Hot off the press, our current issue of FSH Watch keeps you up to date on important advances in research and medical care, as well as news about your Society, regional meetings, and upcoming events. Individuals living with FSHD share their thoughts about “coming out” and their responsibilities as advocates and research participants. Highlights include: Human FSHD… Read More »
Belinda Miller is a successful children’s book author who was diagnosed with facioscapulohumeral muscular dystrophy when she was 22 years old. Her diagnosis has not stopped her from doing the one thing she loves most: being an author. Belinda began her career as an elementary school language arts teacher, transitioning later to a career as an… Read More »
(PRWEB) JUNE 14, 2016 The FSH Society, a nonprofit, patient-driven organization that supports research and education for individuals with facioscapulohumeral muscular dystrophy (FSHD) and their families, today announced that it has awarded a $121,000 grant to co-principal investigators Jeffrey Statland, MD of the University of Kansas Medical Center, and Rabi Tawil, MD of the University… Read More »
On June 20, we will celebrate the inaugural World FSHD Day to raise awareness for Facioscapulohumeral muscular dystrophy. Participants from across the globe, including individuals with FSHD, their families and supporters, and advocacy organizations, will come together in various activities to raise awareness for FSHD, one of the most prevalent forms of muscular dystrophy.
This week, Spencer Wyckoff competed on NBC’s “American Ninja Warrior” to raise awareness and funds for the FSH Society. Before taking the course, Spencer and his sister, Carden, described their family’s experience with FSHD. If you missed it, watch a recap of their inspirational story here. Carden created this video to thank their supporters and to… Read More »