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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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!”
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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.
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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.
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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.
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“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.
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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.
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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.
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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.
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As 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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