top of page
How to Slow ALS Progression
Join us for an inspiring and informative expert talk on How to Slow ALS Progression with Dr. Eduardo Locatelli, MD. Dr. Eduardo Locatelli, M.D., serves as the Medical Director of the Nova Southeastern University (NSU) Health Neuroscience Institute. Prior to this role, he played a key leadership role at Holy Cross Hospital (HCH) in Fort Lauderdale, where he spearheaded the establishment and growth of the Phil Smith Neuroscience Institute.
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
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
Developing a Robust Diagnostic Test for ALS by Dr. Sandra Banack from Brain Chemistry Labs.
Dr. Sandra Banack, Senior Scientist at Brain Chemistry Labs in Jackson Hole, WY, is a renowned researcher with a Ph.D. in Integrative Biology from UC Berkeley. Formerly a full professor at California State University, she now leads a global consortium of 50+ scientists focused on neurodegenerative diseases. Her groundbreaking work links environmental neurotoxin BMAA to diseases like Alzheimer's and ALS. Dr. Banack's research extends to biomarkers, exosomes, and diagnostic tools, revolutionizing our understanding of brain health. Dr. Paul Alan Cox, an esteemed ethnobotanist, delves into the ecology of island plants and their significance to indigenous communities. With over 180 scientific papers, he's recognized as one of TIME's "Heroes of Medicine." Formerly a director at the National Tropical Botanical Garden, he currently heads the Institute for Ethnomedicine. Dr. Cox's conservation efforts in Samoa earned him the Goldman Environmental Prize, showcasing his commitment to preserving indigenous cultures and ecosystems. Learn more: www.everythingals.org/events
Major Health Insurers Delay or Deny Home Ventilation for People with ALS. What Can Be Done?
About our speakers: Dr. John Hansen-Flaschen is the Paul F. Harron Jr. Family Emeritus Professor of Medicine at the University of Pennsylvania. He served from 1990 through 2014 as the Chief of the Pulmonary, Allergy and Critical Care Division at Penn. As Division Chief, Dr. Hansen-Flaschen founded the multidisciplinary Paul Harron Lung Center at Penn. Kathleen Sheehan has served as Vice President of Public Policy for the ALS Association since December of 2016. In this role, Kathleen and her team are responsible for advocating with Congress and policy makers to provide more funding for ALS research across several federal agencies including the Department of Defense ALS research program, the NIH and the National ALS Registry and Biorepository at CDC. Learn more: www.everythingals.org/events
"The Art of Showing Up" 26 Years of Tending to and Caring for PALS and CALS.
Mr. Ron Hoffman co-founded the Gordon T. Heald ALS fund along with Elizabeth Heald following the death of her husband Gordon in 1998. In time, Ron’s work led to the creation of the nonprofit organization Compassionate Care ALS. He has served as the founder and director working with thousands of individuals, families and communities living with ALS in the US and around the world. He facilitates and guides intimate discussions for those engaged in the complexities of living with and dying with ALS. Ron’s work helps examine the many choices and possibilities that people confront including the process of death and dying and the questions that arise as together they create space for dialogue around their decisions.
bottom of page