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… Read More »
Mom and Daughter with FSHD featured in Muscular Dystrophy News!
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… Read More »
Accessibility hacks, mobility aids, and tips (Part 1 of 3)
Written by Paul Shay Groton, Massachusetts I am one of the lucky, late-onset FSHers: diagnosed at age 57, now 71. As my progression has been relatively slow over those 14 years,… Read More »
Team FSHD Cycling eyes epic race in June 2017
by June Kinoshita During the month of June of this year, the FSHD community will enjoy the thrill of having one of its own lead an eight-person team in the… Read More »
Upcoming Denver FSHers Meeting: March 25th, 2017
Written by Beth Johnston, Development Officer at the FSH Society When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his… Read More »