FacioScapuloHumeral
Muscular Dystrophy Society
Copyright ©1991-2007 FSH Society, Inc.
FSH Society, Inc., 3 Westwood Road, Lexington, MA 02420 USA. Phone: (781)
860-0501, (781) 275-7781. Fax: (781) 860-0599
The Facioscapulohumeral Muscular Dystrophy Society (FSH Society) is a 501(c)(3) non-profit tax-exempt U.S. corporation organized in 1991 to fund, encourage and promote scientific and clinical research on Facioscapulohumeral Muscular Dystrophy (FSHD). Papers certifying its incorporation, bylaws and tax-exempt status are deposited at the Corporation's east coast office.
The FSH Society is a world leader in combating muscular dystrophy. It has provided millions of dollars in seed grants to pioneering research worldwide and it has created an international collaborative network of patients and researchers. The Society relies entirely on private grants and donations and so grassroots philanthropy is leading the way here, and if you want to go with a leader, here is your opportunity. Contributions are acknowledged for tax purposes.
FSHD is the second most prevalent adult muscular dystrophy. FSHD affects men, women and children. It occurs with a frequency of 1/20,000 in the population and may be three times higher due to misdiagnosed cases. The majority of cases of FSHD are caused by a genetic defect or deletion on chromosome 4. FSHD is genetically autosomal dominant meaning that a child of either sex has a fifty percent chance of inheriting the genetic defect from an affected parent. Thirty percent of new FSHD patients have no prior family history and are a result of a congenital spontaneous genetic mutation. Once present, FSHD is genetically transmissible. Genetic diagnostic and prenatal diagnostic tests are available as well as pre-implantation genetic diagnosis (PGD).
FSHD causes a progressive loss of all skeletal muscle, with weakness usually noticeable starting with facial, scapular/back and upper arm muscles. The prognosis includes both a loss of muscular strength that limits personal and occupational activities of most FSHD individuals and a loss of mobility in perhaps twenty percent of the cases. The early facial involvement is a hallmark of FSHD. The age of onset is variable as is the eventual extent and degree of muscle loss, but noticeable muscle weaknesses are usually present by the age of twenty in ninety-five percent of patients. Hearing loss and retinal abnormalities associated with FSHD have been reported, but the frequency of these effects and their relationship, if any, to the causative gene for the muscle defect are uncertain.
The FSH Society was created because of a need for a comprehensive resource for FSHD individuals and families. Purposes of the organization are:
to encourage and promote scientific and
clinical research and development on the causes, alleviation of suffering,
treatment and cure of FSHD;
to support such research and development through solicitation of
grants and contributions from individuals, private foundations, the
pharmaceutical industry and others to support such research and development;
to make grants and awards to qualified applicants so that such
applicants may accomplish such research and development;
to accumulate, disseminate and encourage the exchange
of information about FSHD, including educating the general public, relevant
governmental bodies, and the medical and scientific professions about the
existence, diagnosis and treatment of FSHD;
to actively cooperate with related organizations and foster
communication among all interested parties;
to serve as a resource for individuals and families with FSHD,
represent them and advocate on their behalf.
The Society invites contact from any interested individuals, families, physicians, caregivers, charitable organizations, government agencies, industry, scientific researchers and academic institutions. Any inquiries regarding membership, charitable donations, purposes and goals or other issues pertaining to the Society and FSHD, should be addressed to the east coast office.
Are you interested in additional information about FSHD and activities of the Society? Browse through the Newsletters at this Web site. For more expanded information of current understanding of FSHD, try FSH Watch On-line Library or FSH Society Patient Brochure . If you have questions or comments, leave a message on the bulletin board service for FSHD: BBS .
You can contact the FSH Society in a variety of ways:
Carol A. Perez, Executive Director
FSH Society, Inc.
3 Westwood Road
Lexington, MA 02420
Phone: (781) 860-0501
Fax: (781) 860-0599
E-mail: carol.perez@fshsociety.org
Daniel Paul Perez, President & CEO
FSH Society, Inc.
11 Elmbrook Circle
Bedford, MA 01730-1808
Phone: (781) 275-7781
Fax: (781) 275-7789
E-mail: daniel.perez@fshsociety.org
As this page expands and links to expanding sources of information regarding FSHD become available, we hope to see you back regularly as the search for a cause and treatment for a significant disease continues to unfold.