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 »
FSHD Inspires Sam Ray to Build Mobility Devices
Extraordinary measures – An FSHD Society for everyone
by June Kinoshita, FSHD Society Our mission at the FSHD Society is to find treatments and a cure for FSHD—and then make sure everyone in the world who needs it… Read More »
His father’s FSHD inspired scientist to make a breakthrough
Is this the ticket to gene therapy for muscle diseases? by June Kinoshita, Director of Research and Patient Engagement A lot of emails cross my desk every day, but one… 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 »