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:
1. Promote skills development and independence;
2. Improve family resilience and access to resources through networks of outreach and education; and
3. 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.
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 a grant 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, as well as donations from Central Illinois 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.Watch a video about camp here: Camp Independence Video
There is a Facebook group for parents interested in Camp Independence here: Camp Independence Parents Facebook Group
Registration for Summer 2017 sessions is now open.
Session 1 - June 11 - 16, Adults - 20 years old and up
Session 2 - June 18 - June 24, 7-13 years old
Session 3 - June 25 - July 1, 7-13 years old
Session 4 - July 2 - July 7, 7-13 years old
Session 5 - July 9 - July 15, 7-13 year olds
Session 6 - July 16 - July 21, 14-19 years old
Session 7 - July 23 - July 29, 14-19 years old
Session 8 - July 30 - August 5, Adults - 20 years old and up
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 2-4 receive custom electric ride-on cars that empower greater mobility and independence.
Register now for our next GoBabyGo Workshop, June 10, 2017 at Shriners Hospitals for Children-Chicago.
ISBA hosted a GoBabyGo workshop on July 30, 2016, 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 Rehabilitation Institute of Chicago 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.
The next meeting will be on May 18, 2017. The May group will feature Aimee Look, telling us about the adult spina bifida clinic at the new Shirley Ryan AbilityLab (formerly RIC), and her role as Resource and Outreach Manager at ISBA.For more information about this group, email Lynn at firstname.lastname@example.org.
Peoria Support Group
Families and individuals living with Spina Bifida are invited to join us at the Peoria Support Group.
The support group meets on the second Monday of each month at the Children's Hospital of Illinois, 420 N.E. Glen Oak, Suite 201, Peoria.
The next support group will meet on Monday, May 8th 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
Families and individuals living with Spina Bifida are invited to join us at the Southern Illinois Support Group.
For more information, contact 773-444-0305 or email@example.com.
Western Illinois Support Group
Families and individuals living with Spina Bifida are invited to join us at the Western Illinois Support Group.
For more info contact 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 with other parents, share information, learn about resources, and hear speakers on relevant topics.
For more info contact us at (773) 444-0305 or firstname.lastname@example.org.
Young Ladies Groups provide young ladies with Spina Bifida, age 10-14, the opportunity to meet, socialize, and talk with women with SB. At the same time, their mothers have the opportunity to meet and talk with a social worker and other women with SB.
The next Young Ladies Group will be a pizza making party:
When: Saturday, April 29, 12-2pm
Where: Whole Foods Market Lincoln Park - 1550 N. Kingsbury St., Chicago, IL (The store is south of North Ave. and west of Halsted St. The parking garage is free. Park on the river side of the garage and take the elevator to the mezzanine level of the store.)
What: Girls will make and eat pizza and cookies. Women with spina bifida and counselor Jenny Nilsen, LPC will interact with the girls during the activity. Moms will have a chance to connect with women with spina bifida and social worker Rebecca Boudos, LCSW.
Space is limited. RSVP required to 773.444.0305 or email@example.com by Wednesday, April 26th. Please let us know about any food allergies.
Chicago and Central IL Adult Groups provide social outings for all adults with Spina Bifida.
The next group will take place on Saturday, May 13th, 1-4pm.
What: Chicagoland Adaptive Climbing Expo - Come try adaptive climbing for free with Adaptive Adventures and Synergy Adaptive Athletics.
Where: Maggie Daley Park Fieldhouse - 337 E. Randolph St., Chicago
Who: Adults with Spina Bifida, regardless of where you live.
Details: Come learn how to climb or just hang out with us, watch the climbers, and enjoy the afternoon. All skill/ability levels welcome. Adaptive equipment and support provided. This is an outdoor event. Event fee will be paid for by ISBA for those who RSVP. There are some event forms that all participants who are climbing will need to fill out.
RSVP required by Wednesday, May 10, space is limited, email firstname.lastname@example.org or call 773-444-0305.
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.
The 2017 Chicagoland Holiday Party will be held on Saturday, December 2nd at Conyers Learning Academy in Rolling Meadows.
Thank you to our March 2016 Statewide Educational Conference presenters and participants.
ISBA regularly partners with adaptive sports organizations to provide introductory events for a variety of sports, including basketball, rock climbing, kayaking, softball, and more.
Come try adaptive tennis on Saturday, September 16th at 1pm with ISBA and Northwest Special Recreation Association. All levels of ability are welcome.
Who: Adults and children living with spina bifida & their immediate families.
Where: Hanover Park Community Center - 1919 Walnut Ave, Hanover Park, IL.
More info to come.
Visit our Resources page for a listing of adaptive sports organizations.
Illinois adults with Spina Bifida are invited to apply for ISBA's educational scholarships. Applications for the 2017-2018 school year will be available in May of 2017.
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. To learn more, visit patrickjurisscholarshipfund.org.
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.