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 »
ABC’s of Clinical Trials for FSHD [VIDEO]
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 »
#GivingTuesday Telethon
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on December 3, and we are marking the day by… Read More »
The Future is Now for Natural History Studies
Here’s what keeps us up at night: researchers will find a drug that actually works, and yet without understanding the natural history of the disease, they can’t prove the drug… Read More »