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 »
Bay Area Family Day Video and Slides
Here are the slides and videos from the Bay Area Family Day conference, held at the Li Ka Shing Center, Stanford Medical School, on Sunday, April 28, 2019. Click on the titles of the talks to see the slides. Click on “video” to watch the recorded talk. Advances in FSHD treatments Getting ready for FSHD… 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 »