Meet Savannah

Meet Savannah

By Savannah’s family Savannah, is 16!  She was diagnosed with CdLS around 1.5 when we attended the Dallas CdLS conference.  We had no idea what to expect. She has 4 older siblings (all are a total of 5 years apart, so very close in age).  They all have pushed...
5 Tips for a Sensory-Friendly Halloween

5 Tips for a Sensory-Friendly Halloween

Lara Sandora, The Mighty Do you need a sensory-friendly Halloween celebration? Halloween is typically a kid favorite — no long meals to sit through, fun costumes to plan and put together, plus they get to stay up late and have a ton of candy.  Many families with...
Meet Hazel

Meet Hazel

By Hazel’s Family Hazel, an almost 17 month old, loves rough and tumble play with her 3 1/2 year old brother, blowing raspberries, the outdoors, swinging, spinny toys, music, and kisses from her dog! She is becoming more engaged with the people and environment...
Thank you Chicago!

Thank you Chicago!

It was a great 2024 Chicago Marathon Weekend for Team CdLS.  Thank you to our athletes and Curb Crew! Check out the photos: If you would like to make a donation click here – https://interland3.donorperfect.net/weblink/weblink.aspx?name=E356991&id=42 Thank...
Meet Liam

Meet Liam

By Liam’s family Liam was born with multiple health concerns that led his medical team to seek out a genetic cause. At one-month-old, he was diagnosed with a rare genetic condition known as Cornelia de Lange Syndrome due to a gene mutation. Since then, his...
Meet Bianca

Meet Bianca

By Bianca’s family Bianca, or B (as we call her) is very much a teenager. Born at 5 lbs. 9 oz, the first label the doctors gave her was “failure to thrive” until we could get her properly diagnosed by a geneticist at eight months old. A once floppy girl with low...