Muscular Dystrophy
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.
Write:
Parent Project for MD Research
401 Hackensack Ave., 9th Floor
Hackensack, NJ 07601
Voice: 1-800-714-5437 or 201-944-9985
Fax: 201-944-9987
Website: http://www.parentprojectmd.org
E-mail: info@parentprojectmd.org
Verified: 10/19/2011
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 Association
3300 E. Sunrise Dr.
Tucson, AZ 85718-3299
Voice: 1-800-572-1717
Fax: 520-529-5300
Website: http://www.mdausa.org
E-mail: mda@mdausa.org
Verified: 4/1/2011
National network. Founded 1991. Support, information, education, networking and advocacy for individuals with facioscapulohumeral disease (aka Landouzy-Dejerine muscular dystrophy). Purpose is to increase awareness, understanding and conduct research and education on the most prevalent muscular dystrophy. 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.
Write:
FSH Society, Inc.
Nancy VanZant, c/o BBRI R353
64 Grove St.
Watertown, MA 02472
Voice: 617-658-7878
Fax: 617-658-7879
Website: http://www.fshsociety.org
E-mail: info@fshsociety.org
Verified: 8/22/2011
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org
Copyright � 2011 American Self-Help Group Clearinghouse. All rights reserved.
WebMD Medical Reference from the American Self-Help Clearinghouse 
Today in Children’s Health
Health Solutions From Our Sponsors
©2005-2013 WebMD, LLC. All rights reserved.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.