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 a good education about this syndrome and the families affected by it.
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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.
In the midst of New England’s below freezing temperatures, this story is definitely a heart warmer! The [...]

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 (CdLS). The inspiration behind the event is 5-year-old Maya, daughter of race organizers Jim and [...]

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 a photo-web feature about a swimming program (www.swimmerman.com) near Atlanta.
Follow the link below and see for [...]

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 Lange Syndrome.
Thom and Karen Horsey share the joy and grief of loving and losing their [...]