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!

Help Solve and Treat 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 fifth consecutive year! More

FSH Watch Newsletters 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 2013! 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 2011, 2010, 2009, and 2008 Forms 990 filed with the IRS can be found on Guidestar.Org, clicK HERE

FSH Society 2011 Audited Financial Statements 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

apr 08	FSH Society has earned Charity Navigator's highest 4-Star Charity Navigator rating for a fifth consecutive year! FSH Society joins a select group of the less than four percent of charities that have achieved five consecutive four-star evaluations Read online press release at PRWeb. Read More

APR 04	Research project initiated in 2003 under a FSH Society Marjorie Bronfman Fellowship Grant yields a new transgenic mouse model with Human DUX4 D4Z4 advancing clinical trials readiness efforts and our understanding of FSHD Press Release at PRWeb. Publication online at PLOS Genetics

MAR 15	FSH Society Submits FY2014 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

MAR 11	FSHD patients and families are invited to attend the Stanford Hospital & Clinic’s Neuromuscular Program’s open house, taking place April 10, from 4:30 PM to 7:00 PM in the 2nd floor conference room of the Hoover Pavilion at 211 Quarry Road, Palo Alto, California More Flyer

MAR 07	Latest FSH Watch Winter 2013 with Annual Donor Report Edition Newsletter can be found here! More March 18, 2013 -- We have posted a corrected version of the 2013 Winter edition of FSH Watch. We inadvertently omitted the name of Judith and Kenneth Seslowe, M.D., from the Annual Donor Report. As many of you know, Judy is a member of the Society's Board of Directors and the driving force behind our hugely successful New York benefit concert. We owe the Seslowes our sincere apologies as well as profound gratitude.

FEB 11	The Centers for Disease Control Spotlights FSH Muscular Dystrophy More and see also CDC.gov

FEB 04	The FSH Society and the FSHD Canada Foundation announce first joint effort to fund FSHD research using human induced pluripotent stem cell (hiPSC) technology that could lead to new insight into the FSHD disease process while providing critically important tools for developing new therapies More

JAN 29	FSH Society Scientific Advisory Board (SAB) recommends and Board of Directors funds $393,489 for five (5) new research awards for the Aggust 2012 grant cycle! PDF More

JAN 28	The 2012 End-of-year Challenge of $225,000 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 to over $1,422,000 for 2012. Think of the research that can be funded…. Thank you. Thank you.

JAN 24	The FSH Society Answers Questions About the New Gene SMCHD1 for FSH Muscular Dystrophy More

DEC 10	GlaxoSmithKline PLC (GSK) announces partnership to develop therapeutics to treat FSHD. The goal of the new agreement is to develop a small-molecule-based medicine to potentially reverse FSHD More

DEC 01	Year-End Challenge to Fund the Treatment for FSHD! A group of long-time supporters have come forward to challenge the Society’s members and friends to make gifts to Fund the Treatment for FSHD. These generous donors will match your gift dollar for dollar, up to a total of $255,000, if you make your gift by December 31, 2012 More

NOV 26	Canadian Foundation Launched! Great news for Canadians who wish to support FSHD research! Canadians can now donate funds directly towards FSHD research — and receive a tax deduction. The FSHD Canada Foundation and the FSH Society are pleased to work together to direct funding to the highest quality, most impactful research on FSHD More

NOV 11	Exciting news to report! A watershed paper was published online in Nature Genetics identifying the mutation in a gene causing the non-chromosome-4-linked FSHD disease called FSHD1B or FSHD2 More. Read abstract and paper online at Nature Genetics HERE

NOV 06	2012 Facioscapulohumeral Muscular Dystrophy (FSHD) International Research Consortium Meeting for FSHD research professionals held in San Francisco was a success! Progress in FSHD Muscular Dystrophy Research Hailed at International Meeting PRWeb Press Release / More / Program & Abstracts

SEP 24	A Festive Evening of Song, at the New York Botanical Garden, Monday, September 24, raised nearly $250,000 for FSHD research More. Many thanks to Steven Blier, Kelli O’Hara, Judy Seslowe, Beth Johnston, Bob and Abigail Kirsch, Sheila Cohen, underwriters, many family members and friends, and everyone who contributed. See Steven Blier and Kelli O’Hara talk about renewed hope through FSH Society research. Video Written, Produced and Directed by Susan Egert-Milling, Bill Milling and American Movie Company, Shot by Hernan Toro, and Edited by Arie Ohayon More.

AUG 16	June Kinoshita joins the FSH Society as Executive Director More

jul 13	Important paper on FSHD published in Human Molecular Genetics by scientists at the BBRI NIH NICHD Sen. Paul Wellstone MDCRC for FSHD. The distinct message in the paper is that DUX4-fl expression is necessary but not sufficient by itself for FSHD More. Read abstract and paper online at Human Molecular Genetics HERE

JUL 12	Get involved with research! 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 read HERE. For JHMIRB web summary More. For JHMIRB Study Consent Form More. For JHMIRB eFormA detailing process More. For JHMSOM IRB click HERE.

