clasping hands photo

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

Join us on July 24th at "Songs in the Key of Steven Blier" featuring opera superstar Frederica Von Stade at Yoshi's San Francisco. Sponsor opportunities and tickets HERE.

Help Solve and Treat FSHD!


Join with thousands of patients, family members and friends in supporting research on facioscapulohumeral muscular dystrophy. The FSH Society helped build a thriving scientific enterprise, and today we stand on the brink of discovering the first treatments. With big opportunities come big challenges, to raise awareness, rally patients and families to volunteer for research, and empower scientists to stake their careers on finding a cure.

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 2014! 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 2014 campaign season (September 1st to December 15th) can support the FSH Society. The FSH Society’s CFC identification number is 10239.


FSH Society 2013 Audited Financial Statements HERE

FSH Society 2012 IRS Form 990 HERE

Forms 990 2012, 2011, 2010, 2009, and 2008 Forms 990 filed with the IRS can also 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

AUG
16

2014 FSHD Connect
The FSH Society's Biennial International Network Meeting for FSHD Patients, Clinicians and Researchers


Saturday-Sunday, August 16-17, 2014
The Westin Boston Waterfront, 425 Summer Street, Boston MA 02210

The 2014 FSHD Connect Meeting will bring together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. This year's meeting will feature talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops. Popular breakout sessions include topics that members have requested, including teenagers and young adults, caregiving, traveling and sports.

View the tentative Program and Agenda HERE
See faculty and breakout speakers HERE

Info and Online meeting registration HERE
Mail-in / fax meeting registration HERE


jun
21
FSH Society’s scientific advisory board member Dr. George W.A.M Padberg's 1982 doctoral thesis – the gold standard and landmark study on FSHD is now open access at Leiden University!  Still one of the best and most elaborate clinical descriptions of FSHD, despite being more than 30 years old. Access HERE 

JUN
10

Two recent reviews in Skeletal Muscle show the state of where the field is, while also pointing to the various relevant disagreements that still exist. The Society has done an excellent job of layering in foundation and promoting discovery and this is reflected in these two reviews. These reviews attest to the effectiveness of research efforts by the FSH Society.

1.) Tawil, van der Maarel and Tapscott
Facioscapulohumeral dystrophy: the path to consensus on pathophysiology
Tawil R, van der Maarel SM and Tapscott SJSkeletal Muscle 2014, 4:12 (10 June 2014)
available via Open Access HERE

2.) Neguembor MV, Jothi M and Gabellini D
Long noncoding RNAs, emerging players in muscle differentiation and disease
Neguembor MV, Jothi M and Gabellini DSkeletal Muscle 2014, 4:8 (31 March 2014)
available via Open Access HERE

MAY
26

Latest FSH Watch Spring 2014 Newsletter can be found here! Much exciting news and strong progress to report on all fronts! More See current and all past newsletters Here


MAY
23
FSH Society Submits FY2015 Written Testimony U.S. Senate Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $18 million annually More / Testimony in PDF

APR
27
FSH Society Announces Honorary Board Committed to Raising FSHD Awareness. The board of fourteen distinguished celebrities will work with the FSH Society to raise visibility of FSHD, a disease that remains relatively unknown but which is at a critical tipping point in its progress toward a cure .... PRWeb / More

MAR
28
FSH Society Submits FY2015 Written Testimony U.S. House Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $18 million annually More / Testimony in PDF

MAR
24
A Call to Action to members to advocate for the MD Care Act reauthorization! The FSH Society is calling on it members and friends to call or write More

feb
06

FSH Society Scientific Advisory Board (SAB) recommends and Board of Directors funds $609,565 for six (6) new research awards for the Aggust 2013 grant cycle! $242,500 of the total was awarded to new Genomic Engineering technology projects PDF More


FEB
03
FSH Society Makes Notable Progress in Funding, Research and Patient Engagement in 2013 More

