Highlights include: Summary of our 2014 FSHD Connect Conference held in Boston. Senator Elizabeth Warren addresses the 2014 FSHD Connect Conference. The essential role epigenetics plays in FSHD. Meet the new FSH Society staff members. The effects of DUX4 expression on muscle cells. The FSH Society’s 2014 International Research Meeting. Antioxidant supplement trial results. New FSHD… Read More »
FSH Watch Winter 2015 issue is out
Remembering Carol Perez
We note the three-year anniversary of Carol Anne Perez’s death at age 76, on February 3, 2012, from respiratory complications of FSHD. Many patients remember Carol as the person on the other end of the phone line when they would call the FSH Society for help and a sympathetic ear. She changed many people’s lives. As… Read More »
University of Kansas seeks volunteers for study
FSHD patients are needed for a research study for: The Relationship of Electrical Impedance Myography to Muscle Structure and Function in Facioscapulohumeral Muscular Dystrophy (FSHD). The study is directed by Jeffrey Statland, MD, of the University of Kansas Medical School. Recent genetic advances in the understanding of FSHD have identified potential future targets for therapy. Consequently,… Read More »
UC Davis study is seeking volunteers
We have been notified that researchers at the UC Davis Medical School are seeking FSHD patients to volunteer for a study. Read here about why participating in research is so important. Your contribution of time and effort is essential to the successful development of treatments for FSHD. Here is information we received from the study coordinator:… Read More »
Our team is growing!
The FSH Society team is expanding, with two new staff members, Diane Burke and Kristin Duquette, taking key positions to enable the organization to meet critical challenges in the coming years. In December 2014, Diane Burke joined as Director of Finance and Administration, stepping into the sizable void left by the retirements of the FSH… Read More »