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
You’re invited! Mobility impact study
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… Read More »
The fate of the Fulcrum Phase 3 data
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… 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 »
Fundraise YOUR way
by Kim Shanley, FSHD Society At the FSHD Society, we know that every advance is made possible by the incredible support of people like you. One way you can join… Read More »