BY ALEXANDREA COMSTOCK LETHBRIDGE, ALBERTA, CANADA I grew up not knowing what was wrong with me as I faced the consequences of what I eventually learned was early-onset FSHD. I had foot drop. I couldn’t close my eyes. I had severe scapular winging, scoliosis, and lordosis. People called me “duck” and would quack at me…. Read More »
AFOs with a sparkly dress
It’s Time to Act: Take Our Muscle Biopsy Survey
Over the years, researchers have relied on the generosity and courage of our patient community who volunteer for important clinical studies in FSHD. Many of you have given your valuable time, undergone complicated muscle strength test, filled out endless questionnaires and even volunteered to give muscle biopsies so scientists can better understand FSHD disease progression…. Read More »
A Monument of Pearls
BY BELINDA MILLER MANASSAS, VIRGINIA The United States contains some of the most magnificent monuments in the world, both natural and human-made. But few compare to the state of South Dakota’s Mount Rushmore – the massive granite crag sculpted to honor some of our most iconic leaders. A lesser-known South Dakotan, but equally impressive, is… Read More »
Listen to our Giving Tuesday Interviews
You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment… Read More »
It’s Time To Act: Take our Genetic Test Survey
We are entering a time of great hope for individuals with FSH muscular dystrophy, as new treatment approaches target the root genetic cause of the disease. But this means that people will need a genetic test for FSHD in order to participate in clinical trials and to be prescribed these treatments (once they get approved… Read More »