Programs

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 individuals and families through outreach, education and advocacy; and

• Invest in people through 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

Community-Clinic Connection
Vocational Rehabilitation
Executive Functioning Coaching
Camp Independence
GoBabyGo

Outreach, Education, & Advocacy

Diagnosis Day / New & Expectant Parent Outreach
Education, Workshops and Conferences
Clinic Outreach
Information & Referral
Community Groups & Events
Legislative Advocacy

Financial Assistance

Scholarships
Financial Assistance
Research Awards

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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.

The Community-Clinic Connection program works to achieve these goals through:

• Outreach at outpatient spina bifida clinics

• Individualized coaching and support

• Care coordination

• Info & referral

• Financial assistance

• Community events

ISBA can help Illinois individuals and families living with spina bifida with the following topics and more. Services are free.

• Finding a doctor / clinic

• Insurance

• Government Benefits

• Education

• Employment/Volunteering

• Housing

• Transportation

• Mobility

• Sports & recreation

• Financial Assistance

Have a question or need assistance? Call/text 773-444-0305 or email info@i-sba.org.

Visit ISBA’s Resources page at i-sba.org/resources for other organizations and programs.

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ISBA's Vocational Rehabilitation program promotes workforce development among teens and adults with spina bifida by:

• assessing barriers and action steps related to participating in higher education, vocational training, employment and volunteering

• increasing knowledge about vocational training resources and ABLE accounts

• providing financial wellness education so that people can work and keep benefits such as Medicaid and Supplemental Security Income (SSI)

Robert “BT” Trierweiler, LCPC, CRC is an ISBA vocational rehabilitation counselor. He leads a virtual monthly jobs group on the third Wednesday of each month. He can also talk by phone with adults with spina bifida individually to discuss employment related topics.

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. 

This program is free to Illinois adults and teens living with spina bifida. Contact 773-444-0305 or info@i-sba.org to get started. 

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ISBA offers free executive functioning coaching for Illinois residents with spina bifida from 3rd grade through adults who want to work toward personal goals and develop plans and strategies to achieve them. The training is 4 sessions over a month, one hour per week by phone or video chat. Please call 773 444-0305 or email info@i-sba.org if interested.

Learn more about ISBA’s Executive Function Coaching from a recent participant:

Camp Independence is run by the YMCA of Metro Chicago in association with the Illinois Spina Bifida Association. It is an overnight summer 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.

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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 in which children age 1-4 who have a mobility deficit receive custom electric ride-on cars that empower greater mobility and independence.

• Car delivery photos

Since 2016 ISBA has empowered more than 133 children with custom cars through GoBabyGo program partnerships with:

• Kiwanis Clubs, led by the Kiwanis Club of River Forest & Oak Park, and the Shirley Ryan AbilityLab - click here for more

• New Trier High School, the New Trier Education Foundation, and Sunrise Medical - click here for more

• SHINE Technologies, School District of Janesville, Blain’s Farm & Fleet, and NuMotion - click here for more

• NuMotion

2018 Workshop Photos

2017 Kiwanis Magazine Article

2016 Workshop News Coverage

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Outreach, Education, & Advocacy

Click here for ISBA’s interactive Diagnosis Day brochure for new and expectant parents. Click here for a print version of the brochure.

ISBA has organized a group of local spina bifida organizations throughout the country to develop and distribute Diagnosis Day brochures for new and expectant parents and clinical providers. Click here to read more about this effort.

• ISBA offers free Education Advocacy services to IL families living with spina bifida for:

  • Individualized Education Programs (IEP)

  • Individualized Family Service Plans (IFSP)

  • 504 Plans

  ISBA has a trained Parent Advocate who can offer assistance and advice in navigating the complex world of special education. The Parent Advocate can support you by:

  • attending meetings with you and your child's educational team

  • reviewing educational plans

  • advocating for the rights of your child.

  If you have any question or concern regarding your child's education, please contact ISBA to be connected with our trained Parent Advocate. Call or text 773-444-0305 or email info@i-sba.org.
  
  

• Click here for presentation slides from the 2018 ISBA Statewide Educational Conference. Videos of select presentations are also on our Facebook page

  
  

• Click here for ISBA’s YouTube Channel, which includes educational workshop videos.

