Volunteers with FSHD and their family members are needed to provide blood and muscle samples!

Please consider making the valuable gift to research of muscle tissue and blood samples to have advance research efforts on FSHD. Muscle samples and cell lines are in extreme short supply and tissue donors are needed

Johns Hopkins School of Medicine and Kennedy Krieger Institute, as part of the FSHD-Wellstone Muscular Dystrophy Cooperative Research Center, is recruiting volunteers with FSHD and their family members for a clinical research study. Volunteers will be asked to provide blood and muscle samples to be deposited in a research core facility. Although there is no direct benefit to the volunteer, the samples are anticipated to be a great asset in multiple studies within the FSHD-Wellstone and the larger FSHD research community.   If you would like more information about this clinical research study, please contact Dr. Wagner’s Research Study Coordinator, Genila Bibat, at:

Genila Bibat, M.D.
Research Study Coordinator
Center for Genetic Muscle Disorders
Kennedy Krieger Institute
Research Associate
Johns Hopkins School of Medicine - Neurology
707 North Broadway
Baltimore, MD 21205 USA
(443) 923-2778 Office
(443) 923-2779 Fax

Thank you for your consideration and generosity!

For details, IRB approval number and contact, please click HERE