National Pediatric Research Network Act of 2013by Representative Gregg Harper
Posted on 2013-02-04
HARPER. I rise today to speak about the importance of the
National Pediatric Research Network Act of 2013. This bill rightfully
develops pediatric research consortia to identify and promote therapies
for rare childhood diseases.
One of the disorders that this proposal targets is spinal muscular atrophy, or SMA, which is the number one genetic killer of children under the age of 2. This often unforgiving neurological disease leaves children weak and unable to move, breathe, swallow or talk; but research is promising and a cure is close.
Recently, a friend of mine, Jeff Horton from my home county in Mississippi, shared with my office that his daughter, Evie, who has SMA, had an encouraging visit with an SMA specialist in Dallas. You see, Evie has toured the country and has met with experts devoted to advancing new and innovative SMA therapies. As a result, Evie's quality of life continues to improve as she gains mobility and a sense of independence.
I urge you today to please support this legislation for Evie and others, such as her cousin, Reese, and the many other families that are affected by rare childhood diseases. This is something that we can do and that we should do.