Category Archives: CdLS In the News

Have you read the news?

CdLS awareness is on the rise as families across the country get some great publicity. May was a month of increased activity to promote National CdLS Awareness Day, which was May 9. Since then, newspapers around the U.S. have been giving readers … Continue reading

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Hockey is more than just a game for Matt

Matt with the Sound Tigers coach For those not up on their hockey news, there’s a cool story posted on the American Hockey League’s Web site about Matt, a 13-year-old CT boy with CdLS who may be the biggest Bridgeport Sound Tigers fan. … Continue reading

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Hey Atlanta — on your mark, get set, go!

Runners and walkers in the metro-Atlanta area have a good reason to get out of a bed on a cold February morning — the fifth annual For the Love of It 5K Run/Walk to benefit children with Cornelia de Lange Syndrome … Continue reading

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CdLS featured on CNN web site

Since raising awareness of CdLS is a huge priority for me, you can imagine my delight when a young girl with CdLS was featured on CNN.com–the cable giant’s popular web site–this week. Four-year-old Maya Pomfret from Georgia is one of the “stars” of … Continue reading

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Horsey Family Featured on NPR

I have always been a fan of the personal interviews of StoryCorps, an oral history project that is broadcast each Friday on National Public Radio (NPR), but today was especially meaningful for everyone who cares for someone touched by Cornelia de … Continue reading

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