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… Read More »
Why I donated tissue
Our San Francisco Concert and Patient Meeting is right around the corner!
Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson. Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on… Read More »
FSH Society Talk Radio on mindfulness in coping with FSHD
LISTEN LIVE HERE Wednesday, June 28, 2017, 9:00 pm EST / 8:00 pm CST Our guest is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a… Read More »
Team FSHD Cycling crosses the finish line!
And here they are, our champions! Team FSHD Cycling at the Race Across America finish line in Annapolis last night! We couldn’t be more proud, and humbled, by this… Read More »
New documentary tells one family’s story about FSH muscular dystrophy
FSH Society ambassador Lexi Pappas has just completed her first film documentary, based on her family’s multigenerational experience living with facioscapulohumeral muscular dystrophy. We learn how FSHD affects individual members of her… Read More »