This is a continuation of our Q&A session with Rabi Tawil, MD, co-director of the MDA Neuromuscular Disease Clinic at the University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of the guideline can be downloaded at… Read More »
The FSH Society’s Colorado Committee hosted their first ever local fundraiser on Saturday September 10, 2016 – a 5K WALK & ROLL at Phillip S. Miller Park in beautiful Castle Rock, Colorado! Thanks to all of our participants, sponsors, and donors, we are proud to say we generated nearly $19,000!
The cause of facioscapulohumeral muscular dystrophy (FSHD) is thought to center on DUX4, a gene that normally is silent in adult skeletal muscle. When DUX4 gets “expressed,” as happens in FSHD, it activates other destructive reactions in muscle cells and causes muscles to degenerate. Suppressing DUX4 is a logical strategy to treat FSHD, and a… Read More »
We’re excited to see this ingenious concept for a mobility device. It’s being developed by Garrett Brown, inventor of the steadycam. Shown trying out a prototype is Alan Brown, who has FSH muscular dystrophy. Alan organized the Musclepalooza fundraiser last year. Thanks to David Garden for sending us this video.
The FSH Society Board welcomes two new members, who were elected at the May 2016 Board meeting. They bring considerable business, financial, governance, and marketing knowledge with them, along with the deep commitment that comes from having loved ones who are affected by FSHD. Christine Ford is a business graduate of California State University, Sacramento. She… Read More »