World FSHD Day was a HUGE Success! Thank you to all of you who hosted events and participated! Here are a few highlights: The Tampa Chapter and George Pollock Raced Across America with Team FSHD Skyland Trail The Atlanta Chapter lit up the King & Queen Buildings The New England Chapter lit up the Zakim Bridge The Arizona and Utah Chapters had… Read More »
World FSHD Day 2019 highlights
Strength in Determination
Editor’s note: We are proud to share, with the author’s permission, an essay by eighth grader Sam Ray of Willcox, Arizona, who was a winner this year of the annual, national essay contest, “Breaking Barriers: In Sports, In Life.” The contest was created by Scholastic and Major Baseball League in honor of Jackie Robinson, to… Read More »
Many “Firsts” for the 26th Annual FSHD International Research Congress
The world’s premier conference on the rare muscle disease sets attendance records as it convenes for the first time in Europe The FSH Society announced the opening today of its 26th annual International Research Congress (IRC) in Marseille, France. The conference is widely seen as the premier global platform for the discussion and dissemination of… Read More »
Stance-control brace webinar [VIDEO]
Here is the recording of our June 8th webinar with Abbey Downing, a certified prosthetist/orthotist from the Hanger Clinic in Wethersfield, CT. Ms. Downing has worked with Kathy Senecal, a client with FSHD, on fitting her with a brace. She provides an excellent explanation of the mechanics of this type of brace and the types… Read More »
TikTok to participate in World FSHD Day
TikTok, the video-sharing app formerly known as musical.ly, is the world’s fastest growing social networking platform. This year, TikTok is participating in World FSHD Day on June 20th. The relationship was cultivated by our friends at FSHD China. TikTok will be reaching out to Chinese pop stars and other celebrities, who will share a 15-second… Read More »