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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.

Your Voices: Sarah's Story

My name is Scott and my daughter, Sarah, has a mild case of CdLS and this is a little about us: Sarah was diagnosed around 1 1/2 to 2 years old. I thought it was a death sentence at first because I had never heard of it before. Little did I know it was far from it, especially with her turning six this April. Has it been challenging? Of course it has, but it also...

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CdLS Foundation Leadership Structure

Learn more about how the CdLS Foundation and our leadership structure (click the image to view full size version):...

Your Voices: Kayla's Story

Days after Kayla was born, our world came crashing down. Born at 28 weeks and in congestive heart failure and respiratory failure, Kayla was not expected to live through the day. She was suffering severe brain damage and had so many medical problems that we didn't know where to start. The Neonatal Intensive Care Unit could do no more for her. That day, a geneticist diagnosed her with Cornelia de Lange Syndrome. It was the...

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Awareness plans for 2015: It's going to be big

We have a new year's resolution for 2015: raise awareness on a national scale. We want to be the topic of discussion on national news shows, such as "The Today Show," or "Ellen." Our focus is not only to raise awareness of CdLS, but also to highlight the unwavering efforts of parents and caregivers of individuals with special needs. With your help, we believe this is possible. We want you all to get involved, by submitting your...

The Season of Giving

At the CdLS Foundation, we like to think we are small, but mighty--just like the individuals we serve nationwide. We make the most with what we have, and work hard to have a lasting impact on the lives of those we serve. Some of the services we provide include: Toll-free "HELP" Lines Trained Foundation staff members answer questions personally and offer individualized support over the phone to families and professionals. Connect with a Family We...

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They're not just T-Shirts

You may have seen our recent CdLS T-shirt campaign buzzing around Facebook. Maybe you stumbled across our banner on the homepage of our Web site. Either way, you may have found yourself purchasing a T-shirt on a Web site called Booster.com, and we think that's awesome.  The coolest part about these shirts is that they're not just T-shirts...they're a means to a much greater end. Each shirt will come across the eyes of, hundreds of...

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2014 Match it! Challenge

Our eight-year-old daughter, Hannah Greyson "Gracie" lives a wonderful life. When she was diagnosed with CdLS, we could never imagine uttering those words, but today we are amazed how well Gracie has succeeded despite her challenges. Gracie's story is one surrounded by our love, that of her three brothers and our extended family. Part of that extended family is our CdLS family--a family we were fortunate to meet for the first time at the 2010...

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Team CdLS Inspiration

Dear Team CdLS,  Can't believe the Bank of America Chicago marathon is next month! I am sure you are counting the days and training so hard for the run. I know most of you from past runs, not me, but my daughter Jane has run. This year, Jane's sister, Julie is the Team CdLS Chicago ambassador.  A Little bit about Julie...  Julie is 35 years old. She has lived in a group home with three other women for...

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A Vision for the Future

What's your vision for people with CdLS? In 2012, the CdLS Foundation created a strategic plan for 2013-15 with input from families like yours. While the end of 2015 seems like a long time from now, we are already ramping up to begin work on the 2016-19 plan, which will include updating the current goals and objectives (www.cdlsusa.org/about-cdls-foundation/strategic-planning.htm), and adding new ones. That's where you come in. Please take a few moments to complete an...

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Opportunities for Research Participation at the Yale Child Study Autism Program

Researchers at the Yale Child Study Center Autism Program are launching a pilot research project on social and emotional development of children with Cornelia de Lange Syndrome 5 years or younger. Similar studies are being carried out with children with Autism Spectrum Disorders and other developmental disorders. The aim of the study is to evaluate mechanisms that give rise to social and emotional difficulties in children with CdLS. As part of their participation in the...