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.

Click here to check out the CdLS Foundation’s Press Room, where you’ll find articles on families in Washington, Iowa, New Hampshire, Mississippi, North Carolina, and Nebraska, just to name a few.

Keep up with all the latest CdLS news at www.CdLSusa.org. Have a story you’d like to share? Want to get publicity for your next CdLS event? Contact Jennifer at communications@cdlsusa.org. We’ll keep you posted! – JS

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 article describes Matt’s syndrome, his love for hockey and how the team has allowed him to have a special job to help the coaches and players. Despite his limitations, Matt has accomplished great things and has won over the hearts of everyone in the rink!

 Be sure to click here and check out this great story.  – JS

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

Maya (left) and friend Riley at the 2008 race

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 Jen Pomfret. 

The event takes place Saturday, February 7,at Medlock Park in Decatur. All proceeds go to the national CdLS Foundation, which provides support and services to families like the Pomfrets. For more info or to register (just $18), contact the Pomfrets at pomfretj@comcast.net.

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 yourself. After you’ve read the article, click on “photos.” Maya is pictured in photos 4, 5 and 6.

A big thanks to Maya and her family for helping raise awareness, especially while wearing bathing suits! -MM

http://www.cnn.com/2007/LIVING/08/13/swimming.lessons/index.html#cnnSTCText.

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 daughter with CdLS, Mary Lindell Horsey or as she was known to many, “Liddy.” Their story was featured on this morning’s NPR programming nationwide and is prominently linked on the NPR web site.

Thom and Karen, we thank you again for your courage in sharing your love and heartbreak. We are honored that you remain a vibrant part of the CdLS Family -dc