ISBA serves more than 1,000 Illinois individuals with spina bifida and has outreach collaborations with outpatient clinics at:

• Shriners Children’s Chicago

• OSF HealthCare in Peoria

• Ann & Robert H. Lurie Children’s Hospital of Chicago

• Loyola Medicine

• The Margaret Hackett Family Program in CNS Congenital Anomalies at the University of Chicago

  Click here for a detailed list of Illinois hospitals and spina bifida clinics.

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We can provide information and referrals on topics related to spina bifida such as: healthcare, education, job training, housing, transportation, mobility, recreation and financial assistance. Visit our resources page, call us at 773-444-0305 or email info@i-sba.org and let us know what you're looking for. Visit i-sba.org/resources for more.

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Please join us for weekly Zoom sessions for adults (ages 18 and older) with spina bifida. Some topics include game nights, independent living skills, and common health issues among adults with spina bifida. The group typically meets on Mondays at 7:00 PM central time. If you're interested, please send an e-mail to info@i-sba.org or text 773.444.0305 to be added to the e-mail list to receive Zoom links.

Statewide Groups

ISBA's statewide groups provide informal opportunities to network, socialize, and share information. For more information, contact us at info@i-sba.org or 773.444.0305.

• Central Illinois

• Peoria

• Rockford

• Southern Illinois

• Western Illinois

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. Holiday parties will resume as COVID guidelines permit.

The Legislative Advocacy Committee is an ambitious group united by a common goal: ensuring that those living with spina bifida have every opportunity to lead successful and fulfilling lives. They actively engage in legislative initiatives to enhance the well-being of our community members. Learn more about their work.

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financial assistance

All Illinois adults living with spina bifida are eligible to apply for ISBA scholarships.

Scholarship applications are mailed in the spring to Illinois adults with spina bifida in the ISBA mailing list. Please contact us at info@i-sba.org or 773-444-0305 if you are an Illinois adult living with spina bifida and want to sign up for our mailing list.

The ISBA scholarship program is made possible in part by “A Helping Hand”.

The Illinois Spina Bifida Association is honored to award the following memorial 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 the Patrick Juris Scholarship Fund Facebook page or 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.

The Mary Mayer Scholarship is in memory of Mary Mayer, a fiercely independent individual with spina bifida. She fought for social justice and the rights of people with disabilities. She served as an advocate by example, and by providing useful and accurate information to assist others with educational, social, and financial resources to meet their needs. 

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The Kendall Gretsch Fund for Adaptive Athletes promotes sports to Illinois children and adults with spina bifida.

Kendall Gretsch, who was born with spina bifida, grew up in Downers Grove, Illinois. She attended Washington University and graduated with a degree in Biomedical Engineering. Kendall is a three-time Paralympian and four-time Paralympic gold medalist. She is a multi-sport athlete and competes in Cross Country Skiing and Biathlon during the winter and Paratriathlon in the summer. Read more about Kendall and the Fund at i-sba.org/sportsfund.

2022-2023 Report

Kendall loves the positive community aspect of sports and is inspired the most by her fellow teammates. She hopes the Kendall Gretsch Fund for Adaptive Athletes will allow more children and adults to become active and find a passion for sport. ISBA awards grants from the Fund to Illinois residents with spina bifida.

Fund applications are sent to people on ISBA’s mailing list. Contact us at 773-444-0305 or info@i-sba.org to sign up for our free mailing list.

Equipment Fund

Families may request up to $125 toward out-of-pocket costs for orthotic or other mobility equipment. To qualify, the equipment must be utilized by an Illinois resident with spina bifida. The ISBA Equipment Fund is made possible by a generous gift from “A Helping Hand”.

Medical Supplies and Services Fund

Illinois families living with spina bifida can request up to $125 toward out-of-pocket costs for spina bifida medical supplies and services. Applications are available via ISBA's mailing list. Update or add your address at info@i-sba.org or call/text 773-444-0305. Proof of SB diagnosis may be required if you are new to ISBA. There are no fees to be on the mailing list and ISBA does not have memberships. We serve all people living with SB in Illinois.

Emergency Assistance Fund

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.

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ISBA's Professional Advisory Council reviews nominations for annual Research Awards for excellence in publishing in the area of spina bifida clinical research.