The current COVID-19 crisis has forced us to postpone the Voice of the Patient Forum. We will be rescheduling it for the earliest feasible date. In the meantime, we hope… Read More »
What would be meaningful benefits of future treatments?
FSHD Advocate on the Road to Clinical Trials
“Never give up, for that is just the place and time that the tide will turn.”–Harriet Beecher Stowe As we enter a new decade – one that we believe will… Read More »
Genetic testing for FSHD—a new frontier
Several genetic diagnostics labs now offer a test called whole-genome optical mapping for FSHD Type 1. Some also offer a neuromuscular panel that includes FSHD Type 2. These are major… Read More »
FSHD and COVID-19
As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the… Read More »
How are you treating symptoms now?
Our Voice of the Patient Forum on April 21st is our community’s platform to testify to the FDA on the impact of FSHD. When the FDA considers whether to approve… Read More »