"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.