Helpful Links

What is DMD?

Leiden Muscular Dystrophy pages © – Center for Human and Clinical Genetics, Leiden University Medical Center
www.dmd.nl/

Indegene – Childhood Muscular Dystrophies
www.indegene.com/Neu/FeatArt/indNeuFeatArt4.html?type=Neu

GeneTests.org – Dystrophinopathies
www.geneclinics.org/profiles/dbmd/

Neuromuscular – Dystrophinopathies
www.neuro.wustl.edu/neuromuscular/musdist/dmd.html

Yahoo Health Duchenne Description – http://health.yahoo.com/ency/healthwise/nord37

Stem Cell Watch – http://ginasmith.typepad.com/stemcell_news_digest_/
2005/06/wednesday_stem_.html

Muscular Dystrophy Center – Washington DC

Research News

News in Muscular Dystrophy
www.distrofiamuscular.net / news.htm

Duchenne Research
www.duchenne-research.com

National Initiative for Families with Duchenne (NIFD)
The first large-scale needs assessment survey of the
Duchenne muscular dystrophy community in the US.
Click here for more information or to participate in the
survey.

Living with DMD

Living for Today, Preparing for Tomorrow
www.livingfortoday.org

MD Transitions Group
http://groups.msn.com/DMDTransitions/welcome.msnw

DMD Realities
http://groups.yahoo.com/group/dmdrealitiesgroup/

DMD Pioneers
http:// www.dmdpioneers.org/forum /

MD Awareness

Hope for Muscular Dystrophy
http://groups.msn.com/HopeforMD

Support Groups

Support and Discussion of Muscular Dystrophy
http://groups.yahoo.com/group/MD-List/?yguid=131571991

For All Moms
http://groups.yahoo.com/group/singleparentcafe/?yguid=131571991

Friends of FED Websites

John John Boom’s Marine Corps Marathon Website

Mark Carson’s Caring Bridge

For Children

Hope for Muscular Dystrophy Kids Connection
http://groups.msn.com/HopeforMD/kidzconnections.msnw

Leadership

Board of Directors

Joel Wood, President | Scott Sinder, Secretary | James Wood, Treasurer | Dan Carson, Director | Dave Heil, Director | Brad Todd, Director

Advisors

Dr. Eric Hoffman Dana Wood Monica Heil Tina Carson

Staff

Michelle Payne, Executive Director

Financial & Tax Information

FED strives to be transparent in our work. Here are links to our most recent IRS form 990 and audited financial statements. If you have questions, please do not hesitate to contact us.

What is Duchenne Muscular Dystrophy?

The words “incurable” and “untreatable” have been closely associated with Duchenne. It is an X-chromosome disease that afflicts boys, and it will never be eliminated through genetic screening because the dystrophin gene is the largest gene in body – times ten – and thus much more prone to have flaws that are not inherited. The trajectory of this disorder is insidious. Duchenne boys typically are not diagnosed until they are four years old or older. They tend to get better in the so-called “honeymoon” stage, which usually lasts until the early teenage years. But their muscles are deteriorating and cannot regenerate. Dystrophin is part of the chemical glue that holds muscle cell walls together, and those walls eventually collapse and are filled with collagen that causes fibrosis. First the legs give out, slowly, then, the arms and upper body. The disease moves from skeletal muscle to smooth muscle tissue. Lungs and hearts deteriorate. Corticosteroid treatment forestalls the muscle deterioration, but steroids have terrible side effects such as making bones brittle. Unlike many single-gene-defect disorders that only strike at certain ethnicities or demographics, Duchenne is a disease that does not discriminate – it is the world’s leading lethal inherited disease, afflicting one in 3,500 boys. The incidence rate among all races is identical. As the world becomes more conscious of issues of racial disparity, it is clear that standards of care are resulting in disparate quality of life and certainly life expectancy among sufferers of different races. You get the picture. Duchenne Muscular Dystrophy is excruciating, ruthless, sadistic, and painful. More than anything, it is cruel. The FED’s mission is to identify, leverage, and bring to market treatments that will benefit ALL sufferers of this disease.