[Congressional Record Volume 162, Number 66 (Thursday, April 28, 2016)]
[Senate]
[Page S2550]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      DUCHENNE MUSCULAR DYSTROPHY

  Ms. COLLINS. Mr. President, I wish to raise awareness about Duchenne 
muscular dystrophy and the boys and young men who suffer from this 
devastating disease.
  Duchenne muscular dystrophy was first brought to my attention 15 
years ago, when I met Brian and Alice Denger of Biddeford, ME. The 
Dengers had two wonderful sons, Matthew and Patrick, who were both born 
with Duchenne muscular dystrophy. Patrick, now 19, is a student at the 
University of New England. He recently received his driver's license 
and enjoys driving in Maine. His brother Matthew was a 20-year-old 
student at UNE when he died from the disease about 3 years ago. The 
Dengers also have a daughter, Rachel, with juvenile diabetes. They are 
a loving and courageous family whose strength and spirit directly 
inspired me to become involved in the fight for research funding to 
combat muscular dystrophy.
  Brian Denger was the first to tell me of the terrible progression of 
this type of muscular dystrophy. Symptoms begin in early childhood, and 
boys quickly experience severe and rapidly progressing muscle 
degeneration, which often results in their losing the ability to walk. 
Tragically, most die prematurely as a result of muscle-related cardiac 
and respiratory problems.
  In 2001, what really caught my attention was that the treatment 
options for boys with Duchenne muscular dystrophy were incredibly 
limited and aimed at managing symptoms in an attempt to optimize 
quality of life for the limited time that these children would have to 
share with us. Research had not yielded any meaningful way to extend 
the lifespan of children suffering from the disease. That is why I 
joined with the late Senator Paul Wellstone in introducing the MD CARE 
Act, to raise awareness and expand Federal support for research into 
this debilitating disease. It was signed into law and last reauthorized 
in 2014 and has resulted in dramatically improved and standardized 
clinical care for those with the disease. I have also fought diligently 
for increased funding for the Duchenne programs at the National 
Institutes of Health and the Centers for Disease Control and 
Prevention.
  Today there is some good news for the boys--and now--young men with 
Duchenne muscular dystrophy and their families. A number of therapeutic 
strategies are currently under development, and we have made dramatic 
progress to improve the quality and length of life for those who suffer 
from the disease. In fact, the average lifespan of Duchenne patients 
has increased by about a decade since the MD CARE Act became law.
  Given our Nation's wealth of scientific expertise, however, we can 
and should do more for families like the Dengers. We are making 
progress, but this is no time to take our foot off the accelerator. The 
$2 billion increase in funding for NIH that was included in the fiscal 
year 2016 funding bill will pay dividends for patients and their 
families. I urge my colleagues to continue to work collaboratively to 
sustain this commitment to biomedical research, which holds tremendous 
promise for finding better treatments and, ultimately, a cure for 
devastating diseases like Duchenne muscular dystrophy.

                          ____________________