Celebrating Women in FSHD: International Women’s Day 2025 In honor of International Women’s Day, join us in celebrating many of the amazing women advancing research and creating community for folks… Read More »
International Women’s Day 2025
Press Release: FSHD Society Strengthens Leadership with Experts in Healthcare, Biotech, and Market Access
FSHD Society Strengthens Leadership with Experts in Healthcare, Biotech, and Market Access FOR IMMEDIATE RELEASE RANDOLPH, Mass., Feb. 26, 2025 — The FSHD Society, a leading nonprofit dedicated to advancing… Read More »
2025 Volunteer Leadership Summit
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 »
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 »