DEC
31

Adveq makes gift in honor of a FSHD family. Over the holidays, we received a generous $10,000 donation from Adveq, a leading asset manager investing in private equity and real asset funds globally. More


OCT
21

The 2013 FSH Society FSHD International Research Consortium workshop was held on Monday & Tuesday, October 21-22, 2013, at the Massachusetts Institute of Technology, in Cambridge, Massachusetts Program and Abstracts More


AUG
06
FSH Sociiety awards a $48,909 research grant to Dr. Jeffrey Statland, University of Rochester, Rochester, New York, Fellow and Senior Instructor in the Department of Neurology, so that he can evaluate electrical impedance myography (EIM) as a tool for quantifying the muscle structure of FSHD patients. More PRWeb

JUN
20
FSH Society Scientific Advisory Board (SAB) recommends and Board of Directors funds $88,909 for two (2) new research awards for the February 2013 grant cycle! PDF More

MAY
15
FSH Society for Muscular Dystrophy is One of “Ten Charities Worth Watching” PRWeb. Story at Charity Navigator

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

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
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


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


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.


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


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
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


#FSHDselfies Shoot a Selfie, Raise Awareness

This week we are launching a major national social media campaign to raise awareness about FSHD and actor Max Adler of "Glee" and ABC Family's "Switched at Birth" will be kicking it off with us! Max's mother and grandmother were affected by the disease and he has been one of the most vocal celebrity advocates for the disease.

The ever popular social meme of the selfie is considered rather narcissistic, but we're taking the term and making it into a positive force to raise awareness about FSHD. As you know, many people affected by FSHD are unable to smile, and that's where the impetus for the campaign started.

We want to share selfies of those affected by FSHD smiling and not smiling (or smiling on the inside) and give others a chance to smile for us and share these faces — the whole array of them — on Facebook, Twitter and Instagram.

Please help us spread awareness, starting today on July 7. To learn how, click HERE.


Two recent reviews in Skeletal Muscle show the state of where the field is, while also pointing to the various relevant disagreements that still exist. The Society has done an excellent job of layering in foundation and promoting discovery and this is reflected in these two reviews. These reviews attest to the effectiveness of research efforts by the FSH Society.

1.) Tawil, van der Maarel and Tapscott
Facioscapulohumeral dystrophy: the path to consensus on pathophysiology
Tawil R, van der Maarel SM and Tapscott SJSkeletal Muscle 2014, 4:12 (10 June 2014)
available via Open Access HERE

2.) Neguembor MV, Jothi M and Gabellini D
Long noncoding RNAs, emerging players in muscle differentiation and disease
Neguembor MV, Jothi M and Gabellini DSkeletal Muscle 2014, 4:8 (31 March 2014)
available via Open Access HERE

FSH Society’s scientific advisory board member Dr. George W.A.M Padberg's 1982 doctoral thesis – the gold standard and landmark study on FSHD is now open access at Leiden University!  Still one of the best and most elaborate clinical descriptions of FSHD, despite being more than 30 years old. Access HERE

FSH Society Submits FY2015 Written Testimony U.S. House Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $18 million annually More / Testimony in PDF

The 2013 FSH Society FSHD International Research Consortium workshop was held on Monday & Tuesday, October 21-22, 2013, at the Massachusetts Institute of Technology, in Cambridge, Massachusetts Program and Abstracts 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

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.

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 University of Massachusetss Medical School UMMS/BBRI Sen. Wellstone MD CRC on Biomarkers for Therapy of FSHD web site More

AUG
16

2014 FSHD Connect
The FSH Society's Biennial International Network Meeting for FSHD Patients, Clinicians and Researchers


Saturday-Sunday, August 16-17, 2014
The Westin Boston Waterfront, 425 Summer Street, Boston MA 02210

The 2014 FSHD Connect Meeting will bring together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. This year's meeting will feature talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops. Popular breakout sessions include topics that members have requested, including teenagers and young adults, caregiving, traveling and sports.

