SBA actively engages in advocacy efforts to raise awareness about Spina Bifida with our nation’s lawmakers. Through a process of education, SBA, its partners, and its volunteers work together to lay the groundwork for a better tomorrow for the over 177,000 Americans who live with the challenges of Spina Bifida each day.

This helpful presentation (PPT) may give you some background on Spina Bifida advocacy efforts.

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Tips & Tools

SBA & Congress

Members of Congress are elected officials at the national level who are entrusted to represent the interests of their constituents. On average, each Member of the U.S. House of Representatives represents 650,000 Americans while Members of the U.S. Senate represent the entire population of their state.

Your voice, and your vote, make an incredible impact on your representative. Each year families, individuals with Spina Bifida, and medical professionals representing our community share their personal, heartfelt stories with policy makers. These stories help Spina Bifida stand out over the causes that are brought before Congress every year and help to gain your Member’s support on issues that affect our Community.

Target List
The following committees, and the Members of Congress who serve on them, are especially important decision makers on issues that affect the Spina Bifida Community:

Congressional Spina Bifida Caucus
Congressional caucuses are formally organized and recognized entities formed by Members of Congress to direct focus and attention to specific issues. Separate and distinct from congressional committees, caucuses are neither restricted in membership nor tied to the political makeup in the Congress so any Member can join.

On May 15, 2003, SBA Congressional Champion Congressman Chris Smith (R-NJ), along with his colleague and SBA Congressional Champion, retired Congressman Bart Stupak (D-MI), announced the formation of the Spina Bifida Caucus.

In 2009, the membership of the Spina Bifida Caucus was expanded to include the Senate. The Senate leaders were now-retired Senator Chris Dodd (D-CT) and Senator Roger Wicker (R-MS).

Legislative Action Center

When you advocate on behalf of Spina Bifida and SBA, you are not acting alone – you are joining a community of passionate individuals who are dedicated to improving the quality of life for those who live with this challenging birth defect and are dedicated to raising awareness about Spina Bifida. Together, we are a strong voice on the road to making Spina Bifida a national priority.

Join SBA’s Action Alerts Advocates List
Sign up for Action Alerts. You will automatically be contacted when your help is needed on legislative issues that impact the Spina Bifida Community.