by Ken Kahtava, FSHD Society This blog post was originally published here on the Project Mercury website. On 11 May in Leiden, NL, the Project Mercury global task force members met for […]
Unleashing the Power of Collaboration: Achieving More for FSHD Together
Physical Health
[…] to find that most doctors, therapists, and fitness trainers have little to no experience with FSHD. That’s just the reality of living with any rare disease, but you have the […]
The Fierce Urgency of Now
[…] summer day in 1963. While King spoke of long-deferred dreams of equality, today in the FSHD community we are faced with our own pivotal moment. Long told that “there’s no […]
Life hacks: Braces for shoulder stabilization
by Peter Blackburn, South Africa FSHD group Ottobock 5055 + 5065 I have two of the Ottobock 5055 Acro Comfort braces. These are joined at the back with velcro tape […]
What FSH Muscular Dystrophy Has Given Me
[…] L. Huml, Raleigh, North Carolina Meredith Huml As a muscular dystrophy sufferer—I was diagnosed with FSHD at Duke University’s Muscular Dystrophy Association (MDA) Center in 2003—the best advice I could […]