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!
Read moreStatement on the Individuals with Disabilities Education Act (IDEA)
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.
Read moreStatement on Medicaid from the Illinois Spina Bifida Association
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.
Read moreISBA Statement on SB009 and HB1328
*Update 5/29/25: SB009 has been reintroduced as SB1950 HFA2.
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.
Read moreHelp Empower Kids Like Ryan to Reach Their Full Potential!
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.
Read moreAnnual Spina Bifida Research Award Winners Announced
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.
Read moreWelcome to ISBA’s Digital Digest Quarterly Newsletter!
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.
Read moreChris Krohe: The Man Behind the Latex Glove Ban
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.
Read moreMegan Lenhart: Challenge Your Expectations with CrossFit Training
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.
Read moreRequest a Second Disability Placard
Our Legislative Advocacy Committee's ongoing efforts have resulted in families now being able to request a second disability placard for their vehicles.
Read moreNew State Proclamation Recognizes the Illinois Spina Bifida Community
Watch CBS2 Chicago’s coverage of the Illinois Spina Bifida Association and the Illinois proclamation of Spina Bifida Awareness Day.
Read more2023-2024 ISBA Scholarship Winners
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".
Read moreKendall Gretsch Fund for Adaptive Athletes 2022-23 Annual Report
Six-time paralympic medalist Kendall Gretsch, of Downers Grove, has established a fund to promote sports to Illinois children and adults with spina bifida. The Kendall Gretsch Fund for Adaptive Athletes is administered by the Illinois Spina Bifida Association (ISBA). The fund helps Illinois individuals and families living with spina bifida pay sports-related registration, equipment, and travel expenses.
Kendall, who was born with spina bifida, competes in Para-Triathlon and Nordic skiing. She won two golds in the women’s biathlon sprint and cross-country long distance at the 2018 PyeongChang Paralympic Winter Games. At the 2020 Tokyo Paralympic Games Kendall won a gold medal in the Paratriathlon wheelchair event. Kendall medaled in all three Biathlon events winning bronze, silver, and gold medals at the Beijing 2022 Paralympic Winter Games. She is only the fifth American to claim gold medals at both the summer and winter Paralympic Games.
The Illinois Prairie Community Foundation helps people with spina bifida with hospital stay expenses
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.
Read moreThe Community Foundation for the Land of Lincoln Helps People with Spina Bifida with Hospital Stay Expenses
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.
Read moreISBA Families Donate 14,000 Catheters for People with Spina Bifida in Ethiopia
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.
Read moreCollege Student Athlete Succeeds with ISBA Executive Functioning Coaching
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.
Read moreSpecial Fathers Network Dad to Dad Podcast with Jeremy Meinhardt, ISBA Board Chair
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.
Read moreA Water Bill and a Mother's Care
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.
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