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When Tia first learned about ISBA’s Executive Functioning Coaching Program from ISBA outreach staff at her son’s medical appointment, she wasn’t sure what to expect. Ethan, her eleven-year-old son, was struggling daily; quickly overwhelmed by big emotions, unable to express them, and often dependent on her to solve problems that felt too hard. Like many children and adults with spina bifida, Ethan needed support with executive functioning, the set of mental skills that help us manage emotions, stay organized, make decisions, and handle everyday challenges. ISBA’s coaching program -- free, customized for people with spina bifida, and offered via Zoom to Illinois residents over age ten -- became a lifeline.
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.
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.
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.
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.
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!”
