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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.

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...

Wrightslaw offers IEP worksheet to keep meetings focused

The team at Wrightslaw has created a great tool for parents hoping to have a successful and productive IEP meeting for their child. The worksheet focuses in on needs and actions that should be taken to address your needs. It also gives great tips, such as:"Make requests in writing. If you make a verbal request, be sure to follow up with a letter. If you have a problem, think about possible solutions to the problem....

2014 de Lange Society Inductees

The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce that five inductees will be honored at the second annual de Lange Society on June 29, 2014 in Costa Mesa, CA.The 2014 inductees are: Jim and Jan Abbott Joanne Gersuk Jim Kenney Angela Young  The de Lange Society, named after the doctor who cared so much about children with the syndrome, publicly recognizes individuals and volunteer groups, who, like Dr. Cornelia de Lange, lead the way for others.  The volunteers...

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The CdLS Foundation Gets a New Look!

We hope the new CdLS Foundation logo will bring you hope and represent the support that the CdLS Foundation works to provide every day. We're so excited to share this news with you all. ...

"For the Love of the Story"

Enjoy this wonderful story from Dena, mother to Benjamin who has CdLS."Dena is a mother, story teller, book seller, and community treasure. She has taken her passion for teaching and community-building and created Stories by the Sea; workshops to assist young writers in discovering, developing, and celebrating each one's unique voice and igniting the spark to tell their own stories." - PechaKucha, 20x20 story....

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