eInsights - April 1, 2008

National Spina Bifida Program

In just a few short years, the National Spina Bifida Program (NSBP), created by Congress in the Fiscal Year 2003, has developed an impressive array of programs, initiatives, and resources to support and empower patients, families, and health care providers with the information they need to prevent secondary effects and complications of Spina Bifida and improve quality-of-life for individuals and families impacted by this birth defect.

In order for the Program to continue its vital work, funding must be increased to $7 million in Fiscal Year 2009. This year, the Spina Bifida Congressional Caucus Co-Chairs, Representatives Bart Stupak (D-MI) and Chris Smith (R-NJ), joined together to lead the charge to boost funding for the Program circulating a “Dear Colleague” letter requesting $7 million for the NSBP in Fiscal Year 2009.

The letter, which urged their fellow Representatives to join them in sending correspondence to their colleagues who determine federal funding, was further promoted by the Spina Bifida Association (SBA) which executed a call for needed signatories through an Advocacy Alert sent to the Spina Bifida Community. Over 750 Community members took action, a very strong response over just a few days.

SBA continues to advocate for vital resources for the National Spina Bifida Program. Legislators who have joined the Congressional Spina Bifida Caucus remain vital partners in this effort. Visit SBA's online Advocacy Center to ensure that your Congressional Representative is a member of the Congressional Spina Bifida Caucus or to encourage them to join.