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,… Read More »
Listen to our Giving Tuesday Interviews
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… 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… 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,… Read More »
The Future is Now for the Voice of the Patient
At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have… Read More »