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From The Desk Of Congressman Chris Smith:
Smith Supports Legislation To Advance Muscular Dystrophy Research And Education
 | | Congressman Chris Smith |
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WASHINGTON - U.S. Representative Chris Smith (R-NJ) has recently co-sponsored legislation, the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act, HR 5265, to support increased research and education for muscular dystrophy.
"The federal government needs to step up its efforts and provide the necessary tools to combat this severely debilitating disease," said Smith, who also cosponsored and voted for the original MD Care Act, signed into law in 2001 by President Bush (PL 107-84). "I am proud to support this vital legislation that I hope will bring us closer to finding a cure," Smith said.
Specifically,the new legislation would reauthorize federal funding for six centers of excellence for muscular dystrophy research and the MD Coordinating Committee (MDCC) and enhance the clinical research infrastructure required to test emerging therapies for the various forms of muscular dystrophy.
The centers of excellence are similar to the centers of excellence created by Smith in 2000 for autism research. "As we have seen with autism, creating centers of excellence that focus and specialize in research, treatment and care for a particular disease can yield significantresults," said Smith, who created the centers of excellence through his bill the Autism Statistics, Surveillance, Research and Epidemiology Act (ASSURE) that became title I of the Child Health Act and was signed into law (PL 106-310).
David Schultz, a Hamilton, NJ policeman who, along with his wife Maria, founded the non-profit group, Ryan's Quest, after their 2-year-old son Ryan was diagnosed with Duchenne muscular dystrophy, praised Smith's support for the bill. "Raising awareness about DMD is very important to us. It is an extremely overlooked disease that receives a large amount of its funding for research through grass-roots organizations, such as Ryan's Quest. Therefore, strong advocacy is needed to further these efforts. We would like to thank Congressman Christopher Smith for supporting and co-sponsoring the MD-CARE Act of 2008, which will help secure funds from the federal government towards muscular dystrophy," said the Schultz.
Ryan's Quest is dedicated to raising awareness and funding for research into DMD. The group has already sponsored several successful events including walkathons and cook-offs with larger events planned including sponsoring a team in an upcoming triathlon under the banner Tri'n 4 Ryan and a Dine and Dance for Duchenne. "Hope has inspired us to dedicate our lives to saving Ryan and other boys affected by Duchenne," said David and Maria Schultz.
"Funding for muscular dystrophy and especially Duchenne muscular dystrophy has allowed scientists to take great strides toward better treatments and possibilities of finding a cure for this disease. Within the DMD community, experts agree that we are on the brink of a scientific breakthrough. It is no longer a matter of if; it is a matter of when. However, time is working against Ryan and these boys each day. We must act now to save their lives. DMD research has attained a promising team of doctors, scientists and families who are committed to this cause; we just need the resources to succeed in finding a cure," said the Schultz.
Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy in children and is usually diagnosed when a child is 3 to 6 years of age. DMD affects approximately one out of every 3,500 children, nearly all boys. There are currently approximately 10,000 boys living with DMD in the country and about 250 in New Jersey. As the child ages, muscle deterioration continues to progress and around the time they are 12 years of age, children with DMD become unable to walk. The disease is usually fatal in the teens or early 20s, most commonly due to severe respiratory or heart problems, or both.
At this time, there is no cure for DMD.
For more information on Ryan's Quest, please visit Ryan's Web site at www. ryansquest.org.
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