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Advocates In Muscular Dystrophy Community Press Congress For Fast Action On Muscle Disease Research And Treatment

"When I was first diagnosed with Becker muscular dystrophy 36 years ago, I'm not sure that anyone would have envisioned I would be a 44-year-old man with a passion for the Mets, Bruce Springsteen and serving as the University Dean for Student Affairs at City University of New York," said Chris Rosa, Ph.D.  "I've had to overcome many obstacles along the way, and all too often the resources I needed to overcome those obstacles did not exist. It's very encouraging to see this included in the Amendment so that we can create smarter policies and clear away some of the hurdles."     

The 2013 MD CARE Amendment also:

  • directs the Muscular Dystrophy Coordinating Committee to consider a plan to expedite approval of emerging therapies and personalized medicines with the potential to treat people with muscular dystrophy;
  • expands areas of research focus within the NIH-funded Paul D. Wellstone Muscular Dystrophy Centers of Excellence to include heart and lung function;
  • directs the CDC to develop and disseminate care considerations for adults with Duchenne and Becker muscular dystrophies (DMD/BMD, or DBMD); and
  • directs the CDC to develop and disseminate acute care considerations for adults with all muscular dystrophies.

MDA, PPMD and FED were instrumental in passage of the original act in 2001.

About Parent Project Muscular DystrophyDuchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (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, D.C., and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.

Everything we do — and everything we have done since our founding in 1994 — helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to ParentProjectMD.org for more information, or to learn how you can support our efforts and help families affected by Duchenne.

About the Foundation to Eradicate DuchenneThe Foundation to Eradicate Duchenne is 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.

The Foundation to Eradicate Duchenne was established by Dana and Joel Wood of Alexandria, Va. Their son James Wood, now 15, was diagnosed in May 2000 with Duchenne muscular dystrophy. The Woods are both lobbyists in Washington, D.C., and have devoted much of their time and energies to this cause, working with others to attain millions of dollars in federal earmarks for Duchenne muscular dystrophy research and a significant increase in the attention devoted to DMD at the National Institutes of Health. Additionally, through the FED and other fundraising efforts, they have raised approximately $10 million in private donations since James was diagnosed.

About MDA MDA is the nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

In addition to funding more than 250 research projects worldwide, MDA maintains a national network of 200 medical clinics; facilitates hundreds of support groups for families affected by neuromuscular diseases; and provides local summer camp opportunities for thousands of youngsters living with progressive muscle diseases.

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