On the recordApril 28, 2016
I appreciate the advocacy of the Senator from Washington, and I do look forward to working with the Senator on this as well. Hopefully, we can get a result on this. There is going to be a recess now, and that means for 10 days people will be going back to their home States. So I hope when we come back a week from Monday, we will hear that we have a plan that we are going to be able to vote on and vote on it quickly. Duchenne Muscular Dystrophy and FDA Advisory Panel Madam President, on a separate topic, I want to call attention to a remarkable group of advocates who are bound together, not by a common race or religion or political ideology but by the common hope of one day ridding the world of a rare disease named Duchenne muscular dystrophy. Duchenne is one of multiple different forms of muscular dystrophy. It affects mostly boys, almost exclusively, at the rate of 1 per 3,600 individuals. Its primary symptom is the steady deterioration of muscle mass beginning early in childhood. By the age of 12, most boys with Duchenne have lost the ability to walk and eventually become paralyzed from the neck down. I am sad to say there is currently no cure for Duchenne, and the average life expectancy is around 25 years. I am personally the parent of four children, including two boys, and I can only imagine--perhaps I can't imagine; that is how difficult it is--what it must be like to have a child receive this diagnosis.…
Source
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