Department of Defense Appropriations Act, 2016

Floor Speech

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Mr. KEATING. Mr. Chairman, I rise today to offer an amendment to add an additional $1 million for research and development for Duchenne muscular dystrophy. Duchenne muscular dystrophy is the most common lethal genetic disorder affecting American children today.

It is a progressive neuromuscular disorder that affects approximately 1 in every 3,500 boys or 200,000 babies born each year worldwide. Over time, patients experience severe loss of muscle strength and control.

Most boys diagnosed with Duchenne lose their ability to walk by the time they become teenagers. There is no known cure for Duchenne, and life expectancies for individuals with this disease are significantly shortened. Many do not live past their 21st birthday.

Like many of my colleagues, I have met with many Duchenne patients and their families and have seen the impact this disease has and what it imparts on their daily lives.

There have been very promising advances in recent years, including development of a new drug which has achieved success in early clinical trials. I have had one child in my district confined to a wheelchair who, under this clinical trial, is able to walk by himself currently. However, much more work needs to be done to find a cure for this disease and to better understand what causes Duchenne in the first place.

This amendment will directly benefit the thousands of Duchenne patients throughout the United States, as well as their countless loved ones who care for them every day. By increasing funding for peer-reviewed research, institutions across the country will have additional resources necessary to make progress on eliminating this devastating disease.

We as a nation are on the cusp of historic progress in advancing critical research. Now is the time to recommit to robust support of our country's biomedical research for this disease.

In closing, I would like to thank the countless physicians, researchers, and scientists who work tirelessly to find a cure for Duchenne. I would also like to thank the Jett Foundation, which has long been a national leader in increasing awareness and providing support for patients and their families.

I urge my colleagues to support my amendment, and I thank the chair and ranking member for their consideration.

I reserve the balance of my time.

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Mr. KEATING. I thank the chairman for the effort he is going through and the consideration he is giving with this.

Many times, we have the opportunity to talk to families and deal with issues. In this particular instance, we have an opportunity. As I mentioned, we are right on the cusp of very significant research. Leveraging a small additional amount now would have tremendous ramifications.

I was just completely struck by the fact that I saw a person--a young boy in his teens, confined to a wheelchair, like so many of those afflicted with this terrible disease have had to suffer through, and as a result of those clinical trials, to see that person no longer in a wheelchair and up and ambulatory and walking, those are the type of dramatic improvements we are on the cusp of right now.

That is why this amendment just seeks to get an incremental increase with that because I think it would be leveraged and have enormous significance as a result.

I reserve the balance of my time.

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