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Organization Information

Illinois Spina Bifida Association


We work to improve the quality of life of individuals and families living with spina bifida by promoting skills development and independence, family outreach and advocacy, and providing targeted financial assistance.

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Success Story

From a Mom: The Illinois Spina Bifida Association (ISBA) is not only a network of support, but also an advocacy group working to make Spina Bifida manageable. ISBA regularly hosts educational seminars and conferences to keep families up to date on the most current research.

They host social events throughout the year that help people of all ages connect with others who have been impacted by Spina Bifida. These events offer an opportunity for all to come together and celebrate the dedication, perseverance, and bravery of those living with Spina Bifida.

ISBA provides funds to those in need for medical and mobility equipment, adaptive technology, emergency situations, and Camp and academic scholarships. ISBA also has community social workers and outpatient clinic partnerships so that families can get coordinated access to services and resources statewide. If anyone with Spina Bifida faces a challenge, ISBA is there 100% to wholeheartedly help them and ensure they have the means in order to live a successful and productive life.

The best way to demonstrate what the ISBA really means to every person who has been impacted by this birth defect is rather simple and direct. When families receive the Spina Bifida diagnosis and do not have up to date information about the condition, it can take our hope away. The ISBA not only returns our hope back; they carry us when we need it and allow all of us to look forward to the future as every parent wants. The ISBA has had a profound impact on my family guiding us after our diagnosis, providing support during a month-long hospital stay post-birth, and continuously promoting inclusion and advocacy.