Our Dallas support group meeting on January 19th featured outstanding presentations and hands-on demonstrations of muscle activation and the Rolf method, which one of our new Dallas-area members has found very beneficial in addressing his FSHD issues. Note that these methods have not been studied scientifically for efficacy in FSHD; we are simply sharing patients’… Read More »
Muscle activation strategies for FSH muscular dystrophy
High-intensity exercise training in FSHD
by Amanda Hill If you or a loved one is affected by FSHD, or any muscular dystrophy for that matter, chances are that you’ve heard it’s best not to exercise, just to avoid damaging or “using up” what healthy muscle is left. There is a pervasive uncertainty and fear among patients and doctors alike that… Read More »
Rochester FSHD Family Day videos
Watch the videos here. The University of Rochester Fields Center for FSHD Research has posted a summary and videos from the 6th annual FSHD Family Day Conference held on April 7, 2018. Jointly sponsored by the University of Rochester, Leiden University Medical Center, and the FSH Society, the meeting presented the latest developments in FSHD… Read More »
Bed yoga: Four easy poses to start or end your day
by KATHY SENECAL, Cromwell, Connecticut I became a yoga practitioner in the early 1990s, and over time I received certification and training in hatha and Svaroopa® yoga, taught classes, and ran workshops in those traditions for 10 years. I went on for advanced training as a yoga therapist, and after being diagnosed with FSHD, I began… Read More »
Los Angeles FSHD Family Day videos
We are pleased to share these videos from our 2017 FSHD Family Day conference in Los Angeles, held on October 21, 2017. We are so grateful to Laurie Heyman and Selina Lai for their help with programming and event logistics; David Garden for recording the conference video; and Ellen Rennell for editing the videos. A… Read More »