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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.

CdLS Foundation named One by One grant recipient

On March 9, 2017, the CdLS Foundation was announced as an official One by One Award Recipient. This is the second time the Foundation has been honored with a $500 promotional products grant to use toward awareness materials. One by One is the charitable giving program of 4imprint, a promotional items and imprint company. In 2016, 4imprint celebrated its 10th anniversary and doubled its commitment to this work, providing at least two $500 in-kind promotional...

Foundation's first medical director honored with lifetime achievement award

Laird G. Jackson, MD, FFACMG, was honored with the 2017 American College of Medical Genetics and Genomics (ACMG) Foundation David L. Rimoin Lifetime Achievement Award.Dr. Jackson became involved with CdLS from 1962 to the present, and even mentored current CdLS Foundation Medical Director Tonie Kline, M.D. He currently teaches obstetrics, gynecology, and medical genetics at Drexel University College of Medicine.The David L. Rimoin Lifetime Achievement Award recognizes individuals who have demonstrated the personal characteristics of...

Hosting a family gathering

In 2017, the CdLS Foundation will sponsor eight family gatherings in the United States, at least one in each region. Family gatherings provide families with the opportunity to meet others experiencing similar challenges, develop local supports and relationships and gather information about CdLS, ultimately ensuring that no family ever feels alone. While the Foundation budgets for eight Foundation-sponsored family gatherings, there is always the opportunity to host one of your own. CdLS Foundation staff provides...

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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...