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The CdLS Blog

The Foundation's blog informs families, doctors, friends and whoever else drops by, about CdLS and the Foundation.

This blog serves as a pipeline for sharing Foundation news, research, updates, and details about upcoming CdLS events on a more current basis.Please note: It is not a place to discuss medical issues nor is it a support group forum.

Sustaining High Spirits This Winter

It's easy to get caught up in the craziness that comes with the end of the year; your responsibilities can range from holidays to end-of-year work at the office. But one thing many forget until it's too late is self-care. Seasonal Affective Disorder (SAD) is a type of depression that's related to changes in seasons. If you're like most people with SAD, your symptoms start each year in the fall and continue into the winter...

Continue reading about Sustaining High Spirits This Winter .

One Cousin's Mission to Raise Awareness Sparks Creativity

In the suburbs of Philadelphia, 9-year-old Kevin Doebley took a local contest and turned it into an awareness campaign in honor of his cousin. The fourth grader participates in a skateboarding program. Mentor Sean Khathavong is very interested in not only teaching the kids to skate, but to be good citizens as well. This fall, he had the children in his training group voluntarily participate in a skateboarding design contest. Each board was raffled off in store...

UK research on Cornelia de Lange Syndrome

The Cerebra Centre for Neurodevelopmental Disorders is organized through the School of Psychology at the University of Birmingham. Their work focuses on difficulties experienced by children and adults who have intellectual disabilities, autism spectrum disorders and genetic syndromes. Specifically, those that are associated with developmental delays. Cornelia de Lange Syndrome (CdLS) is one of the six conditions studied.Ms. Laura Groves, Dr. Caroline Richards and Prof. Chris Oliver recently published an anxiety guide for people...

Meet Dane: Team CdLS Ambassador for Chicago

Dane, proud son of Team CdLS Chicago Marathon runner Dominick Curalli, is three and a half years old.  The adventurous toddler was diagnosed with CdLS at just 3 weeks old.  Dane was born with intense reflux and poor swallowing musculature, which lead to a stay in the hospital for about 4 months until he was able to have surgery for a feeding tube and reflux.  He has hearing loss, sleep apnea and is delayed in...

Wagner raises funds, awareness for CdLS

Photo by Ioanna Raptis/SeacoastonlinePeter Wagner departs Maine for Illinois this weekend to support the Cornelia de Lange Syndrome (CdLS) Foundation in the Chicago Marathon. Wagner has set a goal of $20,000 for his third race on behalf of the Foundation, and is already halfway there.Wagner's daughter, Molly, 28, has CdLS and lives with her parents in Cape Neddick, Maine. She attended the public school system until she was 19, but physical difficulties from the Syndrome...

Your Voices: Josh's Story

My son, Josh, was born in July 1989 and diagnosed at about five months old. We received the diagnosis and a pretty scary early publication from the Foundation on a Friday and I was on the phone with the Foundation the following Monday morning. The information about CdLS at that time was pretty grim, but the relief I found in simply knowing there were caring people and a way to connect with others gave me...

Continue reading about Your Voices: Josh's Story .

Your Voices: Abby's CdLS Foundation Story

Like many parents of a child with special needs, we felt overwhelmed with the news of Abby's CdLS diagnosis. What did this mean for her health? Her development? Her future? These were just a few of many questions that flooded over us. The CdLS Foundation became a comforting resource for us as we sought answers to these and other questions. Abby had just turned four when we first contacted the Foundation and learned that the biennial...

Camps and Professional Development for AL Area Families

Summer can be a time to relax, and have fun - but the learning can still continue! Check out the various Camps for Students that are available at different institutions, Universities, and more this summer. Additionally, feel free to share these professional development opportunities ( VI-HI Professional Development Flyer ) with your child's care team, or even participate yourself! ...

The CdLS Foundation helped us to see all of the "tulips"

In 1987, a writer for the beloved TV show "Sesame Street" named Emily Perl Kingsley penned a now-famous short essay titled, Welcome to Holland. A kind person gave me a framed copy of this essay soon after my daughter, Kayla, was born with Cornelia de Lange Syndrome (CdLS). Kingsley wrote this essay to describe her journey as the mother of a child with special needs. Her son, Jason, was born with Down syndrome. It...

Your Voices: Braxton's (Fundraising) Story

Each year where we live, we have an annual Fall Festival. At the end of the day, a demolition derby takes place. We live in a very small town and this car was donated to help raise money for Braxton to be able to go to the CdLS National Family Conference. People were able to buy raffle tickets for a chance to drive the car in the derby. We didn't make much money on...