Muscular Dystrophy

Self Help Clearinghouse

International network. Founded 1983. Purpose is to share and encourage the exchange of non-technical, neuromuscular and disability-related information. Referrals to support groups via networking website.
Write:
SMDI International
P.O. Box 479, Bridgewater, NS
Canada, B4V 2X6
Voice: 902-685-3961
Fax: 902-685-3962
Website: http://www.societyneuromuscularinfo.org
E-mail: smdi_intl@mail_auracom.com
Verified: 11/16/2007

National. 200+ chapters. Founded 1950. Provides comprehensive medical services to persons with neuromuscular disease. Supports research into the causes, cures and treatments of neuromuscular disorders. Support programs include self-help groups, phone friends, pen pals and scheduled online chat sessions.
Write:
Muscular Dystrophy Assn.
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
Voice: 1-800-572-1717
Fax: 520-529-5454
Website: http://www.mda.org
E-mail: mda@mdausa.org
Verified: 5/2/2007

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, standards of care and research strategies.
Write:
Parent Project for MD Research
158 Linwood Plaza
Fort Lee, NJ 07024
Voice: 1-800-714-5437 or 201-944-9985
Fax: 201-944-9987
Website: http://www.parentprojectmd.org
E-mail: info@parentprojectmd.org
Verified: 10/29/2007