TOLEDO, OH – Alongside a Northwest Ohio family whose daughter is living with cystic fibrosis (CF), U.S. Sen. Sherrod Brown (D-OH) visited ProMedica Toledo Children’s Hospital to unveil new legislation aimed at designating more funding for pediatric medical research. Brown was joined by fifteen-year-old Rachel Burns who lives with CF and had to be admitted to the hospital last week due to complications with her condition. Despite having CF, she still manages to balance her daily 4 a.m. medical regimen with softball and volleyball practice and remains an honor student at Springfield High School.
“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 Toledo Children’s– especially for families like the Burns who have the support and resources they need when a child has a serious disease,” 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.”
Brown announced plans to introduce this bipartisan legislation to ensure a better-coordinated NIH pediatric research investment that will produce a greater return on our investment and help the children of today—and tomorrow— overcome numerous devastating diseases and conditions. The bill seeks a reasonable proportion of pediatric research grants for rare diseases or conditions.
“Because of pediatric research, Cystic Fibrosis patients have improved their survival by 30 years and we are now close to finding medications that may totally control their disease,” said Dr. Pierre Vauthy, Director of Pediatric Pulmonary Medicine at ProMedica Toledo Children’s Hospital. “By increasing funding support through Senator Brown’s legislation we should be able to control many of these diseases.”
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.