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 »
The fate of the Fulcrum Phase 3 data
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 »
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 »
A passion for adventure and advocacy
Don Burke recently completed a remarkable 93-day road trip, covering 28,000 miles across 36 states and four Canadian provinces in his electric vehicle. This journey is part of why he… Read More »