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...
by Ashley Kus | Aug 13, 2025 | Media Room, Uncategorized
By www.epmagazine.com Tips for Parents Preparing for a Child’s Future More than two decades ago, when I began my career at Regional Center of Orange County working with people with developmental disabilities, only a very small number of adults we served were employed...
by Ashley Kus | Aug 11, 2025 | Media Room, Uncategorized
By Oliver’s family Meet Oliver! Oliver is a 9-year-old boy with CdLS who brings light, energy, and kindness wherever he goes. He is the 2025 Team CdLS Chicago Event Ambassador! He lives in the western suburbs of Chicago with his family: Molly (mom), Andrew...
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