[Congressional Record (Bound Edition), Volume 149 (2003), Part 2]
[Senate]
[Page 2829]
[From the U.S. Government Publishing Office, www.gpo.gov]




                       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.

                          ____________________