Not Your Mother’s Yarn

FSH member Kathy Senecal will be fundraising for the FSH Society in the coming months at four different craft fairs through her business, Not Your Mother’s Yarn.  100% of the net proceeds will be donated to the FSH Society. Kathy offers a large selection of hand-spun yarns, as well as hats, snoods, fingerless gloves, and … Read more of “Not Your Mother’s Yarn” »

Gimpy girl goes birding

A 2017 mid-Atlantic, physically accessible birding “Big Year” by DEB CALHOUN, Frederick County, Maryland Midsummer last year, I became determined to fight back against FSH muscular dystrophy. Most of my friends and family know I have FSHD. This isn’t a new diagnosis, and living fully with this disease has kept me determined and also sensitive to the … Read more of “Gimpy girl goes birding” »

“About FSHD” brochure is now available in Chinese!

Thanks to our friend and fellow FSHD advocate in China, Ning Baisheng, our “About FSHD” brochure has been translated and adapted for readers in China. Baisheng says patients in China face the same problems as patients everywhere, as few physicians know about FSH muscular dystrophy. This brochure is a valuable educational tool not just for patients … Read more of ““About FSHD” brochure is now available in Chinese!” »

Relive Team FSHD Cycling’s Race Across America!

Check out this amazing video of Team FSHD Cycling’s epic race this summer. Huge thank you to Emily Pollock for creating this priceless documentary. Warning: Have a box of tissues handy! 

Why I donated tissue

by MAUREEN EYE Centerport, New York In November of 2016, I underwent scapula fusion surgery in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research. The donation itself was relatively simple. The paperwork prior to the surgery was minimal and mainly taken care of by the doctor’s office. The … Read more of “Why I donated tissue” »