Welcome to the FSH Society

Glad you found us! Come in.

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!

To Help Solve FSHD!

The 2011 End-of-Year Challenge of $217,000 from major donors has been exceeded! You have helped the FSH Society have the most successful fundraising year ever, with your personal gifts, your friends and family’s gifts, together contributing over $1,000,000. Think of the research that can be funded …. We will report the final numbers later this month. Thank you. Thank you. Thank you.

Get Involved! Have Questions? Call, E-mail, or Write Us!
Click HERE for details and support!

Support Our Work, Make a Difference!
Click HERE to make a contribution.

Latest FSH Watch Annual Research Newsletter can be found here! More

For the FSH Society FSHD Patient Brochure, click HERE

For the FSH Society's Physical Therapy Brochure, click HERE

Consider the gift of stock in 2012! It may now be a better way for you to support the FSH Society. More

Newly Diagnosed? Want to Talk to Someone Who Understands?
Talk to one of our Peer-to-Peer Team members.

Meet others with FSHD online at our Facebook and Yahoo! Groups forums, click HERE

Above left: A microscope photo of a myoblast cell that will evolve into a skeletal muscle cell and muscle fiber.

Above right: A common first sign of FSHD, asymptomatic scapular fixator causing scapular winging and difficulty reaching above the shoulder level.

News & Events

jun-jul '12	Registration now open! General info now available HERE. The Society’s 2012 International Patient and Researcher Network Meeting will be held Saturday, June 30 and Sunday July 1, at the Atlanta Marriott Marquis, 265 Peachtree Center Avenue NE, in Atlanta, Georgia 30303. Tentative program HERE. Meeting Registration Form PDF registration Online and hotel reservations info now available HERE

Dec 28	New paper in Developmental Cell identifies a set of genes regulated by DUX4 and suggests possible mechanisms for causing muscle damage that might be targeted for developing therapies "DUX4 Activates Germline Genes, Retroelements, and Immune Mediators: Implications for FSHD" More

DEC 21	FSH Society Scientific Advisory Board (SAB) recommends and Board of Directors funds $123,650 for two new research awards for the August 2011 grant cycle! PDF More

DEC 20	Best practice guidelines on genetic diagnostics of FSHD are now available and published in the journal Neuromuscular Disorders! FSH Society sponsors workshop held June 9, 2010, in Leiden, The Netherlands. More

DEC 03	BBC News Health reports in “Dystrophy patients face 'avoidable' hospital admissions” that UK NHS is wasting up to £31m a year - and putting lives in danger - because it does not give the right care to people with muscle-wasting conditions. FSHD patient Glen Cady, 54, from south London, quoted on complications arising from undetected respiratory insufficiency. More

NOV 30	FSH Society Annual Donor Report 2011 DRAFT of gifts received January 1, 2011 to November 15, 2011 can be found here! More

NOV '11	Latest FSH Watch Fall 2011 Edition Newsletter can be found here! More

NOV 07	2011 Facioscapulohumeral Muscular Dystrophy (FSHD) International Research Consortium Meeting for FSHD research professionals a success! USA More / Program & Abstracts / Consensus Roadmap 2012 Beyond

SEP '11	Latest FSH Watch Summer 2011 Research Edition Newsletter can be found here! More

AUG 21	Breakthrough in FSHD research! Recent developments in RNAi therapeutic studies in FSHD animal models -- possible approaches for treating FSHD with RNAi therapeutics More

JUL 12	NIH NICHD BBRI Sen. Paul Wellstone MD CRC for FSHD announces availability of FSHD and control primary skeletal muscle cell strains and immortalized clonal cell lines for research More

MAY 07	FSH Society has earned Charity Navigator's highest 4-Star Charity Navigator rating for a third consecutive year More

MAY '11	FSHD is shown to be the most Prevalent Muscular Dystrophy! Consortium of European government and private partners releases report showing that Facioscapulohumeral Muscular Dystrophy. More

apr 14	Combined Federal Campaign (CFC). The FSH Society has been approved for the 2011 campaign. Pledges made by Federal civilian, postal and military donors during the campaign season can support the FSH Society. The FSH Society’s CFC identification number is 10239.

FEB 26	FSH Society fellow Dr. Scott Harper Discusses DUX4 as a potential candidate gene for FSHD More

OCT 28	FSH Society helps fund second critical advance in determining the cause of FSHD PLoS Genetics, “Facioscapulohumeral Dystrophy: Incomplete Suppression of a Retrotransposed Gene.” More

h	Marjorie & Gerald Bronfman Foundation renews pledge for FSHD research for 2011 More

	2010 FSHD International Research Consortium Workshop and Research Planning Meeting October 21-22,2010 More

	FSH Society Hails Major Breakthrough in FSH Muscular Dystrophy August 19, 2010 More

	Media Inquiries: Official FSH Society Press Release August 19, 2010 More

	In the NIH News *U.S. DHHS NIH National Institutes of Neurological Disorders and Stroke Statement on the Significance of the Science* Paper** August 19, 2010 More

	New York Times: *'Junk' DNA is Found to Cause Disease* August 19, 2010 More

	Volunteers Needed! FSH Society & Johns Hopkins School of Medicine Recruiting Volunteers with FSHD for Clinical Research More

	2010 International Patient and Researcher Network Meeting More

	FSH Society Submits FY2011 Written Testimony U.S. Senate Appropriations for NIH Research on FSHD More

	U.S. DHHS NIH BBRI Sen. Wellstone MD CRC on Biomarkers for Therapy of FSHD web site More

	Research pioneered by FSH Society leads to new discoveries using non-invasive MRI/MRS imaging of FSHD March 15, 2010 More

JUN-JUL '12	Save the Date! The Society’s 2012 International Patient and Researcher Network Meeting will be held Saturday, June 30 and Sunday July 1, at the Atlanta Marriott Marquis, 265 Peachtree Center Avenue NE, in Atlanta, Georgia 30303. Details to be posted HERE and on our Facebook page in early 2012

Oct 09	Second Annual Southern California Walk 'n' Roll for FSH Muscular Dystrophy Heritage Park Irvine, California October 09, 2011 10:30 a.m. Event Giving Available! More

oct 01	Third Annual Cape Cod Walk 'n' Roll for FSH Muscular Dystrophy Cape Cod, Massachusetts October 1, 2011 Noon Event Giving Available! More

SEP 24	End of Summer Pool Party for FSH Muscular Dystrophy 2000 Monroe Place, NE Atlanta, Georgia 30324 September 24, 2011 4:00 - 7:00 p.m. Hot Sun, Yummy Food, Cocktails and amazing music selected by Atlanta DJ Mike Pope Hosts: Kevin Kirby and friends Roman Greene, representing the FSH Society Event Giving Available! More

APR 16	13th End-of-Tax-Season Fundraiser Florian Hall Dorchester, Massachusetts April 16, 7:00 p.m. Event Giving Available! More

may 19	A Festive Evening of Music and Song at NYBG New York Botanical Garden Bronx, New York May 19, 6:00 p.m. For more information, info@fshsociety.org Event Giving Available! More

JUN 11	Second Annual Fulmer Family FSH Society Benefit Dinner June 11, 6:00 p.m. - 9:00 p.m. 520 Plantation Road McDonough, Georgia 30252 More