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We are the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. The FSH Society harnesses the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected. We are a cause without borders.

Please use this site to learn more about FSHD, to follow research advances, and to become a member of the FSH Society!

Please Contact Us to Get Involved or for Answers to Questions You Have
Call, E-mail or Write us! Please click HERE for details and suppprt!

Please Contribute or Make a Gift to Help Us Continue Our Work!
Please click HERE for details on how to make a contribution or gift

BREAKING NEWS

April 1, 2009 --FSH Society Initiated Research Leads to Publication of Paper in Proceedings of the National Academy of Sciences – the first on FSHD miRNA. Please click HERE for details

March 28, 2009 --FSH Society Initiated Sam and Mary Roberts Nutrition Research Describes a New MRI/MRS Imaging Method in Journal "Neuromuscular Disorders" to Provide Biomarkers for Clinical Trials and To Evaluate Muscle Damage in FSHD Please click HERE for details

January 30, 2009 --European Epidemiology Report Shows Facioscapulohumeral Muscular Dystrophy FSHD is the most Prevalent Muscular Dystrophy. Please click HERE for details

For a copy of the FSH Society FSHD Patient Brochure, click HERE
For our new FSHD and Physical Therapy brochure, click HERE
Meet others with FSHD online at our Yahoo! Groups and Facebook forums, click HERE

• FSH Society is Awarded $130,000 Marjorie Bronfman Grant for FSHD Research for 2009! More
• Spring 2009 FSH Watch Newsletter More
• Volunteers Needed! Johns Hopkins School of Medicine Recruiting Volunteers with FSHD for Clinical Research More
• FSH Society Receives 2009 Delta Railroad Construction Research Fellowship Grant for $35,000! More
• FSH Society Submits FY2010 Written Testimony U.S. House Appropriations for NIH Research on FSHD May 1, 2009 More
• FSH Society Initiated Research Under FSH Society Landsman Charitable Trust Fellowship creates animal models showing that FRG1 gene is associated with vascular and retinal abnormalities in FSHD More
• U.S. NIH funds New $9 Million BBRI/Harvard Senator Paul Wellstone Muscular Dystrophy Cooperative Research Center on Biomarkers for Therapy of FSHD More