The Mission and History of the FSH Society

The FSH Society:  A Partnership of Patients, Families, Clinicians and Scientists

The Facioscapulohumeral Society (FSH Society) is a privately funded not-for-profit organization. From its inception, the FSH Society has been patient-driven. The idea of creating an organization to provide FSH Dystrophy (FSHD)-affected persons and their families with information about FSHD and to promote FSHD-specific scientific and clinical research was conceived in 1988 by two men affected by the disease, Stephen J. Jacobsen, Ph.D. (see below), and Daniel Paul Perez, President and CEO. Dr. Jacobsen was already in the process of establishing a national FSHD cell bank, and contacts with persons involved in his study led to the development of a grass-roots organization dedicated to FSHD issues. A Board of Directors was created and donations were solicited. By late summer of 1993, thanks to generous donations of time and money from FSHD-affected persons and their families and friends, the FSH Society was fully functioning.

The FSH Society, through outreach at home and international networking, has brought together more than 4,000 FSHD-affected families committed to working cooperatively. From the moment of their introduction into the FSH Society, these families and their friends are bonded with their fellow members both by their common knowledge of what it is to live with FSHD and by the ardent desire they all feel to be part of a concerted effort to discover how to treat the disease and, ultimately, to cure it.

The FSH Society’s purposes are:

1. To accumulate, disseminate and encourage the exchange of information about FSHD, including educating the general public, governmental bodies, and the medical and scientific professions about the existence, diagnosis and treatment of FSHD;

2. To encourage and promote scientific and clinical research and development on the causes, alleviation of suffering, treatment and cure of FSHD;

3. To solicit grants and contributions from individuals, private foundations, the pharmaceutical industry and others to support such research and development;

4. To make grants and awards to qualified researchers so that they may accomplish such research and development;

5. To act as a liaison among consumers, government and industry concerning research and development with respect to drugs, therapies and devices for FSHD; and

6. To be a resource for individuals and families with FSHD, represent them and advocate on their behalf, and work cooperatively and collegially with organizations that are interested in FSHD, including the Muscular Dystrophy Association and the National Organization of Rare Disorders.

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In Memory of Three Dear Friends -- Stephen J. Jacobsen, Karen L. Johnsen and William T. “Billy” Michael