Inspired by a need for change and driven by a vision for the future, leaders from various business and public interest sectors joined with leaders from the Spina Bifida Community in 1999 to establish the Spina Bifida Foundation (SBF) as a supporting organization and an active, collaborative, complementary partner of the Spina Bifida Association (SBA).
Protecting Future Generations
Prevention is crucial to ensuring the health and well-being of future generations. The message of the effectiveness of folic acid in reducing the risk of neural tube defects must reach every woman of childbearing age. Sadly, folic acid is not always a magic bullet. Some babies are born with neural tube defects despite folic acid supplementation. The Foundation is promoting research into genetic causes of Spina Bifida and supporting studies to identify environmental factors that may increase the risk of Spina Bifida.
Planning for a Future Built on Medical Advances
New doors have opened for people with Spina Bifida thanks to advancements in treatment and prevention. Yet, more must be achieved to ensure the highest quality of life for people living with this birth defect. Armed with the information emerging from a Congressionally mandated Spina Bifida research conference – which included experts in research, noted members of the medical community and representatives of the Spina Bifida Community − a viable research agenda was defined to ensure the health and well-being of those living with Spina Bifida today and those who may be affected in the future. With this blueprint in hand, the Foundation is actively pursuing funding for much-needed research that will benefit the Spina Bifida community by steering our nation toward an increased quality of life for those living with Spina Bifida.
A Force for Change on Capitol Hill
The Foundation is aggressively promoting and pursuing initiatives to advance the health and the well being of those living with Spina Bifida through advocacy and legislative efforts.
A major victory was achieved on behalf of the 70,000 Americans who live with Spina Bifida as a result of the joint efforts of SBF and SBA when the National Spina Bifida Program was established at the Centers for Disease Control and Prevention’s (CDC) National Center for Birth Defects and Developmental Disabilities (NCBDDD) in February 2002.
For the first time, our nation now has a comprehensive, federally funded programmatic initiative to address primary prevention and begin vital work to improve quality of life and reduce the health complications for those affected. The Foundation will continue to pursue funding for the National Spina Bifida Program and the NCBDDD to ensure that these entities have the resources necessary to reduce and prevent suffering from Spina Bifida.
Working Together for a Better Future
Working together SBA and SBF will secure a better life for individuals and families affected by Spina Bifida. They deserve nothing less.