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.
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 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 piloted 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, 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.
Registration is open for Camp 2018 summer sessions.
Session 1 June 10-15 (adult)
Session 2 June 17-23 (7-12) - Girls Full
Session 3 June 24-30 (7-12) - Girls Full
Session 4 July 1-6 (7-12) - Girls Full
Session 5 July 8-14 (7-12) - Girls Full
Session 6 July 15-20 (teen)
Session 7 July 22-28 (teen)
Session 8 July 29- August 4 (adult)
For sessions that are full, families can still fill out an application and get on the waiting list.
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.
Registration is full for the June 9, 2018 workshop. To get on the waiting list, please contact us at 773-444-0305 or firstname.lastname@example.org.
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.
Outreach & Education
- Shriners Hospitals for Children - Chicago
- OSF HealthCare in Peoria
- Ann & Robert H. Lurie Children’s Hospital of Chicago
- Shirley Ryan AbilityLab
ISBA's statewide groups provide provide informal opportunities to network, socialize, and share information. For more information, contact us at email@example.com 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, 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.
Adult Groups provide social outings for all adults with spina bifida. For more info call 773.444.0305 or email email@example.com.
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.
Download the 2018-19 scholarship application, or contact us at firstname.lastname@example.org or 773-444-0305 to request a mailed copy.
Applications are due by mail Nov. 1, with checks issued in December.
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.
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.
ISBA's Professional Advisory Council is pleased to announce the results of its third annual Research Awards for excellence in publishing in the area of spina bifida clinical research. Prizes are awarded for the best papers by a clinician or researcher published in a peer-reviewed journal.