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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.

Young girl with CdLS gets magic wheelchair, leads race

On Friday, February 10, Emma Pietrafesa was given a magic wheelchair to kick off the Boynton Beach Barrier Free 5K celebration weekend. The 10-year-old was named the official starter of the race earlier this year. The wheelchair was unveiled at a pre-race ceremony at Congress Avenue Barrier Free Park, which is designed with the needs of disabled children and adults in mind, like Emma. Emma has CdLS, and though she is nonverbal, she was able...

Expanding Team CdLS

The CdLS Foundation is constantly trying to expand our network of connections, whether that be with families, professionals or even athletes. This year, Team CdLS was accepted for the first time as an official charity partner of the TD Five Boro Bike Tour. This exciting new venture for the team is a result of hard work and dedication by Foundation staff and volunteers. After a quick revel in the accomplishment, we're already looking to expand...

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CdLS Foundation New Year's Resolutions

The New Year is a time for reflection; not only for closure on the past year's events, but to plan for the future. The CdLS Foundation is no different, and the staff has a few resolutions of their own for 2017.I'd like to give a hug or hand shake to more people with CdLS." - Lynn, Family Service Coordinator "I resolve to attend at least one family gathering. I've heard so much about them in...

All Love for the CdLS Foundation

On Saturday, December 3, crowds lined up at the starting line of the annual One Love, One Heart 5K in Decatur, GA. Runners donned fuzzy hats and long sleeves in the chilly start to winter in honor of the CdLS Foundation. After a television news program mention, spirits were extra high for the annual race. Jim and Jen Pomfret originally started One Love, One Heart in honor of their daughter Maya, now 13 years old,...

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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...

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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...

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