by Haviva Ner-David, Kibbutz Hannaton, Israel It was a chance meeting in the valley that divides my Galilean kibbutz Hannaton from the Bedouin village of Bir al Maksur that planted the seed for the storyline of my debut novel, Hope Valley. I was out walking my dog when I saw Hussein, a shepherd who frequents… Read More »
Partners in Pain, Harbingers of Hope
Notes on spinal and scapular surgery
Excessive curvature of the lower spine, a condition called hyperlordosis, can be a particularly painful and troublesome symptom of FSH muscular dystrophy. We are often asked whether abdominal braces or surgery can help. To answer this question, Dr. Ray Huml has kindly given us permission to share an excerpt by Drs. R.K. Lark and E.W…. Read More »
Hot off the press – FSHD Advocate
Our new issue of the FSHD Advocate, the first of 2021, is now available online. For those of you who receive our flagship magazine by the postal service, it will be arriving over coming weeks. As the cover and stories inside emphasize, the FSHD Society’s most important role in working toward a treatment is in… Read More »
“Our stories need to be shared”
An interview with Tim Hollenbeck, FSHD Radio host On the second Tuesday of every month, at 8 p.m. CT, Tim Hollenbeck fires up a live video stream on the FSHD Society’s YouTube channel to chat with a parade of interview guests, share news, and offer words of encouragement in his calm and cheerful baritone. With… Read More »
What a difference 30 years have made
Time flies when you have your nose to the grindstone, working with focus and determination on a lofty goal. It has been an amazing 30 years since Daniel Perez and Steve Jacobsen started the Society. Back then, almost no one was doing research on facioscapulohumeral muscular dystrophy (FSHD). The human genome had not yet been… Read More »