By Mia Archuleta, Granbury, Texas I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my… Read More »
Reflecting on FSHDselfies
FSH Watch Winter 2015 issue is out
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… Read More »
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… 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… 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… Read More »