Reauthorization of Muscular Dystrophy Bill Signed into Law
- Filed under: Health News
- Date: Oct 10,2008
Non-profit advocacy group, Parent Project Muscular Dystrophy (PPMD), works with bipartisan Congressional champions to gain passage
President George W. Bush signed into law legislation to fund important research and improve patient care for muscular dystrophy. The bill builds on the success of an earlier act, called the MD-CARE Act, which was adopted in 2001. The new legislation was unanimously agreed to by the U.S. House of Representatives and the U.S. Senate.
“This bill means so much to the boys with Duchenne, their families, and everyone touched by this lethal disease,” said Pat Furlong, founder and CEO of the Parent Project Muscular Dystrophy (PPMD). Furlong and her group initiated and pushed the original legislation in 2001, and again led the effort to advocate for the law’s reauthorization.
“I would like to thank the many advocates and especially our Congressional champions for their leadership and unbelievable support,” Furlong said. “This action continues the hope that we are on the path toward a cure.”
The legislation (bill number H.R. 5265), is entitled the “Paul D. Wellstone Muscular Dystrophy Community Assistance Research and Education (MD-CARE) Amendments.” It is named after the late Senator from Minnesota, who helped champion the cause of muscular dystrophy.
Rep. Eliot Engle (D-NY) led the effort in the U.S. House on behalf of the Muscular Dystrophy community. “Prior to 2001, there were few resources directed toward research and development of therapies and care models for those afflicted with muscular dystrophy,” Engel said. “The reauthorization of the Muscular Dystrophy Care Act gives new hope to the families of the thousands of boys whose lives are cut far too short by this deadly disease. I am so proud to be a part of this effort.”
U.S. Senator Roger Wicker, (R-MS), who as a House member wrote the original legislation in 2001, praised today’s action. “This is a great achievement for the U.S. Congress and an even greater achievement for the thousands of boys across the country with Duchenne,” Wicker said.
“Finding a cure for muscular dystrophy transcends partisanship,” Senator Amy Klobuchar (D-MN) said. Klobuchar was the lead sponsor in the United States Senate of the reauthorization bill. “Thanks to Paul Wellstone’s original legislation, there have already been major research advances,” said Klobuchar.
Duchenne muscular dystrophy (Duchenne) is the most common fatal genetic disorder diagnosed in childhood. It affects one in every 3,500 boys born in America, equally affecting all races and cultures. The disease causes a progressive loss of muscle strength, leading to loss of mobility and serious problems related to their heart and lungs. Young men with Duchenne can live into their late twenties.
A leading champion of the legislation, Sen. Johnny Isakson (R-GA) said, “I’m extremely pleased the Congress has passed this legislation. It is my hope that this legislation will help researchers develop a better understanding of this disease, leading to improved treatments and real hope for the many families affected by muscular dystrophy.”
The 2001 legislation — the first of any Muscular Dystrophy legislation to pass Congress — directed the National Institutes of Health to establish six centers of excellence and to establish a government wide Muscular Dystrophy Coordinating Committee to ensure collaboration and unity of efforts. It also directed the Centers for Disease Control and Prevention to expand data collection on muscular dystrophy. Since passage of the legislation in 2001, major advancements are taking place in research, drug trials, and care methods.
Source: Parent Project Muscular Dystrophy
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