JUN 30	The Society’s 2012 International Patient and Researcher Network Meeting held Saturday, June 30 and Sunday July 1, in Atlanta, Georgia was a resounding success. Final program HERE. Thank you to all attendees and presenters for making this the best conference yet! Listen to and view all of the presentations from Day 1 HERE and Day 2 HERE

jun 20	Volunteers within driving distance of University of California, Davis needed for research study on State-of-the-art clinical endpoints. Learn more about the study, inclusion criteria and how to get involved read HERE. For UC Davis Study Consent Form read More.

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 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

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

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 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

	FSH Society Submits FY2014 Written Testimony U.S. Senate Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $12 million annually. Slightly update since March U.S. House testimony More / Testimony in PDF

	FSH Society Submits FY2014 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

	Get involved with research! 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 read HERE. For JHMIRB web summary More. For JHMIRB Study Consent Form More. For JHMIRB eFormA detailing process More. For JHMSOM IRB click HERE.

	Volunteers within driving distance of University of California, Davis needed for research study conducted by the Department of Physical Medicine and Rehabilitation on "State-of-the Art Clinical Endpoints versus Person-Reported Outcomes in Individuals with Neuromuscular Disease: Reliability, Validity and Responsiveness to Change." Learn more about the study, inclusion criteria and how to get involved read HERE. For UC Davis Study Consent Form More.

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

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

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

MAY 11	Baltimore-area meeting for FSHD patients and families. FSH Society Baltimore-Area Meeting For FSHD Patients And Families, Saturday, May 11, 2013, 1:00-4:00 P.M. EDT. Kennedy Krieger Outpatient Center, 801 North Broadway, Baltimore, Maryland more information More View the meeting live in Livestream on Saturday, May 11, 2013, approximately 12:30-2:45 PM Eastern Daylight Time LiveStream Connect Info

JUL 01	The Society’s 2012 International Patient and Researcher Network Meeting held Saturday, June 30 and Sunday July 1, in Atlanta, Georgia was a resounding success. Final program HERE. Thank you to all attendees and presenters for making this the best conference yet!

APR 25	Maddie Hooge Fundraiser in Vancouver (FSHD Canada)

APR 27	15th Annual "Friends Supporting Hope" Fundraiser for FSH Muscular Dystrophy Florian Hall Dorchester, Massachusetts Saturday, April 27, 2013 7:00 p.m. Purchase Tickets and Make a Donation More For more information, please visit Ellen and Chris Stenmon's website More

jul 05	Lakeside Celebration and Fundraiser for the FSH Society The Mackay Residence Hickory Corners, Michigan 5:00 p.m. to 10:00 p.m. Live band, dinner, wine and auction under a tent on the shores of gorgeous Gull Lake Purchase Tickets and Make a Donation More

SEP 07	Fourth Annual Fulmer Family FSH Society Benefit Dinner Hawaiian theme and food! Sharon Baptist Church 536 North Ola Road McDonough, Georgia 30252 5 p.m. to 8 p.m. Purchase Tickets and Make a Donation More

sep 23	Swing for the Cure Golf Tournament (FSHD Canada) Pipers Heath Golf Course Milton, Ontario Canada Labour Day Monday, September 23, 2013 Purchase a round of golf or become a sponsor of Swing for the Cure Golf Tournament More For more information on this fundraiser or event please contact FSH Society, Executive Director, June Kinoshita by e-mail at: june.kinoshita@fshsociety.org

SEP 30	A Festive Evening of Music and Song at NYBG New York Botanical Garden Bronx, New York 6:00 p.m. To RSVP for Event To Become an Event Underwriter For more information e-mail: fshconcert2013@fshsociety.org

OCT 04	Golf Tournament for FSH Muscular Dystrophy Abilene Country Club Abilene, Texas

OCT 5-6	Fourth Annual Celebrity Charity Walk 'n' Roll for FSH Muscular Dystrophy Heritage Park Irvine, California Event Giving Available! More

OCT 19	Fifth Annual Cape Cod Walk 'n' Roll for FSH Muscular Dystrophy Cape Cod, Massachusetts More

DEC '12	Annual holiday letter Peer-to-peer fundraising can magnify your impact SEVEN-FOLD!! Engage your family, friends, colleagues and business network in becoming supporters for the FSH Society by sending out a holiday (or birthday) letter or email, or by setting up a Razoo page. Set a goal of how much you want to raise, explain how your friends' gifts will make a difference, and inform them their gifts will be matched dollar-for-dollar if they act before December 31. We can help you by providing donation envelopes, "Who We Are" flyer and Year-end Challenge letter. If you prefer to conduct your campaign electronically, you may set up your personal donation page on Razoo and enhance it with your own YouTube video message, or by embedding our YouTube public service announcement. Please contact june.kinoshita@fshsociety.org if you have any questions.