by Ashley Kus | Sep 22, 2025 | Media Room, Uncategorized
As seen in our publication “The Path Forward” Transitioning to adulthood is a significant and often overwhelming process for families of individuals with special needs. Planning ahead, especially when it comes to healthcare, education, legal rights, and...
by Ashley Kus | Sep 16, 2025 | Media Room, Uncategorized
Do you have a story idea for our blog? Send your ideas to [email protected] By Ethan’s family Ethan is 11 years old and is part of Team CdLS’ 2025 Chicago Curb Crew! Ethan is 11 years old and has the SMC3 gene variation. He just started 6th grade which is a big...
by Ashley Kus | Sep 12, 2025 | Media Room, Uncategorized
Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org. As seen in our publication, “The Path Forward.” For many families, providing adequate housing for a child with special needs can be fairly straightforward,...
by Ashley Kus | Sep 12, 2025 | Media Room, Uncategorized
by Shaun Heasley Disability Scoop The number of family members providing ongoing care for loved ones with complex medical conditions or disabilities is on the rise and a new report finds that they are struggling to hold it all together. There are 63 million Americans...
by Ashley Kus | Sep 9, 2025 | Media Room, Uncategorized
Do you have a story idea for our blog? Send your ideas to [email protected] By Noah’s family My little brother Noah is 10 years old. He loves music, dancing, and his best friend, who is also my daughter, Maya (3 years old). Noah is the most empathetic human being...
by Ashley Kus | Aug 29, 2025 | Uncategorized
By Trinity’s family Trinity is 11 years old with the mosaic nipbl gene, tested negative on blood but positive on mouth swab. Trinity has a 5-year-old sister. They have a good bond, although Trinity scares her sometimes when she tries to be aggressive. What...
by Ashley Kus | Aug 28, 2025 | Media Room, Uncategorized
On August 16, Cornelia de Lange Syndrome (CdLS) Foundation Board Member Mike Feehan raised over $45,000 during his annual Backyard Obstacle Course in honor of his son Connor, 17, who has CdLS. Since Connor was a year old, Feehan has participated in various...
by Ashley Kus | Aug 27, 2025 | Media Room, Uncategorized
By Shelley Thompson Can you share the moment you first learned about your grandchild’s CdLS diagnosis? How did you feel, and what helped you through that time? I learned Bransen has CdLS when he was just a baby. It didn’t change anything because I knew he was going to...
by Ashley Kus | Aug 22, 2025 | Uncategorized
By Tanaya’s family Tanaya is 30 years old and is Team CdLS’ 2025 Chicago Curb Crew Ambassador! Tanaya is an enthusiastic basketball player and fan, with a particular admiration for Jayson Tatum from the Boston Celtics. In addition to basketball, she is a...
by Ashley Kus | Aug 20, 2025 | Media Room, Uncategorized
By, Jennifer Inspired by this story? Submit your own grandparent story here – http://CdLSFoundation.memfox.io/cdlsgrandparents Jasmine (Jazzy Roo) is my first of three grandchildren. She stole the hearts of her Poppy and me through the weekly high-risk scans and...
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