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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 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.
Read more“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.
Read moreIt 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.
Read moreLuis 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.
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Thanks to all who joined us for the “SB All-Stars” featuring Javier Báez. Sponsored by Chicago Cut Steakhouse & ESPN Chicago, this event was a fundraiser benefiting the Illinois Spina Bifida Association.
Save the Date: Join us Saturday, July 21, 10am-4pm at Morton College in Cicero (MAP) for the Illinois Spina Bifida Association's 2018 Statewide Education Conference. Conveniently located off the Central Ave exit on I-55, and accessible via CTA & PACE.
Registration and presenter info to come.
The Illinois Spina Bifida Association (ISBA) is pleased to announce the successful completion of the Community-Clinic Connection program pilot in Central Illinois in partnership with OSF HealthCare.
This program has been made possible in part by a $2,500 grant from the Fritz and Doris S. Reuling Charitable Fund, the Fontaine Earle Fund, and the Pete and Mildred Donis Charitable Fund of the Community Foundation of Central Illinois.
"Through the generosity and stewardship of the Community Foundation of Central Illinois, ISBA has been able to increase social connections and access to resources for Central Illinois families, which can improve their health quality of life," said Matt Larsen, ISBA Executive Director.
The Community-Clinic Connection program will continue in 2018 in Central Illinois and Chicagoland.
The McHenry County Community Foundation has named the Illinois Spina Bifida Association as a recipient of a $4,000 grant its Community-Clinic Connection program, which provides community-based support and coaching services to increase family resilience, health quality of life, and the independence of children and adults living with spina bifida.
Read moreAs Sabrina said, “The moral of this story is to never give up fighting for what you need. Learn what you’re entitled to receive. And remember that the ISBA is there to help.” We shall always remember Sabrina!
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