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Burgess, Engel Work to Continue Improving the Lives of Patients Impacted by Muscular Dystrophy

Press Release

Location: Washington, DC

Congressmen Michael C. Burgess, M.D. (R-Texas) and Eliot Engel (D-New York) both recognize that more can be done to help those living with muscular dystrophy. To help ensure that the federal work impacting those with muscular dystrophy, keeps up with current science and that patients receive safe and effective therapies for all forms of muscular dystrophy they have introduced the Muscular Dystrophy Community Assistance, Research and Education Act (MD CARE Act) Amendments Act of 2013, H.R. 594.

Originally signed into law 12 years ago, there has been great success in coordinating and focusing research relating to muscular dystrophy and improving care standards aimed at improving clinical care across the muscular dystrophies. Had Congress not enacted the MD CARE Act in 2001 and its subsequent reauthorization in 2008, much of this progress likely wouldn't have occurred.

"While we have seen great progress, we know there is more work to be done," said Dr. Burgess. "Our legislation will enhance existing research efforts, and intensify existing surveillance and tracking of all the muscular dystrophies, and will ensure that valuable data informs the biomedical research agenda. All of these will help support the quality of research and care, and will help support adults living with various forms of muscular dystrophy so they can live independent, productive and rewarding lives."

"As a cosponsor of the original MD-CARE Act of 2001 and the lead sponsor of the first reauthorization effort in 2008, I have been involved in seeking improvements to research and treatments for muscular dystrophy for many years. Many of the improvements we have found in the fight against MD are directly related to the passage of the MD CARE Act 12 years ago. Since the passage of the MD CARE Act, the average lifespan of Americans living with Duchenne MD, the most common form of muscular dystrophy in children, is an estimated 10 years longer than it was before the MD CARE Act became law. It is definitely worthy to once again reauthorize the law. I am pleased to work with my colleague, Congressman Burgess, on this issue, and I look forward to working in a bipartisan manner with my colleagues to urge its passage," said Rep. Engel.

Since 2001, there have been 67 clinical trials of drugs or therapies for muscular dystrophy and there are currently 37 clinical trials underway. A number of the potential therapies now in clinical investigation can be traced to the basic research efforts stemming from this law.

The MD CARE Act recognizes the challenging fiscal climate by providing no additional increase in authorized appropriations.

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