Brown Announces Bill To Enhance Pediatric Research; Joins Dublin Family Battling Rare Disease

Brown is Joined by Dublin Teenager Who Suffers from Rare Disease, Doctors Told Her Family She Would Not live Past the Age of Two

Although Children Compose 20 Percent of the U.S. Population, Only About Five-10 Percent of Federal Research Dollars are Directed to Pediatrics


COLUMBUS, OH – One week before Madison Reed, a Dublin teenager who is living with Spinal Muscular Atrophy (SMA) turns 16, U.S. Sen. Sherrod Brown (D-OH) joined the Reed family to call for increased funding for pediatric medical research. Doctors predicted that Madison, who was diagnosed in infancy with SMA, would not live past the age of two.    

“Ohio is fortunate to have top-tier hospitals like Nationwide Children’s– especially for families, like the Reeds, 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 introduced the National Pediatric Research Network Act, to improve and increase investments into pediatric research—especially research on pediatric rare diseases, like SMA and Duchenne’s Muscular Dystrophy.”

“While each rare disease or disorder affects a small patient population, it is important to note that 7,000 rare diseases affect a combined 30 million Americans—15 million of whom are children, like Madison,” Brown continued. “My bill can help increase our understanding of pediatric diseases, improve treatment and therapies, and create better health outcomes for our nation’s children.”

Although children make up about 20 percent of the U.S. population, the National Institutes of Health (NIH) dedicates only about five to 10 percent of its annual research budget to pediatrics. At Nationwide Children’s Hospital, 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 like Madison’s.

“This bipartisan legislation will use a proven national network model to strengthen the effectiveness of pediatric medical research that is vital to improving the health of our nation’s children, especially those with rare and incurable disease,” Dr. John Barnard, President of The Research Institute at Nationwide Children’s Hospital, said. “We thank Senator Brown for his continued dedication to pediatric biomedical research and to finding new treatments for diseases in children.”


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.