[…] leaders to discuss the current state of clinical trial preparedness for facioscapulohumeral muscular dystrophy ( FSHD). The Society is the world’s largest research-focused patient advocacy organization for FSHD, a hereditary […]
FSH Society Releases White Paper on Clinical Trial Readiness
Bay Area Family Day Video and Slides
[…] talks to see the slides. Click on “video” to watch the recorded talk. Advances in FSHD treatments Getting ready for FSHD clinical trials, Jeff Statland, MD Why we think FSHD […]
More than meets the eye (and ear)
[…] difficulty adapting to the physical stresses of an active military life, he was diagnosed with FSHD Type 1. “I never imagined being medically retired from the military due to FSHD […]
Mika Mae’s story
[…] June 20, 2019, at age 32 after sustaining severe head trauma from a fall. The FSHD community mourns her tragic loss. She wrote this essay for us shortly before her […]
The Future is Now for the Voice of the Patient
At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have […]