Susan Collins: “this week is the Parent Project Muscular Dystrophy's Duchenne MD Awareness Week. It is also the 2-year anniversary of…”

“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.”