U.S. Congressman Fred Upton

Washington, DC, Feb 4 -

Congressman Fred Upton (R-St. Joseph) spoke on the floor of the U.S. House of Representatives this evening in strong support of legislation to help improve the health and well-being of children afflicted with rare pediatric and genetic diseases.  The bipartisan National Pediatric Research Network Act of 2013 (H.R. 225) allows the National Institutes of Health (NIH) to fund pediatric research consortium that are formed from cooperating institutions to promote greater research efficiency and collaboration.  Upton has met on numerous occasions with Southwest Michigan families concerning this and other legislation to support children with rare and genetic diseases.  The House passed similar bipartisan legislation in 2012, which did not clear the Senate to reach the President’s desk.  H.R. 225 passed this evening by a vote of 375 to 27.

Click HERE to watch Upton's full Floor remarks.

“… I have 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 are 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 the disease.  But today we are working to provide families like the Kennedys and so many others with greater hope for a cure and advances in treatment. …”