Standing with a Westlake Family to Battle Rare Diseases

sherrod brown

Alongside a Westlake family whose son is living with cystic fibrosis (CF), U.S. Sen. Sherrod Brown visited University Hospitals Rainbow Babies & Children’s Hospital in Cleveland to unveil new legislation aimed at increasing funding for pediatric medical research. Sen. Brown was joined by six-year-old Porter Chatterton, who was diagnosed with CF as a baby and is one of 350 patients cared for at the LeRoy W. Matthews Cystic Fibrosis Center, in calling for targeted research into rare, pediatric conditions.

“Though children make up 20 percent of the U.S. population, less than 10 percent of federal research dollars go toward research on pediatric conditions. Ohio is fortunate to have top-tier hospitals like Rainbow – especially for families like the Chattertons who have the support and resources they need when a child has a serious disease,” Sen. Brown said. “But pediatric research institutions and pediatric researchers face real financial challenges that threaten their important work. That’s why I will re-introduce the National Pediatric Research Network Act, to improve investments into pediatric research.”

Although children make up about 20 percent of the U.S. population, the National Institutes of Health (NIH) dedicates only about 5 to 10 percent of its annual research budget to pediatrics. Sen. Brown announced plans to introduce bipartisan legislation to ensure that the NIH investment in pediatric research is more equitable and reflective of the size and breadth of the pediatric patient community. The bill seeks a reasonable proportion of pediatric research grants for rare diseases or conditions.

“Senator Brown is a true champion for children’s health and his support of increasing federal funding for pediatric research is critical to improving the health of our nation’s children,” says Michael Konstan, MD, Chairman of the Department of Pediatrics at UH Rainbow Babies & Children’s Hospital and Case Western Reserve University School of Medicine. “Through our primary affiliation with Case Western Reserve University School of Medicine, Rainbow physicians are national leaders in pediatric research and rely heavily on NIH funding to advance new therapies for our young patients with conditions such as heart disease, cystic fibrosis, asthma, cancer and prematurity.”

This legislation is endorsed by the American Academy of Pediatrics, American Board of Pediatrics, American Pediatric Society, Association of Medical School Pediatric Department Chairs, Association of Pediatric Program Directors, Children’s Hospital Association, Coalition for Pediatric Medical Research, Federation of Pediatric Organizations, FightSMA, EveryLife Foundation for Rare Diseases, National Down Syndrome Society, Parent Project Muscular Dystrophy, and Society for Pediatric Research.

A bill summary is available here.

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