Spina Bifida Advocacy

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 166,000 Americans who live with the challenges of Spina Bifida each day.

SBA’s Grassroots Advocacy Program

Grassroots advocacy is at the heart of our advocacy efforts . Through grassroots efforts, our Community is empowered to take real action that can make a tangible difference for everyone who lives with the challenges of Spina Bifida.

Members of the Spina Bifida Community can help our grassroots efforts by becoming a part of the SPEAK for Spina Bifida program. SPEAK stands for Spina Bifida Policy, Education, Advocacy, and Knowledge. Participants in the program seek to educate and help shape public policy related to Spina Bifida through grassroots efforts such as writing a letter to their Member of Congress, attending a town hall meeting in their home town, signing up to receive SBA’s online Action Alerts, or visiting with their representatives at home or in Washington, DC. Sign up today to find out more about SPEAK!

For more information on Spina Bifida grassroots advocacy program and tools that you can use at home to help, visit the SBA Grassroots Advocacy Web site at www.spinabifidaadvocacy.org. And don’t forget to visit the Legislative Action Center to sign up to receive online Advocacy Alerts!

Work on Capitol Hill

SBA works each year on Capitol Hill to gain support for the National Spina Bifida Program (housed at the Centers for Disease Control and Prevention) and other initiatives and programs of great importance to the SB Community.

Efforts for 2011 include:

• 2011 Public Policy Agenda
• 2010 Dietary Guidelines Advisory Committee Written Comments

Issue briefs and past public policy agendas can be viewed on the SBA Grassroots Advocacy Web site at www.spinabifidaadvocacy.org.

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 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. Senate leaders are Senator Chris Dodd (D-CT) and Senator Roger Wicker (R-MS).

Want to see if your Member of Congress is part of the SB Caucus? Review the roster or look up your Member on the SBA Grassroots Advocacy Web site at www.spinabifidaadvocacy.org.