A bill recently signed into law by President Barack Obama includes legislation penned by Congresswoman Lois Capps.
The bipartisan-approved bill known as PREEMIE, or the Prematurity Research Expansion and Education for Mothers Who Deliver Infants Early Reauthorization Act, became law the day before Thanksgiving.
Capps’s contribution to the bill is the National Pediatric Research Network (NPRN) Act. It authorizes the National Institutes of Health to research pediatric diseases like spinal muscular atrophy (SMA), a genetic mutation with no known cure.
In a press release, Capps expressed her appreciation of Congress. “I am so pleased that even in these partisan times, members of Congress have been able to put aside our differences and come together to pass important measures into law on a bipartisan basis,” she said.
Capps introduced the NPRN Act to the House this past January. The Congressional Record indicates it passed with a total of 375 votes from all but equal numbers of both Democrats and Republicans. Only 27 Representatives voted against it.
The Senate received it in February and attached it to PREEMIE, which passed in September. The press release went on to say that the law “will strengthen pediatric disease research, promoting improved diagnostics, cures and treatments for children, especially those battling rare and complex diseases.”
One such child is 6-year-old Gwendolyn Strong of Santa Barbara. She’s one of the many children in the country who live with SMA, sometimes called childhood Lou Gehrig’s disease. The Santa Barbara Independent shared her story here.
Gwendolyn’s parents, Bill and Victoria Strong, founded the Gwendolyn Strong Foundation. Bill was also quoted in the release. “Thank you to Congresswoman Lois Capps and her staff for their tireless work on this bill and for continuing to champion pediatric health, and specifically pediatric rare disease research, on Capitol Hill.”
According to the World Health Organization, an estimated 15 million babies are born preterm every year. Of that annual average, more than one million die. According to the March of Dimes, one of every nine U.S. infants is born preterm.