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(SMDI) * International. Fomred to help people share information, to link people with people and organizations concerned with their disorder, to share inforamtion to help people help themselves and to create public awareness of neuromuscular disorders/disabilities and the world's organizations and support groups for the disorder. Publishes two quarterly newsletters.
PO Box 7490
Bridgewater, NS, CANADA B4V 2X6
International network. Founded 1994. Support for parents of children with Duchenne and Becker muscular dystrophy. To improve the treatment, quality of life and long-term outlook for all individuals affected by DMD through research, advocacy, education and compassion. Provides user-friendly website with online forums, scientific and legislative conferences, newsletters, information on newest diagnosis tests, standards of care and research strategies.
Parent Project for MD Research
401 Hackensack Ave., 9th Floor
Hackensack, NJ 07601
Voice: 1-800-714-5437 or 201-944-9985
National. 200+ chapters. Founded 1950. Provides comprehensive health care, support services,, advocacy and education. Support programs include some 200 MDA-facilitated support groups located throughout the United States, MDA's online care coordination tool myMuscleTeam, scheduled online chat sessions and active community on MDA's Facebook, Twitter and YouTube pages.
Muscular Dystrophy Assn.
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
National network. Founded 1991. Support, information, education, networking and advocacy for individuals with facioscapulohumeral muscular dystrophy, facioscapulohumeral disease, or FSHD (aka Landouzy-Dejerine muscular dystrophy). Purpose is to increase awareness, understanding and conduct research and education on the most prevalent muscular dystrophy affecting one half-million individuals worldwide. Funds research through grants to researchers. Acts as a clearinghouse for information on the FSHD disorder and on potential drugs and devices designed to alleviate the effects of the disease. Newsletter, support group meetings, conferences and literature.
FHS Muscular Dystrophy Society
450 Bedford St.
Lexington, MA 02420