by June Kinoshita, FSHD Society At a recent Feeling Fit Zoom gathering, Cheryl Clulow, who had logged in from her home in Cape Town, South Africa, mentioned that she has… Read More »
Rebounding exercises
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 »
You’re invited! Mobility impact study
Nils Hakansson (he also goes by Alex) is a professor in the College of Engineering at Wichita State University. He has FSHD and is working on projects to help improve… 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 »