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… Read More »
2025 Volunteer Leadership Summit
European Neuromuscular Centre Conference on Pediatric FSHD
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… Read More »
Big pharmas show growing interest in FSHD
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… Read More »
Changemaker: Marisa Spain
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… Read More »
XPRIZE for FSHD research
SOLVE FSHD, a venture philanthropic organization established to catalyze innovation in Facioscapulohumeral muscular dystrophy (FSHD) research, is partnering with the nonprofit organization XPRIZE Foundation to host a global competition to… Read More »