Johns Hopkins and the Kennedy Krieger Institute are currently recruiting for two studies! Volunteering for studies like this helps provide researchers with the information they need to provide better treatments,… Read More »
Johns Hopkins Studies
Rare Disease Day at NIH
Frank Kolakowski and Manuel Gomez, FSHD advocates extraordinaire, were on hand to represent FSH muscular dystrophy at this year’s National Institutes of Health Rare Disease Day event. Thank you!
FSH Society’s first Open House!
The FSH Society is looking forward to seeing you! If you live in the New England area or even just happen to be visiting, we’d love to have you… Read More »
Barbara Chin leaves an enduring legacy
We at the FSH Society were deeply moved and inspired to receive yesterday a magnificent bequest of $50,000 from the Barbara A. Chin Trust. This gift will enable the Society… Read More »
Imaging study shows positive effects of exercise and CBT on muscle degeneration
In 2014, a Dutch team reported that aerobic exercise training (AET) and cognitive behavioral therapy (CBT) decreased fatigue and improved the quality of life significantly in FSHD patients. Now, the… Read More »