At the Muscular Dystrophy Association’s biennial scientific conference, held in Washington, DC, on March 19-22, 2017, researchers from Acceleron Pharma presented a poster about the most prominent symptoms and daily life impact of FSH muscular dystrophy, as reported by patients and caregivers. The report was based on results from a survey developed by Acceleron in… Read More »
FSHD patient survey results presented at MDA Conference
The FSH Society Spring Watch is out!
The FSH Society is pleased to announce their Watch Newsletter for Spring 2017. Featured in the Watch are articles about Highlights from the FSH Society’s 2016 International Research Conference (page 1) Young Hollywood comes out in support of the Los Angeles Ghostly Gala (cover story) New FSHD family cell lines being released for research after 30… Read More »
Mom and Daughter with FSHD featured in Muscular Dystrophy News!
Two of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD. Diane is Lexi’s mother and the two live in Massachusetts. Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness:… Read More »
FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis
Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis. To watch the broadcast video clip, click here. After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life…. Read More »
2017 RAAM Kickoff Dinner
Race Across America fundraising for FSH muscular dystrophy June 15, 2017 from 4:00 – 7:00 pm Urge Gastropub & Whiskey Bank 2002 S Coast Hwy, Oceanside, CA 92054 Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download… Read More »