The Illinois Spina Bifida Association works to improve the quality of life of individuals and families living with spina bifida.
ISBA works to accomplish its mission with a three-part program strategy:
- Promote skills development and independence;
- Support families through outreach, education and advocacy; and
- Fund scholarships, medical equipment, research and emergency help.
For more information or to participate in these programs, please call us at (773) 444-0305 or get in touch with us from our contact page.Upcoming Events
Skills & Independence
Outreach & Education
Skills & Independence
The Illinois Spina Bifida Association's Community-Clinic Connection program serves children, adults, and families living with spina bifida. The program works to:
- Identify resource needs of individuals/families and refer them to appropriate services;
- Support and improve family resilience by increasing social connectedness and reducing stress and isolation; and
- Identify and support social functioning and skill development goals of individuals/families.
Camp Independence is run by the YMCA of Metro Chicago in association with the Illinois Spina Bifida Association. It is an overnight camp designed especially for people with spina bifida, age 7 through adult. Campers are encouraged to learn self-care skills, develop new friendships, and try new adaptive sports.
As part of the Camp Independence program, ISBA supports independence programming and research conducted by the Chicago Healthy Adolescents Transition Study (C.H.A.T.S.). Dr. Grayson Holmbeck, a clinical psychologist and professor at Loyola University Chicago, is the principal investigator of this study. In research conducted by C.H.A.T.S. team members, parents and campers reported improvements in campers’ goal attainment, management of health-related self-care, and independence.
There is a Facebook group for parents interested in Camp Independence here: Camp Independence Parents Facebook Group
For more information, call 847-546-8086. *Registration for summer 2019 is now open.* Go to Camp Independence for info and registration forms.
GoBabyGo is a program of the University of Delaware committed to all people exploring their world via independent mobility. The Illinois Spina Bifida Association is proud to provide GoBabyGo workshops with statewide Kiwanis Clubs in which children age 1-5 receive custom electric ride-on cars that empower greater mobility and independence.
ISBA's fourth annual GoBabyGo workshop will be held on June 1, 2019, thanks to statewide Kiwanis Clubs, led by the Kiwanis Club of River Forest and Oak Park, the Shirley Ryan AbilityLab, and Shriners Hospitals for Children - Chicago.
ISBA's new ABLE Savers program promotes workforce development among adults with spina bifida by pairing adults with community social workers to:
- assess barriers and action steps related to participating in vocational training and employment;
- increase knowledge about vocational training resources and ABLE accounts; and
- to facilitate linkages to ABLE accounts and advocates specializing in Medicaid and Supplemental Security Income (SSI).
ABLE accounts help people with disabilities to save while preserving their SSI and Medicaid. The Achieving a Better Life Experience Act (ABLE), passed by Congress and signed into law in 2014, allows for people with disabilities and their families to put their money in an ABLE account without counting against their asset limits for federally means-tested benefits.
If you are an Illinois adult living with spina bifida, contact 773-444-0305 or email@example.com to get started with this free program.
Outreach & Education
The 2018 ISBA Statewide Educational Conference was held on Saturday, July 21st at Morton College in Cicero, sponsored by Hollister. Click here for slides from select presentations. Videos of select presentations are also on our Facebook page.
- Shriners Hospitals for Children - Chicago
- OSF HealthCare in Peoria
- Ann & Robert H. Lurie Children’s Hospital of Chicago
- Shirley Ryan AbilityLab
- Loyola Medicine
ISBA's statewide groups provide provide informal opportunities to network, socialize, and share information. For more information, contact us at firstname.lastname@example.org or 773.444.0305.
- Central Illinois Support Group
- Peoria Networking Group - next meeting
- Rockford Group
- Southern Illinois Group
- Western Illinois Group
Play Dates combine an informational and networking session for parents with structured play activities for children with spina bifida and their siblings.
Children have an opportunity to play in a safe and accessible environment while allowing parents to network, share information, learn about resources, and hear speakers on relevant topics.
Visit our Events page for upcoming events.
For more info contact us at (773) 444-0305 or email@example.com.
Adult Groups provide social outings for all adults with spina bifida. For more info call 773.444.0305 or email firstname.lastname@example.org.
Holiday Parties are a winter favorite for the families of ISBA, with events in Chicagoland and statewide support group locations. All adults and children with spina bifida, and their parents and siblings are invited to attend. Thanks to everyone who joined us in 2018.
The ISBA scholarship program is made possible in part by “A Helping Hand”.
The Illinois Spina Bifida Association is honored to award 2 special scholarships:
The Patrick Juris Scholarship, awarded to a student with spina bifida preparing for a field of service that helps others. Patrick’s legacy as a friend, leader, and advocate will be remembered for years to come. To learn more about Patrick, visit www.patrickjurisscholarshipfund.org.
The Valiant Scholarship is awarded to a student who displays outstanding leadership, good will toward those less fortunate, and a dedication to making a difference. The scholarship is named after the late Bill Valiant, who with his wife Bonnie was instrumental in leading and growing ISBA for more than 25 years.
Illinois residents with spina bifida can apply for emergency financial assistance up to $500. Money is paid directly to the vendor/supplier, and documentation of need is required. Call 773-444-0305 for more information.
ISBA's Professional Advisory Council is pleased to announce the results of its fourth annual Research Awards for excellence in publishing in the area of spina bifida clinical research.