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 Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional… Read More »
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 tireless advocate for the Society as an advisor and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is… Read More »
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 incredible feat of planning, grit, athleticism, and heart. The team traversed 3,143.9 miles in eight days, braving blistering desert heat and thunderstorms. On behalf of the… Read More »
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 family in different ways. The documentary is a powerful, personal “coming out story” about Lexi’s courageous decision to open up about her condition and why it is… Read More »
Thank you to Missy Cassidy for submitting the request to the Governor’s office! Next year, let’s go for proclamations in all 50 states!