Blog

FSHD Advocate on the Road to Clinical Trials

“Never give up, for that is just the place and time that the tide will turn.”–Harriet Beecher Stowe As we enter a new decade – one that we believe will […]

Genetic testing for FSHD—a new frontier

FSHD and COVID-19

As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the […]

How are you treating symptoms now?

Our Voice of the Patient Forum on April 21st is our community’s platform to testify to the FDA on the impact of FSHD. When the FDA considers whether to approve […]

What worries you about the future?

Our Voice of the Patient Forum on drug development for FSHD will take place on April 21st. This landmark event is our community’s platform to testify to the FDA on […]