SB-Coalition History

The Spina Bifida Coalition is a 501(c)3 non-profit formed in 1973 by parents and professionals caring for children with spina bifida.

Many of the original founders of the Spina Bifida Coalition were also framers of the national Spina Bifida Association and influenced early efforts in advocating for quality healthcare for children with spina bifida, multi-disciplinary clinics, Baby Doe legislation, and AFP (alpha fetoprotein) screening.

In 2013, we became an independent organization separate from the national Spina Bifida Association and changed our name to the Spina Bifida Coalition of Cincinnati, introducing a new logo and brand at the same time. This change allows us to concentrate more fully on helping people who are impacted by spina bifida in this region. August of 2021 brought further change to SBCC. Eastern Ohio and the state of West Virginia were identified by the board of directors as underserved areas that would benefit from the support of the organization. The Center for Spina Bifida at Cincinnati Children’s Hospital Medical Center shared that 21% of their patients traveled from West Virginia to Cincinnati for their care. A task force was formed, and a Memorandum of Understanding was drafted for a trial period of two years. The agreement was accepted by the board and task force members, which increased the service area of the organization from 17 counties to a total of 85 counties. In 2022, the name was officially changed to the Spina Bifida Coalition to reflect the service area expansion beyond Greater Cincinnati.

The development of the shunt in the 1950’s, along with advanced surgical procedures and diagnostic tools, dramatically increased both the life span and quality of life for individuals born with spina bifida. Passionate professionals and families have continued to advocate for quality care in multi-disciplinary clinics to assure healthy outcomes for their children. As the children of the 1970’s have matured into adults, the need for specialized healthcare continues, in order to preserve function and minimize the affects of aging in adults with this complicated disability.

This organization has a long history of parent/professional partnership and is committed to improving outcomes for adults and children with spina bifida. The SB-Coalition continues to have dedicated parents, professionals and individuals with SB participate at all levels in the organization and be advocates for the next generation.