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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 to host pizza fundraiser in NH

    Join the CdLS Foundation on August 10th at The Community Oven, a local pizza restaurant in Hampton, NH, hosted by our Communications Coordinator Brenda Shepard. A percentage of all food sales will be donated to the CdLS Foundation, so come hungry and tell your friends!      Brenda is thrilled to be taking part in such a rewarding fundraiser. She said, "I'm so excited to bring awareness of CdLS and the Foundation in...

Fun Runs Take Over the 5k World

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Upcoming: Brew & BBQ

     On Saturday, June 13, the Cornelia de Lange Syndrome (CdLS) Foundation will be hosting the 2015 Brew & BBQ for CdLS. The event, which is being held at the Thomas Hooker Brewing Company in Bloomfield, CT, begins at 6 PM.      The event is sure to be a fun filled evening with tasty BBQ, beer tastings, brewery tours and a raffle. Little Mark's BBQ is providing a menu that includes sliders, brisket, wings...

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Your Voices: Josie's New Friend

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NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day

Norm's family was very fortunate to get a correct diagnosis within a couple of days of Alison's birth in 1989. When Alison was transferred to a top hospital in Providence, RI, "A very knowledgeable geneticist was able to see her symptoms and diagnose her right away," he explained. From then on the family knew that they were going to have a rough road ahead. Norm immediately got started researching ways to help Alison and learn more...

Your Voices: Angelika's Story

At four days old, Angelika had a bowel obstruction removal with an annular pancreas. We sent off a genetic sample to test for the type of syndrome she has, which is CdLS, with NIPBL gene mutations. At two months old she had a fundoplication with a G-Tube insertion. At four months old she, had an eye exam showing that she is near sighted and has cortical cataracts. She had a tube insertion (twice) due...

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CdLS Awareness Day and What You Can Do

National CdLS Awareness Day is right around the corner. May 9th will, as it seems to do every year, sneak up on us all. This year, to help facilitate your efforts nationwide, we put all of our awareness resources in one spot on our Web site. Whether you're posting fliers around your town, leaving bookmarks at the local library, or holding a rally at your child's school, we have what you need to succeed this...

Your Voices: Mason's Story

Written by Mason's father, Michael:When my son, Mason, was born, the neonatologist asked me to look at a book. It was a medical journal from the sixties. There were all these photos of children with CdLS. I looked at that book and read the description of the syndrome. My wife, Misty, is the one who contacted the Foundation. I remember not wanting to talk to anybody or to go to a conference and hang out with...

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The Cornelia de Lange Syndrome (CdLS) Foundation's sound fiscal management practices and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America's largest independent charity evaluator. This is the fourth consecutive time that CdLS Foundation has earned this top distinction. Since 2002, using data-driven analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added a second dimension of Accountability and Transparency (A&T)...

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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