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;
- Improve family resilience and access to resources through outreach, education and advocacy; and
- Provide targeted financial assistance.
- Shriners Hospitals for Children - Chicago
- OSF HealthCare in Peoria
- Ann & Robert H. Lurie Children’s Hospital of Chicago
- Shirley Ryan AbilityLab
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.
Skills & Independence
Outreach & Education
Skills & Independence
ISBA’s new Community-Clinic Connection program provides families living with spina bifida individualized support and coaching services from a social worker who can meet at their homes during the day, evening, or weekend. The ISBA social worker's job is to help families get needed information and resources, connect with other families, encourage skills development and goals, and coordinate with their SB clinic team. Through these activities, the program works to increase family resilience, health quality of life, and the independence of children and adults living with spina bifida.
ISBA is proud to be piloting the Community-Clinic Connection program in Central Illinois in partnership with OSF HealthCare.
This program has been made possible by generous donations from:
- The Fritz and Doris S. Reuling Charitable Fund, the Fontaine Earle Fund, and the Pete and Mildred Donis Charitable Fund of the
Community Foundation of Central Illinois
- Illinois Prairie Community Foundation - IPCF Annual Campaign Fund
- Central Illinois ISBA families
Community-Clinic Connection has now expanded to Chicagoland in collaboration with Shriners Hospitals for Children - Chicago thanks to generous donations from:
- McHenry County Community Foundation
- Chicagoland ISBA 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, the Illinois Spina Bifida Association 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.
Summer registration has begun. Click here for more info and online registration and financial assistance forms.There is a Facebook group for parents interested in Camp Independence here: Camp Independence Parents Facebook Group
For more information, call 847-546-8086.
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 will be hosting its third annual GoBabyGo workshop on June 9, 2018, thanks to the generosity of statewide Kiwanis Clubs, led by the Kiwanis Club of River Forest and Oak Park, and volunteer engineers and clinicians from the Shirley Ryan AbilityLab and Shriners Hospitals for Children - Chicago.
Outreach & Education
Central Illinois Support Group
The Central Illinois Support Group is a group of parents, kids, and adults with spina bifida, who meet at 6:45pm on the third Thursday of every other month, except in the summertime. The group typically meets at at the OSF-College Ave meeting room, 1701 E. College Avenue, Bloomington - use the entrance at the back of the building by Convenient Care. The format varies from speakers to informal networking.For more information about this group, email firstname.lastname@example.org or call 773.444.0305.
Peoria Networking Group
Families and individuals living with spina bifida are invited to join us at the Peoria Networking Group.
The networking group meets on the second Monday of each month at the Children's Hospital of Illinois, 420 N.E. Glen Oak, Peoria. Join us on the first floor of the Hillcrest building, pizza lunch provided.
There will be a networking lunch on Monday, March 12th at noon.
RSVP to 773-444-0305 or email@example.com.
Rockford Support Group
If you're interested in meeting other individuals and families living with spina bifida in the Rockford area, contact us at 773-444-0305 or firstname.lastname@example.org.
Southern Illinois Support Group
If you're interested in meeting other individuals and families living with spina bifida in Southern Illinois, contact us at 773-444-0305 or email@example.com.
Western Illinois Support Group
If you're interested in meeting other individuals and families living with spina bifida in Western Illinois, contact us at 773-444-0305 or firstname.lastname@example.org.
Chicagoland Support Group
Families and individuals living with Spina Bifida are invited to join us at the Chicagoland Support Group.
For more information, contact 773.444.0305 or email@example.com
Play Dates combine an informational and networking session for parents with structured play activities for children with spina bifida, their siblings and their parents.
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.
Halloween Play Date at Shriners Hospitals for Children - Chicago, Sunday October 21, 2018.Visit our Events page for more info.
To RSVP, contact us at (773) 444-0305 or firstname.lastname@example.org.
Chicago and Central IL Adult Groups provide social outings for all adults with spina bifida.
Upcoming groups: Pizza making party at Whole Foods Lincoln Park in Chicago on Saturday, April 7, and Chicagoland Adaptive Climbing Expo at Maggie Daley Park in Chicago on Saturday, May 12. For more info or to RSVP, email email@example.com or call 773-444-0305. For details, click here for our Events Page.
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.
Illinois adults with spina bifida are invited to apply for ISBA's educational scholarships. Applications for 2018-2019 will be available later in 2018.
The ISBA scholarship program is made possible in part by “A Helping Hand”.
The Illinois Spina Bifida Association is honored to host 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.
Click here for the 2018 ISBA Equipment Fund Application.
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.