Even without treatment, a diagnosis is therapeutic By Asifa Lalji (from her article in the FSH Watch Newsletter Spring/Summer 2015) When the Canadian provincial government of British Columbia decided it would not provide national health insurance coverage for genetic testing of FSHD, it triggered this response from a constituent. She raises important arguments that could… Read More »
Why seek genetic testing for Facioscapulohumeral muscular dystrophy?
Doug & Gracie NYC to DC needs your support!
This September 6, Doug Craig, a retired scientist who has lived with FSHD since his teenage years, will be embarking on a 290-mile journey from New York City’s Columbus Circle to the steps of the U.S. Capitol in Washington DC riding on his mobility scooter. Accompanying him will be Gracie, a Bernese mountain dog adopted… Read More »
Report from Sacramento
By Bill Lewis III, MD A new support group met for the first time in Sacramento, CA on August 19th at a centrally located restaurant. We had 10 attendees from the larger Sacramento area. About half the attendees were affected by FSHD and the other half were family members. Ages ranged from twenties to retired. The… Read More »
2015 Spring/Summer issue of FSH Watch is out!
The latest issue of our FSH Watch newsletter has just come out. You can download it here. Highlights include: The first evidence-based FSHD care guideline has been published. What is it? How does this empower the patient? (Page 1). #FSHDStronger, our new awareness campaign (Page 1). The decision to stop working: what you need to know. (Page… Read More »
Become involved with our FSHD Be Strong Campaign!
Want to see a shirt that will knock your socks off? In addition to style, for every shirt or sweatshirt sold, 100% of the profits goes back to the FSH Society to support research and education in order to treat and cure patients with FSHD. See the shirt now! [spacer height=”20px”]