The FSH Society advocates on behalf of people with facioscapulohumeral muscular dystrophy. A major focus of the Society’s work has been to advocate for increasing U.S. government (i.e. National Institutes of Health (NIH)) support for research on FSHD. This includes testifying before Congressional committees with jurisdiction to appropriate funds for biomedical research; studying pending legislation; meeting with officials of institutes of NIH with responsibility for the muscular dystrophies; organizing, sponsoring and attending conferences and symposia; and informing other forums such as the National Academy of Science and the Institute of Medicine about increasing the level of support for FSHD research. Efforts have met with success - the FSH Society has achieved unprecedented visibility and attention for FSHD.
Each year the FSH Society submits written and oral congressional testimonies on the status of funding and progress on building FSHD research portfolios as well as on the current scientific opportunities in FSHD basic, translational and clinical research. The Society continuously educates Congress on behalf of all concerned with FSHD. The Society submits appropriations testimony before the U.S. House and U.S. Senate Appropriations committees regarding appropriations for the NIH for research on FSHD. To read current year and past year's tesimonies please click:
FSH Society FY2010 Written Testimony U.S. Senate Appropriations for NIH Research on FSHD May 25, 2009 (PDF)
FSH Society FY2010 Written Testimony U.S. House Appropriations for NIH Research on FSHD May 1, 2009 (PDF)
FSH Society FY2009 Written Testimony U.S. Senate Appropriations for NIH Research on FSHD April 27, 2008 (PDF)
FSH Society FY2009 Written Testimony U.S. House Appropriations for NIH Research on FSHD March 20, 2008 (PDF)
FSH Society FY2008 Written Testimony U.S. Senate Appropriations for NIH Research on FSHD March 30, 2007 (PDF)
FSH Society FY2008 Written Testimony U.S. House Appropriations for NIH Research on FSHD March 27, 2007 (PDF)
FSH Society FY2008 Oral Testimony (4 Minutes) U.S. House Appropriations for NIH Research on FSHD March 27, 2007 (PDF)
The FSH Society was instrumental in rewriting the MD CARE ACT 2001 to meet the needs of the entire community – people with all nine major types of muscular dystrophy - not just one type of muscular dystrophy. On December 18, 2001, Congress passed the Muscular Dystrophy Community Assistance Research and Education Act (MD CARE ACT), an unprecedented law mandating research, study and education on each type of muscular dystrophy. The law established the Muscular Dystrophy Coordinating Committee (MDCC) oversight committee to coordinate activities across the NIH, national research institutes and federal health programs relating to all forms of muscular dystrophy. The MDCC is responsible for developing and implementing a plan for conducting and supporting research and education on muscular dystrophy, measuring progress, and periodically reviewing and revising the plan.
The FSH Society was also quite involved with the MD CARE ACT 2008 reauthorization process and made sugestions and comments to strengthen the Act for all non-Duchenne muscular dystrophies.
Daniel Paul Perez, President & CEO of the FSH Society, was appointed to the MDCC at its inception in 2003, one of only five of patient advocates appointed to the committee. The MDCC has developed a research and education plan for muscular dystrophies for the NIH and other federal agencies involved with muscular dystrophy.
In addition, the Society accumulates, disseminates and encourages the exchange of information about FSHD, including educating the general public, governmental bodies, and the medical and scientific professions about FSHD. It also acts as a liaison among consumers, government and industry concerning research and development of drugs, therapies and devices for FSHD.