View the tentative Program and Agenda HERE
See faculty and breakout speakers HERE
Info and Online meeting registration HERE
Mail-in / fax meeting registration HERE


feb
01

The FSH Society and Kennedy Krieger Institute will hold their fifth Mid-Atlantic support group meeting on Saturday, February 1, 2014, 12:00 p.m. to 3:00 p.m. at the KKI Out-patient Center at 801 North Broadway, Room 202, Baltimore, MD.  The featured speaker is Dr. Gabsang Lee of Johns Hopkins University, who will be speaking about his research on human pluripotent stem cells for FSHD.

Attended by FSHD patients and their families, the meeting will also be broadcasted live via video streaming to the FSHD community across the country and the world.  The KKI/FSHSociety support group meeting is a forum for FSHD patients and families to hear experts talk on topics of interest to them.  If you are interested to know more about the support group meetings, please feel free to contact Melanie Branagan at (443) 923-9519, branagan@kennedykrieger.org. Meeting will be broadcast live via video streaming at http://www.ustream.tv/channel/fshsociety


NOV
16
University of Massachusetts Medical School (UMMS) Wellstone Center for FSH Muscular Dystrophy Research Invites Patients, Families and Supporters to Meet with FSHD Researchers, Clinicians and Biotech Partners to its

Celebration of a Clinic and Research Center
Serving FSHD Patients in the Northeast


Saturday, November 16, 2013
11:00 AM – 5:00 PM
Albert Sherman Center - 1st Floor
University of Massachusetts Medical School
55 Lake Avenue North
Worcester, Massachusetts

To RSVP HERE
For for more information about the Celebration HERE

JUL
05

LAKE PARTY
Dinner and Auction for FSHD Research
Net proceeds to benefit FSH Society

Saturday, July 5, 2014
5:00 p.m. to 10:00 p.m.

Hosted by the MacKay family
Hickory Corners, Michigan

To RSVP HERE
For for more information about the dinner and to purchase tickets HERE


JUL
13

Phil's Jam for FSHD Wild Wing Café, 545 Cool Springs Blvd., Franklin, Tennessee

Wednesday, July 13, 2014.

A night of music to benefit the FSH Society.
Net proceeds to benefit FSH Society research & education

For for more information about the evening and benefit HERE


JUL
24
SONGS IN THE KEY OF STEVEN BLIER
Featuring Frederica von Stade
Net proceeds to benefit FSH Society

Thursday, July 24, 2014
6:00pm: Reception, Silent and Live Auction
8:00pm: Concert

Yoshi's Jazz Club and Japanese Restaurant
1330 Filmore Street, San Francisco

For sponsor opportunities and tickets reserve HERE

SEP
29

A FESTIVE EVENING OF SONG
Net proceeds to benefit the FSH Society and FSH Muscular Dystrophy Research 
featuring: Steven Blier and two-time Grammy winner Sylvia McNair

September 29, 2014 - 6PM
Tappan Hill Mansion in Tarrytown, NY

To RSVP HERE
For for more information about the concert and to purchase tickets HERE


OCT
12

CELEBRITY WALK 'N' ROLL for FSH Muscular Dystrophy.
Net proceeds to benefit FSH Society research & education

Sunday, October 12, 2014
10 am — 2pm

Heritage Park
14301 Yale Avenue
Irvine, California 92604

To RSVP HERE
For for more information about the walk and celebrities and to sign-up and purchase tickets HERE


DEC
'14

Annual holiday letter

Peer-to-peer fundraising can magnify your impact SEVEN-FOLD!! Engage your family, friends, colleagues and business network in becoming supporters and fundraisers 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. We can help you by providing donation envelopes, "Who We Are" flyer and Year-end holiday letter template. Sharing our public service video is also a powerful way to convey our message. 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.


FSH Society, Inc. • 450 Bedford Street • Lexington, MA 02420 • Tel: 781 301-6060 • Fax: 781 862-1116