FSH Society was founded as a grassroots organization in 1991 by families affected by a then little-known genetic and degenerative form of muscular dystrophy, known as Facioscapulohumeral Dystrophy (FSHD) — affecting skeletal muscles, putting its frequently child victims in wheelchairs by the time they are 12. Today, only 15 years later, FSHS is a world leader in combatting muscular disease. It wrote legislation mandating National Institutes of Health research on muscular dystrophy; it has provided $1 million in seed grants to pioneering research worldwide, leading to substantial NIH funding; it has created an international collaborative network of patients and researchers, and sponsored the U.S. National Registry for FSHD at the University of Rochester. Its website hosts a global chat room and bulletin board connecting clinicians, patients and researchers, and FSHS sponsors biennial international conferences for researchers and patients. It is represented on major boards in this field, including the National Institute for Disability Research at the University of California, Davis. FSHS relies entirely on private grants and donations, so grassroots philanthropy is leading the way here, and if you want to go with a leader, here is your opportunity.