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 »
A Monument of Pearls
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 »
ABC’s of Clinical Trials for FSHD [VIDEO]
We’re pleased to share with you this video recording from the FSHD Society’s webinar, “ABC’s of Clinical Trials,” given on December 7, 2019. Our webinar speaker is Rabi Tawil MD, a foremost authority on FSH muscular dystrophy. Dr. Tawil is director of the Fields Center for FSHD Research at the University of Rochester in… Read More »
I thought I would never find happiness ever again
BY KRISTIN ZWICKAU CHARLESTOWN, MASSACHUSETTS It was October 2017. I thought I would never find happiness ever again following our daughter’s diagnosis of FSHD. She was six at the time, and we had never heard of the disease before. Now it is a part of our everyday life. It was overwhelming. During the early days… Read More »