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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 moreFor 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 moreISBA'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 moreWe 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, 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 moreLike 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 moreOur Legislative Advocacy Committee's ongoing efforts have resulted in families now being able to request a second disability placard for their vehicles.
Read moreWatch CBS2 Chicago’s coverage of the Illinois Spina Bifida Association and the Illinois proclamation of Spina Bifida Awareness Day.
Read moreCongratulations 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 moreSix-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.
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 moreThanks 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 moreIn 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 moreLearn 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 moreClick 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 moreAn 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.
Read moreParents 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.
Read moreThanks 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.
Read moreA 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.
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