[…] Mead, anthropologist Jim Albert and the Kennedy Krieger team This is a historic time in FSHD research. Therapies to slow down or stop the progression of symptoms are being tested […]
What’s being done to develop treatments
The Value of Community
Laura Adams, member of the St. Louis Chapter, shares how embracing the FSHD Community enriched their family The Value of Community I know you can inherit the flawed gene that […]
Colorado Chapter
Welcome to the Colorado Chapter! Thank you for visiting the Colorado Chapter of the FSHD Society! We are here to build a local community of patients, family and friends, and […]
Clinical trial readiness study calls for volunteers
by Jim Albert, Eldersburg, MD The FSHD Clinical Trial Research Network (CTRN) is currently recruiting up to 160 FSHD patients across the seven CTRN sites to participate in a study called […]
Extraordinary measures – Educating doctors
[…] quest to find knowledgeable clinicians − doctors, physical therapists, pulmonologists, and other specialists −who understand FSHD and can help manage their symptoms. It’s hard to fault the clinicians. There are […]