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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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CdLS FOUNDATION EARNS COVETED 4-STAR RATING FROM CHARITY NAVIGATOR

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)...


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