Monthly Archives: August 2007

On your mark. Get set. Go Team CdLS!

Team CdLS heads to Chicago Sunday, October 7, for the LaSalle Bank Chicago Marathon. Among the 19 runners (our largest group yet) are 5 relatives of children with CdLS (including 3 parents), a NICU nurse who cared for a baby with the syndrome, a medical student, a graphic designer, and a Pilates instructor.

Team CdLS has been active since the 2000 Chicago Marathon, when runner Frank Mairano of Collinsville, CT—the father of a child with CdLS—used the occasion to collect donations for the Foundation. The team’s goal this year is to raise $50,000 for the CdLS Foundation.

You can read about these dedicated runners, and why they chose Team CdLS, at http://www.cdlsusa.org/teamcdls/runner_profiles.html. -MM

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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 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.

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A big high-five to our volunteers

Seven Foundation volunteers made the journey to our Connecticut office this past weekend to take part in a volunteer training program. The daylong session aimed to provide both Awareness and Regional Coordinators (aka ACs and RCs) tools and information to help them do their “jobs” better.

Foundation staff talked about the myths of CdLS, scientific updates, ways to raise awareness, hosting a family gathering, and legislative outreach, among other things. But it wasn’t all business. Several of us enjoyed getting to know each other over manicotti and stuffed eggplant the night before.

Folks came from as far away as Washington, Utah and Florida – and we certainly appreciated them taking the time out of their busy lives to spend the day with us. We hope they went home with helpful tips and a dose of inspiration.–MM

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Foundation video featured on national cable channel

The CdLS Foundation’s video, Find One Child, has made it national television debut. The nine-minute piece appears every Sunday at 8:30 p.m. (Eastern Time) on the Starfish Television Network—channel 9408 on the DISH Network. If you are not a DISH subscriber, you can tune in live at www.starfishtv.org.    

Starfish Television Network—launched in April—is the nation’s first full-time cable channel dedicated to sharing the stories of charities, foundations and other nonprofits working to make a difference in the world. The CdLS Foundation is among dozens of organizations—including the Children’s Miracle Network, American Heart Association and Operation Smile—providing “seed” programming.

It’s a great way to get information about CdLS into the homes of thousands of viewers–many of whom have never heard of CdLS. Best of all, Starfish airs the video at no charge to us. Be sure to tell your friends and family to check it out.–MM

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