Many people with FSHD do not see a neuromuscular doctor regularly. Told that there is no treatment, they wonder, “What’s the point?” In this video, Jeffrey Statland MD explains why… Read More »
Why have an annual check-up?
The Physiatrist’s role in managing FSH muscular dystrophy
Many of us have never heard of this field of medicine, but physiatrists are a very important resource for FSHD patients. In this video, Dr. Susan Keeshin of Shirley Ryan… Read More »
Win a day of self-care with Hollywood star Debby Ryan!
We’re excited to announce that YOU could join Debby Ryan for a self-care day in Los Angeles! Flights and hotel are included, plus donations to win benefit our work here… Read More »
2018 FSHD Connect Conference registration is now open!
Our community’s premier networking event for immersive learning and community building Our biennial FSHD Connect Conference is an amazing opportunity to meet hundreds of patients and families, as our leading… Read More »
Tips for getting your insurer to approve genetic testing
We hear often from patients and families who are having difficulty getting an insurer to pay for genetic testing of FSHD. It is our impression that the payors are denying… Read More »