by Ashley Kus | Oct 21, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Oct 15, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Oct 11, 2024 | Media Room, Uncategorized
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 Ashley Kus | Oct 11, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Oct 9, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Oct 4, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Oct 3, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Sep 26, 2024 | Media Room, Uncategorized
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...
by Ashley Kus | Sep 25, 2024 | Media Room, Research News, Uncategorized
If you’re new to the CdLS Family you’re probably very interested in learning whether your child with CdLS is mildly, moderately, or severely affected. The following article, written by Dr. Antonie Kline, CdLS Foundation Medical Director focuses on the genetic...
by Ashley Kus | Sep 23, 2024 | Media Room, Uncategorized
Medically reviewed by: Carolyn Sewell-Roberts, LCSW, Cerebral Palsy (CP) Care at Nemours Children’s Health As a parent, you want to give equal attention to all your children. But when parenting a child with special needs, that can be hard. It may feel like there is...
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