Duchenne Muscular Dystrophy
For generations, a Duchenne diagnosis was a final verdict. There were no meaningful treatments. But now multiple companies are developing gene therapies - Andrew Joseph
image by: CureDuchenne
But for all the money collected toward a cure, Duchenne muscular dystrophy, the most common form of the disease that afflicts children, still confines thousands of boys in this country to wheelchairs in their early teens. Many do not live past their 20s...
The approach is changing at a few medical centers, which are focused on making better use of available therapies to eke out longer lives for their patients. Rather than concentrate only on a cure, some researchers are now intent on developing drugs that may alleviate the effects of the disease. But, absent a cure, too many doctors around the country still assume there is little or nothing that can be done for the muscle-wasting…
But for all the money collected toward a cure, Duchenne muscular dystrophy, the most common form of the disease that afflicts children, still confines thousands of boys in this country to wheelchairs in their early teens. Many do not live past their 20s. It is a stark reminder of how American medicine with its focus on breakthrough treatments can sometimes fail a complex, rare and stubbornly uncurable disease. Single-minded in their pursuit of a cure, doctors and researchers for years all but ignored the necessary and unglamorous work of managing Duchenne (pronounced doo-SHEN) as a chronic condition.
Not just life as a mother, but an unexpected one as a mother of a son with Duchenne Muscular Dystrophy.
CureDuchenne is a national nonprofit that raises awareness and funds to find a cure for Duchenne muscular dystrophy. For the first time ever there is hope to find a cure for this destructive disease affecting thousands of boys and their families.
DMDfund is a non-profit 501 (c)(3) organization founded by parents, relatives and friends of kids who have DMD. DMDfund is dedicated to finding a cure for DMD by funding research, so that millions of kids worldwide can live.
Duchenne is a genetic disease and boys are historically diagnosed by the ages of 5 to 6 years old. My wife and I started the Fighting Duchenne Foundation to fight for kids all over the world that can’t fight for themselves. Without your help, over 200,000 kids born with Duchenne, including our 2 sons will not have the possibility of enjoying a long and healthy life.
Welcome to the Foundation to Eradicate Duchenne, a 501c(3) organization established in 2002 with the goal of finding treatments and an ultimate cure for Duchenne Muscular Dystrophy, the world’s leading lethal childhood genetic disease.
Since 2001, the Jett Foundation, located in Kingston, MA, has worked to find treatments and a cure for Duchenne muscular dystrophy while improving the lives of those affected by DMD. Over the past decade, the Jett Foundation has raised almost 2 million dollars for Duchenne research. The foundation currently funds the Jett Program for Pediatric Neuromuscular Disorders at Mass General Hospital for Children. The Jett Foundation provides resources for treatments and adaptive activities as we work toward a cure and treatments for Duchenne.
PPMD is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy–our mission is to end Duchenne. We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite, and educate the global Duchenne community.
The foundation was established to fund critical research for treatments and a cure for Duchenne Muscular Dystrophy, the most lethal genetic childhood disease which targets young boys, without regard to ethnicity, and leads to death from respiratory or heart failure by their early 20's. Without a breakthrough in ongoing medical research and treatment, there is little hope that these children, will live to adulthood.
Duchenne muscular dystrophy affects approximately 1 in 3500 male births worldwide. Because this is an inherited disorder, risks include a family history of Duchenne muscular dystrophy.
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