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  • Friends of FSH Research Friends of FSH Research


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Mission Statement

Friends of FSH Research

Mission Statement

Fascioscapulohumeral Dystrophy, or FSHD, is a degenerative muscular disease for which there is no treatment or cure. We believe that with increased public awareness and research funding a cure can be found.

The specific objectives and purposes of the corporation shall be:

1. To encourage, promote and fund increased scientific and clinical research of Fascioscapulohumeral Dystrophy, or FSHD.

2. To conduct fund raising efforts and solicit grants and contributions from individuals, private foundations and others, in order to sponsor research to help advance the study and understanding of FSHD, with the goal of identifying treatment and a cure for the disease.

3. To disseminate information about FSHD and encourage additional public support for FSHD research by raising public awareness of the need for more research funding.


Grass roots, family originated, organization with a mission to increase research interest and funding for Facioscapulohumeral Muscular Dystrophy. Currently only fund raising is through a yearly auction; third event will be held January 27,2007 at the Bellevue Hyatt.

FSHD muscular dystrophy has been overlooked by current funding sources so research progress has been impacted. Though FSHD is the 2nd most common form of Muscular Dystrophy, other charity groups do not actively support this research.

Our son helped organize our group through his work completing his senior high school project, it is our family's aim to continue this work and increase FSH research.


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