The CdLS Blog

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...

Mark and Lyndsee F., Cambria’s Grandparents  Cambria is 14 years old, 3’10", and 40 pounds. The doctor who delivered her was the first to mention CdLS. She was medevacked to Tucson Medical Center, where they formalized her diagnosis, gave her a feeding tube, and were...

Adapted from: Udservices.org  Adults with disabilities make up nearly 20% of the American workforce. Still, they often face more significant challenges in finding and maintaining employment. In most cases, this is because they don’t have the opportunity to develop...

Lisa T., Dorian's Mom  On January 17, 2001, Dorian was diagnosed with CdLS after her pediatrician noticed that she had only gained four pounds since birth despite being breast-fed. Despite not showing any limb abnormalities, Dorian's slow growth raised concerns, and a...