[Congressional Record Volume 148, Number 14 (Thursday, February 14, 2002)]
[Senate]
[Pages S849-S850]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




          NATIONAL DUCHENNE MUSCULAR DYSTROPHY AWARENESS WEEK

  Ms. COLLINS. Mr. President, as we commemorate National Duchenne 
Awareness Week, I express my gratitude to my colleagues and to the Bush 
administration for their support late last year in passing H.R. 717, 
the Muscular Dystrophy Community Assistance Research and Education Act.

[[Page S850]]

  Sadly, at this time, there is no cure for DMD. Little boys with DMD 
are most often not diagnosed before the age of 2 or 3 years. Most boys 
with DMD walk by themselves later than average, and then in an unusual 
manner. They may fall frequently, have difficulty rising from the 
ground, or experience difficulty going up steps. Calf muscles typically 
look over-developed or excessively large, while other muscles are 
poorly developed. Use of a wheelchair may be occasional at age 9, but 
total dependence is usually established in the teen years. Most boys 
affected survive into their twenties, with relatively few surviving 
beyond 30 years of age.
  I have heard from the parents and family of two little boys in Maine 
who have DMD. Their names are Matthew and Patrick Denger, and their 
family members are desperately hoping for a cure so they don't have to 
watch their sons suffer the long-term impacts of this debilitating 
disease. While we are far from finding a cure for DMD, I am hopeful 
that the MD CARE Act, signed into law by President Bush on December 18, 
2001, will help Matthew and Patrick and the thousands of other young 
boys suffering from DMD. Specifically, the act authorizes the Secretary 
of Health and Human Services to expand and increase coordination of the 
activities by the National Institutes of Health with respect to 
research on muscular dystrophies, including DMD.
  Efforts to improve the quality and length of life for thousands of 
children suffering from Duchenne muscular dystrophy are valuable beyond 
measure, and I commend all of my colleagues and all of the families who 
have worked so hard to raise awareness about this devastating disease.

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