Teal on the Hill - Increase Funding for the National Spina Bifida Program

THE ISSUE: The only place in the federal government specifically studying this complex condition for children and adults is the NCBDDD at the CDC through the National Spina Bifida Patient Registry, the Spina Bifida Collaborative Care Network, and specific research projects.

THE ASK: Support a $9 million budget for the National Spina Bifida Program. The program is currently funded at $7 million. With increased funding, we could:

  • Fund research on sudden unexplained death among adults in the Spina Bifida community
  • Develop studies on social determinants of health within the Spina Bifida registry
  • Create a protocol to improve the health outcomes of children who have Spina Bifida with hydrocephalus
  • Research barriers to transition from pediatrics to adult care
  • Analyze potential models for adult care to determine impacts on individual health outcomes
  • Study the effects of adults living with Spina Bifida