Our look is new. Our purpose is the same. Learn more about our brand evolution.
FOR IMMEDIATE RELEASE RANDOLPH, Mass., Feb. 26, 2025 — The FSHD Society, a leading nonprofit dedicated to advancing research and improving the lives of individuals with facioscapulohumeral muscular dystrophy (FSHD), […]
Powered by love and resilience by Beth Johnston, FSHD Society “It’s not just about giving back—it’s about growing, having fun, and being part of something truly impactful.​” – anonymous “Seeing […]
Nils Hakansson (he also goes by Alex) and is a professor in the College of Engineering at Wichita State University. He has FSHD and is working on projects to help […]
This invaluable data is coming to the FSHD Society by Lucienne Ronco, PhD, FSHD Society When a clinical trial fails, what happens to the data? It may include hundreds of […]
by Ally Roets, Tucson, Arizona I was honored to attend the Pediatric FSHD European Neuromuscular Centre (ENMC) conference in Amsterdam, Netherlands, this past October. I was invited as a parent […]
