Monthly Archives: October 2007

Congratulations to Team CdLS

It was a Chicago Marathon no member of Team CdLS will soon forget.

You may have heard about the tremendous heat and confusion on the course as a result. But this past weekend wasn’t just about running a marathon. It was also about a wonderful group of people, many meeting for the first time, coming together to help children with CdLS. The night before the race, most of the team gathered for a traditional pasta dinner (thank you Lou Malnati’s!). Says runner Emily Mason in her blog:  It was so fun to meet the team. They were all very, very nice. Beth, the team captain, gave me a big hug when I got there. We had a very nice dinner and everyone introduced themselves…  It was also nice to be on a team where everyone was really, really passionate about the cause. If I end up doing Chicago next year I would definitely consider running for Team CdLS again!

The race itself was officially shut down by race organizers due to the extreme heat. The temperature reached at least 87 degrees. Water became scarce, hundreds of runners fell sick and one runner died. Of the 45,000 runners registered, just 25,000 crossed the finish line. (For a news account, see When a Marathon Goes Bad). 

Despite the oppressive sun and humidity, Team CdLS pushed on. Amazingly, all but two members crossed the finish line, although all ran understandably slower than they had originally hoped. Mike DiJulia, a NICU nurse who learned of CdLS while caring for a baby with the syndrome, was the first of Team CdLS to finish—running an impressive 3:19.40. Three best friends from upstate New York —Abby, Ruth and Amy—never quit, sticking together until the end and all finishing at 6:24:41.

We are grateful that no one on the team became seriously ill or injured. We attribute this in part to the heroic efforts of their “curb crews”–family and friends who staked out spots along the route to meet the runners’ ongoing needs for water and other essentials.

Click here for another firsthand account of the race from team captain Beth Smisloff.

As of today, Team CdLS has raised, over $46,000 for the Foundation. We anticipate that continued donations in the coming days will help the team meet, if not exceed its $50,000 goal. Way to go team! – MM /DC

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Calling all Speech-Language Pathologists!

The Foundation is undertaking a first-of-its-kind outreach campaign this fall. We’re reaching out to speech-language pathologists (SLPs) from around the country, making sure they know about CdLS. We chose to target SLPs because nearly all children with CdLS struggle with speech and language—even those who are mildly affected. 

The campaign includes direct mail (see below for the front of the postcard), print advertising, and a table at the annual convention of the American Speech-Language-Hearing Association.

We suspect that many undiagnosed children are receiving speech services. We hope that by educating SLPs about the syndrome, they can help find some of the 20,000 individuals that live without a diagnosis or support services. It’s already working. We recently got a call from an SLP who received our postcard and thinks a child she works with has CdLS.

It’s our hope that this undertaking will be the framework for future programs aimed at professionals and paraprofessionals serving children with CdLS.

A big thanks to the New York Board of Trade’s Futures and Options for Kids program for financial support of this program.  -MM

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