Political Quotes

“This legislation, H.R. 225, the National Pediatric Research Network Act of 2013, indeed brings us a step closer to helping kids with unmet health needs, especially those with rare pediatric and genetic diseases. According to the NIH, there are more than 6,800 rare diseases, and most of them have no treatment or cure; and, yes, they primarily affect children. I've met a number of times with one family in my district, the Kennedys, who have two precious little girls, Brielle and Brooke. I actually call them Sleeping Beauty and Cinderella. They have the rare disease called spinal muscular atrophy. They're great kids, and Brielle and Brooke have been little warriors in our effort to make the National Pediatric Research Network a reality. It is so difficult to conduct research into these diseases due to the very small number of people with that disease, but tonight we're working to provide families like the Kennedys and so many others with greater hope for a cure or advances in treatment. This bill is going to support and coordinate research on rare pediatric and genetic diseases and help improve the health and well- being of these kids afflicted with these diseases. This bill establishes a national pediatric research network comprised of pediatric research consortia. These consortia are a proven way to overcome the gaps in research. They include leading institutions that act as partners to consolidate and coordinate research efforts.…”