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!

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.

FSH Society has earned Charity Navigator's highest 4-Star Charity Navigator rating for a fourth consecutive year! More

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

For the FSH Society FSHD Patient Brochure, HERE

For the FSH Society's Physical Therapy Brochure, HERE

For the FSH Society's Living with FSHD Series FSHD: A Guide For Schools Brochure, 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

Combined Federal Campaign (CFC). Pledges made by Federal civilian, postal and military donors during the 2012 campaign season (September 1st to December 15th) can support the FSH Society. The FSH Society’s CFC identification number is 10239.

Forms 990 2010, 2009, and 2008 Forms 990 filed with the IRS can be found on Guidestar.Org, 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

MAY 07	High-profile paper on FSHD published in Cell by Drs. Davide Gabellini and Daphne Cabianca in Milan, Italy. There are three distinct messages in the paper: 1. FSH Society funding leads to breakthroughs; 2. Junk DNA may be responsible for FSHD and other examples of faulty gene regulation; and 3. DBE-T may be a valid therapeutic target for FSHD More

MAY 07	FSH Society funding leads to breakthroughs. High-profile paper on FSHD published in Cell. Cabianca et al., A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy More

MAY 07	FSH Society research fellows report in Cell that junk DNA may be responsible for FSHD and other examples of faulty gene regulation More

MAY 07	FSHD researchers report in Cell that DBE-T may be a valid therapeutic target for FSHD More May 7th joint press release from San Raffaele Scientific Institute, Milan, Italy and the Telethon Foundation can be found Here

APR 27	FSH Society Submits FY2013 Written Testimony U.S. Senate Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $12 million annually More / Testimony in PDF

APR 24	Past FSH Society fellows publish research paper “Correlation analysis of clinical parameters with epigenetic modifications in the DUX4 promoter in FSHD” in Epigenetics that proposes a prognostic marker that can be measured in a relatively accessible tissue to help define the level of disease severity in FSHD More

APR 20	FSHD research teams in Seattle, Rochester and Leiden add to the existing FSHD model loss of heterochromatin at D4Z4 and the presence of a specific haplotype on chromosome 4 are necessary but not sufficient for DUX4 expression in PLoS ONE. Choice of transcriptional direction from each D4Z4 unit is an additional requirement for DUX4 production and having FSHD More

APR 17	FSH Society grantees publish new paper "RNA Interference Inhibits DUX4-induced Muscle Toxicity In Vivo: Implications for a Targeted FSHD Therapy" in The American Society of Gene & Cell Therapy providing proof-of-principle for RNAi therapy of FSHD through DUX4 inhibition More

APR 12	FSHD-affected and FSHD-unaffected volunteers needed for research study using (MRI) and magnetic resonance spectroscopy (MRS) imaging in skeletal muscle at KKI, Baltimore, Maryland! Learn more about the study, inclusion criteria and how to get involved HERE

APR 05	Nancy Van Zant informed the board of the FSH Society that she intends to retire from her position of Executive Director in summer 2012. The FSH Society Will be seeking an Executive Director More

MAR 23	Our latest publication from FSH Society’s Living with FSHD Series is now available! For details HERE. To read the “FSHD: A Guide for Schools” on-line PDF

FEB '11	Latest FSH Watch Winter 2012 Edition Newsletter with FSH Society Annual Donor Report 2011 of gifts received January 1, 2011 to December 31, 2011 can be found here! More

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

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

	FSH Society Submits FY2013 Written Testimony U.S. House Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $12 million annually More / Testimony in PDF

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

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

	September 2011 Latest FSH Watch Summer 2011 Research Edition Newsletter can be found here! More

	FSHD is shown to be the most Prevalent Muscular Dystrophy! Consortium of European government and private partners releases November 2011 report showing that Facioscapulohumeral Muscular Dystrophy. More

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

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

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

SEP 15	Third Annual Fulmer Family FSH Society Benefit Dinner Sharon Baptist Church 536 North Ola Road McDonough, Georgia 30252 September 15, 2012 More

SEP 24	A Festive Evening of Music and Song at NYBG New York Botanical Garden Bronx, New York September 24, 2012 6:00 p.m. To RSVP for Event More To Become an Event Underwriter Donate For more information e-mail: fshconcert2012@fshsociety.org

sep 29	Fourth Annual Cape Cod Walk 'n' Roll for FSH Muscular Dystrophy Cape Cod, Massachusetts September 29, 2012

OCT 05	Golf Tournament for FSH Muscular Dystrophy Abilene, Texas October 05, 2012

OCT 07	Third Annual Celebrity Charity Walk 'n' Roll for FSH Muscular Dystrophy Heritage Park Irvine, California October 07, 2012 Event Giving Available! More