Duchenne MD Awareness Week

DUCHENNE MD AWARENESS WEEK

Ms. COLLINS. Mr. President, this week is the Parent Project Muscular Dystrophy's Duchenne MD Awareness Week. It is also the 2-year anniversary of the introduction of the MD CARE Act, which I was pleased to cosponsor with our late colleague, Senator Paul Wellstone, to raise awareness and expand Federal support for medical research to find a cure for this devastating disease.

The need for this legislation was first brought to my attention by one of my constituents, Brian Denger, of Biddeford, ME, who has not one, but two wonderful boys—Matthew and Patrick—with Duchenne Muscular Dystrophy. The Dengers—who also have a daughter, Rachel, with juvenile diabetes—are a loving and courageous family whose strength and spirit inspired me to become involved in advocating for more research funding for muscular dystrophy.

Until I met Brian, I really did not know much about Duchenne Muscular Dystrophy. He was the first to tell me that 1 in 3,500 male children worldwide will be born with the disease and lose the ability to walk by age 10. He told me about the terrible progression of the disease. As it progresses, muscle deterioration in the back and chest begins to put pressure on the lungs, making it more and more difficult for the child to breathe.

What really caught my attention was the fact that the lifespan of children suffering from this disease has not been extended in any significant way in recent years. Current treatment options for boys like Matthew and Patrick are minimal and aimed simply at managing their symptoms in an effort to optimize their quality of life for the limited time they have with us.

Given our Nation's wealth of scientific expertise coupled with the tremendous infusion of resources we have poured into the NIH in recent years, we can and should do more for families like the Dengers. That is why I joined with Senator Wellstone in introducing the MD CARE Act, which President Bush signed into law in December of 2001.

Since the passage of this important legislation, the National Institutes of Health have established grants for the creation of three Centers of Excellence in Muscular Dystrophy Research, which will provide focused research and development in all phases—including basic, clinical, and transitional—of the research spectrum. In addition, the Centers for Disease Control and Prevention have developed an in-depth surveillance and epidemiology study of Duchenne and Becker muscular dystrophy. A population-based epidemiological study of Duchenne and Becker muscular dystrophy will provide the extensive data necessary to inform research decisions, standards of care, physician training, and public health approaches to assist families living with Duchenne and Becker muscular dystrophy.

The NIH and the CDC are to be commended for the progress they are making in their research efforts related to muscular dystrophy. These efforts to improve the quality and length of life for thousands of children diagnosed with muscular dystrophy are invaluable, and I commend the researchers and all of the families who have worked so hard to combat this devastating disease.