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!

Donate today!

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.

Consider the gift of stock in 2010! It may now be a better way for you to support the FSH Society. Remember: Only gifts of stock completed before year’s end can reduce the after-tax cost of your gift.

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

News & Events

FEB 01	2009 Fundraising Challenge for FSHD exceeds goal! Thank you for many generous gifts, EXCEEDING the goal of $131,000 offered by members of the board of directors and other major donors

Oct 07	Key Facts About 2009 H1N1 Flu Vaccine from CDC. Please click here for details

Oct 02	Individuals with FSHD are advised by U.S. CDC to receive the flu shot and NOT the nasal spray flu vaccine! Please click here for details

Sept 23	FSH Society appears on NPR affiliate WCAI Cape Cod and the Islands The Point, hosted by Sean Corcoran, with guests Daniel Perez, Dr. David Housman, and Rich Holmes. Please click here for details, and to listen to the broadcast.

May	Consortium of European government and private partners releases report showing that Facioscapulohumeral Muscular Dystrophy FSHD is the most Prevalent Muscular Dystrophy. Please click here for details

Apr 01	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

Mar 28	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

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

	For a copy of the FSH Society FSHD Patient Brochure, click here

	For our new FSHD and Physical Therapy brochure, click here

	Fall 2009 FSH Watch Newsletter More

	FSHD Patients Should Read: General Information About 2009 H1N1 Vaccines from CDC. More

	FSH Society is Awarded $130,000 Marjorie Bronfman Grant for FSHD Research for 2009! More

	Summer 2009 FSH Watch Newsletter — Annual Research Edition More

	Volunteers Needed! FSH Society & 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. Senate Appropriations for NIH Research on FSHD May 25, 2009 More

	FSH Society Landsman Charitable Trust Fellowship yields FRG1 animal models showing vascular and retinal abnormalities in FSHD More

	U.S. NIH funds $9 Million BBRI/Harvard Senator Paul Wellstone Muscular Dystrophy Cooperative Research Center on Biomarkers for Therapy of FSHD More

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

Jul 30	July 30, 2010 - August 1, 2010 Las Vegas, Nevada The 2010 International Patient & Researcher Network Meeting. More

Nov 01	Hamilton, New Jersey Gathering of FSH Society members and friends. For more info contact the FSH Society office More

2010	Check back for more fundraisers.