About Us


The Illinois Spina Bifida Association works to improve the quality of life of children, adults, and families living with spina bifida.  

About Spina Bifida

Spina bifida is one of the most common, permanently-disabling birth defects in the U.S. Spina bifida is the failure of the spine to close properly during the first month of pregnancy. More

Program Strategy

ISBA works to accomplish its mission with a three-part program strategy:

  • Promote skills development and independence;
  • Improve family resilience and access to resources through outreach, education and advocacy; and
  • Provide targeted financial assistance. More

Organizational Profile

The Illinois Spina Bifida Association is a 501(c)(3) nonprofit organization founded in 1969 by a group of dedicated parents.  Our programs are designed to work in partnership with families, service providers, volunteers, and funders throughout the state.  The organization formerly used "Spina Bifida Association of Illinois" as an alternate name.

ISBA serves more than 900 Illinois families and has outreach collaborations with spina bifida clinics at:

  • Shriners Hospitals for Children - Chicago
  • OSF HealthCare in Peoria
  • Ann & Robert H. Lurie Children’s Hospital of Chicago
  • Shirley Ryan AbilityLab




Professional Advisory Council