD, MS, FAAN is an Associate Professor in the Department of Neurology, Director of the Pranger Amyotrophic Lateral Sclerosis Clinic, and Associate Director of the ALS Center of Excellence at Michigan Medicine. After obtaining a degree in neuroscience at the Johns Hopkins University (Baltimore, MD), Dr. Goutman completed his medical degree at the University of Chicago Pritzker School of Medicine (Chicago, IL) and his neurology residency and neuromuscular fellowship at Cleveland Clinic (Cleveland, OH). He received a Master’s in Clinical Research Design and Statistical Analysis at the University of Michigan (Ann Arbor, MI). Inspired by his patients, Dr. Goutman’s research focuses on identifying new mechanisms and therapies for ALS. Specifically, he has been seeking to understand the genetic and environmental interactions that alter susceptibility to ALS, especially in the State of Michigan, which has some of the highest rates of ALS in the country. With funding from the National Institutes of Health, the Centers for Disease Control and Prevention, and the ALS Association, he is discovering environmental risk factors associated with the onset and progression of ALS by collecting epidemiologic exposure surveys and biofluids from individuals with and without ALS. The ultimate goal is to one day make ALS a preventable disease. Dr. Goutman serves as the site principal investigator of several multi-site clinical trials focused on identifying new ALS treatments. He is an active participant with the Northeast ALS Consortium (NEALS) and has close to a decade of experience leading ALS clinical trials at University of Michigan.
Harnessing The Power of Citizen Research By Mcfinn Lovere, Dave Shulman Michael Thayer  Janie Gobeli
01:35:52

Harnessing The Power of Citizen Research By Mcfinn Lovere, Dave Shulman Michael Thayer Janie Gobeli

McFinn Lovere was diagnosed with ALS in 2006 at UCSF, Mcfinn was only able to move his head and two fingers. His spirituality and team of caretakers gave him HOPE and he is documented as the 42nd "ALS Reversal" by Dr. Bedlack. At EverythingALS, he aims to bring meaning, hope, and an uplifting atmosphere to a community that He knows very intimately and one that needs it most. Diagnosed in 2023 with limb onset ALS, Dave Shulman has quickly plugged into the ALS landscape and uses his strategic and commercial experience to push for faster, more efficient, progress towards better outcomes for all ALS families. Dave has no medical training whatsoever, but has picked up a few things as an ALS research ambassador, ALS international patient fellow, and person living with ALS. He lives in Summit, New Jersey with his wife, two children and new puppy. Michael Thayer is from Brockton, MA. 66 year old singer/actor, insurance salesman, Tile business owner. Also, husband of Pamela for 42 years residing now in Attleboro, MA. Michael’s ALS journey began in Aug 2021 involving left finger weakness when playing his guitar. Janie Gobeli serves as an advisory committee member for the HEALEY ALS Platform Trial and the QurAlis/CISCRP Global Patient Advisory Board, an ALS Research Ambassador for the Northeast ALS Consortium (NEALS), and a reviewer for the Les Turner ALS Foundation’s educational materials and programs. She was diagnosed with ALS in 2021. As a former elementary education teacher and licensed cosmetologist, she is proud to work as an ALS educator, advisor, and speaker because it allows her to be a voice for all ALS warriors and follow her lifelong passion for learning and educating others. Learn more: www.everythingals.org/events
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