by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally… Read More »
Extraordinary measures – Educating doctors
FSHD Inspires Sam Ray to Build Mobility Devices
by Paul Winn, Brain & Life. Reposted with permission. Sam Ray, a 15-year-old, in Tucson, AZ, talks to our writer Paul Wynn about how his rare disease motivated him to… Read More »
Women on Wellness – Clothing Hacks and more
The “Women on Wellness” Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with… Read More »
Pregnancy and reproductive genetic counseling
One of the questions we are often asked is how will pregnancy and child-bearing affect an individual with FSHD? And because FSHD is passed on from generation to generation, what… Read More »
FSHD Masterclass for physicians is available on-demand
100% of doctors who took the live version said they would recommend this course to their colleagues. The FSHD Society’s highly rated CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD) is… Read More »