The mission of the Spina Bifida Association is build a better and brighter future for all those affected by Spina Bifida. We work to make a practical, positive difference every day, helping to improve care so you can enjoy life to the fullest and expect a better future. We are able to live our mission thanks to our largest national annual fundraising event, Walk-N-Roll for Spina Bifida.
Putting the Mission into Action:
- SBA Chapters: SBA Chapters supports and connects communities within their chapter area. We put our mission into action in tangible ways—providing resources, aid, connections, and a strong voice on your behalf.
- Build Valuable Community Networks: We host events that combine fun with peer-to- peer support, build a great social network, and create opportunities for sharing experiences. You can attend events such as a holiday party, monthly meetups, and more.
- Provide Special Assistance Grants: We provide special assistance grants that help our community with some of the challenges and demands that come from living with Spina Bifida. Our grants assist families with everything from wheelchair repair to helping cover unexpected out-of-pocket medical expenses related to Spina Bifida care.
- Empower Local Leaders: You can support your community by getting involved at the local level. Every year we host training for Chapter Advisory Council Members and send representatives to the National Leadership Institute.
- Advance Advocacy: Together we advocate for bills to improve access to care at your state level. For example, in Michigan we are working on a bill requiring doctors to provide up-to-date, accurate information to expecting parents at the time of diagnosis.
- Expand Awareness and Outreach: We constantly work to be a powerful voice for increasing awareness of Spina Bifida. We participate in the national Spina Bifida Awareness Month campaign, partner with other key organizations to expand public awareness, and present welcome baskets to parents of newborns with Spina Bifida.
- Research: SBA led the development of 25 Health Care Guidelines, designed to help guide those with Spina Bifida to get the best care throughout their lives.
- Advocacy: In 2022, we had over 86 meetings with memebers of Congress to lobby for continued Spina Bifida funding, research, insurance benefits, and more.
- Education: We offer in-person and online education programs featuring medical experts, parents, and adults with Spina Bifida, covering topics such as skin health, becoming a parent, and financial planning.
- Support: Our National Resource Center provides information and referrals to over 2,000 English and Spanish inquiries each year.