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… Read More »
Rochester FSHD Family Day videos
My journey from powerless to powerful
by Dave Lukas, Lake In the Hills, Illinois Three years ago, my life was changed forever. Three years ago, I walked out of a doctor’s office, got in my car… Read More »
Clinical trial readiness study calls for volunteers
by Jim Albert, Eldersburg, MD The FSHD Clinical Trial Research Network (CTRN) is currently recruiting up to 160 FSHD patients across the seven CTRN sites to participate in a study called… 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… Read More »
A new tool for measuring disease burden in FSH muscular dystrophy
by Amanda Hill, Denver, Colorado FSHD clinical researchers recently published what may soon become a standard battery of assessments for use in clinical trials, an exciting and essential milestone for… Read More »