What is the FSHD Society?
The world’s largest grassroots network of individuals with FSH muscular dystrophy, their families, and research activists, the FSHD Society was founded in 1991 by two patients, Daniel Perez and Steve Jacobsen. The Society helps people through education and outreach; funds scientific and medical research; and advocates for increased government and industry investment in FSHD.
We have transformed the landscape
Patients once had no place to turn for help. There was virtually no research on FSHD. The FSHD Society raised funds that launched many areas of FSHD research. We helped to write the MD-CARE Act (2001), which led to the creation of the NIH-funded Wellstone Centers for FSHD research. The Society has invested over $10 million in research, contributing to the discovery of the genetic cause of FSHD and igniting interest by more than a dozen biotech companies in developing treatments.
We are taking action to:
- Solve the biological disease process.
- Build critical infrastructure to accelerate research.
- Improve patient care nationwide.
- Speed up development of treatments.
To respond to these challenges, we have launched our FSHD Therapeutics initiative to accelerate the development of treatments and a cure to our families by the year 2025.
Learn More About Us
FSHD Society – the First 25 Years
FSH Society Founded
First FSH Society Scientific Advisory Board formed.
Study of families reveals evidence of genetic heterogeneity.
First issue of FSH Watch published.
Daniel Perez gives first testimony before the U.S. House of Representatives.
First FSHD patient brochure published.
First genetic test for FSHD on limited research basis.
First International Scientific Symposium on FSHD.
First FSH Society patient conference, in San Diego, with 80 members.
David E. Houseman becomes Chair of Scientific Advisory Board.
First major clinical trial for FSHD (albuterol).*
NIH makes first directed request for grants on FSHD as a result of Society's advocacy.
First FSH Society grants awarded
- Marjorie Bronfman Postdoctoral Research Fellowship to Silvere M. van der Maarel.
- Marjorie Bronfman Postdoctoral Research Fellowship awarded to Sara T. Winokur.
- Delta Railroad Research fellowship awarded to Alexandra Belayew, PhD, for seminal work leading to discovery of DUX4.
Daniel Perez becomes Society's first paid employee.
FSH Society writes MD-CARE Act to include all muscular dystriphies; enacted into law by President George W. Bush.
- NIH Announces series of initiatives to accelerate FSHD research.
- MD_CARE Act establishes multiple Wellstone Centers.
- Fedral Muscular Dystrophy Coordinating Committee created.
FSHD is associated with the chromosome 4qA allele.
Daniel Perez works with Human Genome Project to finish sequencing "junk" DNA at 4q35.1-4q35.2.
First FSH prenatal genetic testing made available in U.S.
Clinical trail of myostatin inhibitor in FSHD patients.
First brochure on Physical Therapy & FSHD.
Genetic mechanism of FSHD Type 1 is published in the journal Science.
International team finds gene for FSHD Type 2.
FSHD Champions international alliance is established.
Gene for FSHD2 reported to modify the severity of symptoms in FSHD1.
First high-throughput screen for drugs targeting the genetic mechanism for FSHD1.
Facio Therapies biotech founded.*
CRISPR/dCas9 inactivates DUX4 expression in human FSHD muscle cells.
FSH Society total lifetime grants awarded exceed $6.85 million.
aTyr Pharma launches Phase 1 clinical trial of ResolairsTM.*
Acceleron Pharma announces clinical trial of ACE-083.*
Fulcrum biotech founded; FSHD among initial targets. *
First "Word FSHD DayTM" observed on June 20.