The CdLS Blog

The family of a child with Cornelia de Lange Syndrome (CdLS) held a dinner event in early September to raise awareness and funds for the CdLS Foundation.  High schooler Jia Gupta organized the event to honor her cousin, Kavin.   “Over the last few years, I have...

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 her and...

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...

It was a great 2024 Baltimore Running Festival Weekend for Team CdLS.  Thank you to our athletes and Curb Crew! Check out the photos:

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 around...

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 you and...

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 parents...

Host a Dress Down Day to Support the CdLS Foundation  Gabrielle Nadeau, MA, Communications Director, CdLS Foundation  Organizing a dress-down day at your workplace or child's school is an easy, fun, and impactful way to raise funds and awareness for the CdLS...

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...

In September over 180 people from the CdLS community attended the first Regional Retreat hosted by the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical, cognitive, and medical...