We’re grateful to all the donors, volunteers, sponsors, and attendees who made the 2025 Chicagoland Bowl-a-Thon a striking success! Your energy, enthusiasm, and generosity made it a day to remember!

One of the most important laws for students with disabilities is the Individuals with Disabilities Education Act (IDEA). This federal law ensures that children with disabilities receive a free and appropriate public education that meets their unique needs. It also funds early intervention services for infants and toddlers with developmental delays and provides grants to improve educational opportunities for students with disabilities.

However, recent federal actions including an Executive Order affecting the Department of Education could impact how these programs are administered.

Many Illinois residents with spina bifida, including a majority of adults, rely on Medicaid for essential medical care and long-term services and supports. These services help individuals maintain their health, independence, and quality of life.

As federal budget discussions continue, the Illinois Spina Bifida Association anticipates potential funding reductions that could impact access to critical care and support services.

We encourage ISBA families and supporters to reach out to their Representative in Congress.

The Illinois Spina Bifida Association (ISBA) opposes SB009 and HB1328, commonly known as the End-of-Life Options Act. This legislation would allow Illinois doctors to prescribe lethal medication to people diagnosed as having six months or less to live.

Access Living, a Chicago disability advocacy organization, opposes physician-assisted suicide, which involves a physician facilitating a patient's death by providing the necessary means and/or information.

For 10-year-old Ryan, navigating school and daily life with spina bifida has brought its own unique challenges. His mom, Christine, immediately thought of Ryan when she heard about ISBA's Executive Functioning (EF) Coaching Program. She noticed he was struggling in school, especially with math, working memory, organization, task initiation, and time management, and she knew that help with executive functioning might be the key. For Ryan, the impact has been life-changing. Here’s how you can help.

ISBA's Professional Advisory Council (PAC) is pleased to announce the winners of its Annual Research Awards for excellence in publishing in the area of spina bifida clinical research.

We are thrilled to introduce the Illinois Spina Bifida Association’s new quarterly newsletter, Digital Digest. This publication is designed to keep you informed, engaged, and connected with the latest news, events, and resources from ISBA.

Chris Krohe, from Beardstown, IL, successfully led the advocacy for a ban on latex gloves. His motivation stemmed from personal experiences of severe latex allergies. Despite a few setbacks, Krohe's dedication and collaborative efforts led to the passage of the Latex Glove Ban Act in Illinois.

Like most in the spina bifida community, Megan Lenhart has faced many challenges due to her myelomeningocele. At birth, her parents were told she would never walk. Potential institutionalization was discussed. Expect multiple surgeries. There would be challenges galore. A fulfilling life was going to be a big if.

Our Legislative Advocacy Committee's ongoing efforts have resulted in families now being able to request a second disability placard for their vehicles.

Watch CBS2 Chicago’s coverage of the Illinois Spina Bifida Association and the Illinois proclamation of Spina Bifida Awareness Day.

Congratulations to the 2021-2022 ISBA scholarship winners! The ISBA scholarship program is made possible in part by the Patrick Juris Scholarship Fund and "A Helping Hand". 

Thanks to a generous grant from the Illinois Prairie Community Foundation, the Illinois Spina Bifida Association (ISBA) has provided funds to people living with spina bifida to help them with expenses during hospital stays. Residents of McLean, DeWitt, Logan, and Livingston Counties received ISBA funds.

Thanks to a generous grant from the Community Foundation for the Land of Lincoln, the Illinois Spina Bifida Association (ISBA) has provided funds to people living with spina bifida to help them with expenses during hospital stays. Residents of Cass, Logan, Montgomery, Morgan, and Sangamon Counties received ISBA funds.

In Ethiopia, infection is a deadly risk to children with spina bifida due to lack of medical supplies. Thanks to our wonderful donors and program partners, ISBA is shipping 14,000 catheters to hospitals in Ethiopia via the ReachAnother Foundation. There, people with spina bifida will receive these life-saving supplies.

Click below to watch a short TV piece from NBC 5 Chicago and learn how our wonderful program partners and donors helped make this happen.

Learn more about how Ethan Burkhart, a college student athlete with spina bifida, achieved academic success with executive functioning coaching from the Illinois Spina Bifida Association.

Click here to listen to the latest Special Fathers Network Dad to Dad Podcast, featuring Jeremy Meinhardt, ISBA Board Chair. Jeremy and his wife Meg have two children, Beck, 15 and Nellie, 12, who has spina bifida.

Want to become a mentor or mentee father? Click here for more info.

An ISBA family had a situation.

Because of COVID, their work hours had been cut and they fell behind on their water bill. Mary had always taken care of Daniel, their young adult son with SB. She had applied to be his personal care assistant, but the application was stuck.

Read more about how ISBA helped this family thanks to Global Genes Continuity of Care and Financial Advocacy RARE Patient Impact Grants.

Two-year-old, K.C., was all smiles when he was one of five Belleville-area kids with spina bifida to receive a GoBabyGo car last fall. K.C’s parents exclaimed, “his laughter and smiles say it all. Now we just need to teach him how to not run us over!”

Parents receiving their child’s spina bifida diagnosis in 15 states will now have up to date information about medical care and local family support networks and organizations, thanks to an American Legion Child Welfare Foundation grant to the Illinois Spina Bifida Association.

Thanks to Windy City Corvettes for kick-starting ISBA’s SB All-Stars fundraising campaign with a wonderful $10,000 matching gift!

The Windy City Corvettes charity committee, board, and membership are champions for people living with spina bifida.

A new survey by the Illinois Spina Bifida Association (ISBA) of Illinois families living with spina bifida has found only 54 percent have private insurance and not quite two-thirds receive some form of government assistance.

“Clear the runway.” That’s how Maureen Wells described her family’s approach to her independence as a child. After a career as a special education teacher, she’s still not done helping to clear the runway for others.

It was a powerful moment when 48-year-old met three-year-old and her parents. “All of my life I thought I was the only one. I knew nobody else like me,” says Wendy Chasteen. Then last fall she met Zaela Bell. It was the first time Wendy, age 48, ever met somebody with spina bifida, let alone with the same level spinal lesion she has.

Luis Carrizoza is the proud father of nine-year-old Luz Amelia, who goes by the name of Luz. She’s a happy and “awesome” Chicago fourth grader, who has had surgeries to close her back, implant and revise a shunt, release her tethered spinal cord, remove adenoids and insert ear tubes. She’s also had MACE and Mitrofanoff surgeries.