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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 […]
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 […]
By June Kinoshita, FSHD Society The pharmaceutical industry is showing a growing interest in developing therapies for facioscapulohumeral muscular dystrophy (FSHD), a rare genetic disorder affecting an estimated one million […]
Advocacy with humor and hacks Marisa Spain has a knack for making everyday advocacy both fun and impactful. Based in southeastern Michigan, Marisa brings fresh energy to accessibility awareness with […]
