LINKS
Aidan in the Swimming Pool
 

The following links have proved helpful and/or hopeful to us as we try to cope with the diagnosis. Mindy's two favorites are the Charley's Fund and Parent Project.

Charley’s Fund
http://www.charleysfund.com - A foundation whose purpose is to fund current and powerful research to fight DMD. Started by parents whose son has Duchenne.

Parent Project Muscular Dystrophy
http://www.parentprojectmd.org/site/PageServer?
pagename=nws_index – An organization devoted to improving the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy. Information, inspiration, and ways to help in general…

FED
http://www.duchennemd.org/welcome.htm
Also started by parents whose son has Duchenne, this foundation's goal is also to find a cure for DMD. Both parents are lobbyists in Washingtonn DC and have been very successful in getting funds the Children's National Medical Center (CNMC) and CINRG. CINRG, the Cooperative International Neuromuscular Research Group established by CNMC scientists, is the only human clinical trials network for Duchenne Muscular Dystrophy in the world.

Cure Duchenne
http://www.cureduchenne.org/
Started by parents whose son has Duchenne, the goal of this West Coast foundation is similar to Charley's Fund - to find a cure for Duchenne in time for their son.

Muscular Dystrophy Association
http://www.mdausa.org/ - MDA home page.

http://www.mdausa.org/disease/index.html - A listing of the types of muscular dystrophy with links to information about each type.

National Institutes of Health
http://www.ninds.nih.gov/disorders/md/md.htm - An informational page on muscular dystrophy from NIH, it also includes links to other informational and helpful sites.

Kids’ Health – The Meaning of Muscular Dystrophy
http://kidshealth.org/kid/health_problems/bone/
muscular_dystrophy.html - Informational pages geared to kids.

Research Links
The following links tell of research being done. Whether this will be relevant for Aidan remains to be seen, but it’s hopeful to see that work is underway.