Author Archives: cdlsmarie

The CdLS Foundation blog is moving …

The CdLS Foundation blog is moving to http://blog.cdlsusa.org on our brand new Web site. Be sure to check it out at http://www.CdLSusa.org.

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Happy Holidays from the CdLS Foundation

http://myemail.constantcontact.com/Happy-Holidays-from-the-CdLS-Foundation.html?soid=1101464950648&aid=y330bWzmVWI.

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Making a giant impression …

We’re excited about the first-ever CdLS billboard. Drivers on State Street in Lemoyne, PA, are passing by a larger-than-life photo of Hannah, an area girl with CdLS who is the inspiration behind a Zumbathon to raise money for the CdLS Foundation. The event takes place December 5, from 2 – 4 p.m. at Art in Motion Fitness in Lemoyne.

A big thanks to Lamar Advertising of Harrisburg who provided the billboard pro-bono to the event organizers. For information on the Zumbathon, email events@CdLSusa.org.

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Helping children understand CdLS

Here at the CdLS Foundation, we just love the new book, Melanie and Tommy Have Two Pet Rats and One Syndrome. It’s an educational, fun book written from the perspective of a little boy whose sister has CdLS. Many parents ask if we have anything to educate young children about CdLS, and I would recommend this. It’s a great tool for helping siblings, classmates and other children understand CdLS and special needs in general.

The 40+ page book has lots of photos and is authored by Tommy and his mom, Nathalie. You can buy it several places online, including Amazon. To learn more about Tommy and Melanie, visit their web site at http://www.2petrats.com.

(P.S. The Foundation doesn’t benefit financially if you buy the book. We simply think it’s a great tool.)

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Team CdLS debuts at NYC Marathon

For the first time, Team CdLS is represented in the ING New York City Marathon, taking place November 7. The team is a participating member of the New York Road Runners Community Charity Program.

Among the 10 team members are five parents, one sibling, one relative and three friends of children with CdLS. Two ofthe runners— Beth Smisloff of Ballston Spa, NY, and David Fowler of New York, NY—just completed the Chicago Marathon October 10 as part of Team CdLS.

Smisloff and Fowler will be joined in New York City by Liana Davila of Dobbs Ferry, NY; Carol Campbell of San Francisco, CA; Lori Griffin of Newtown, CT; Hunter Jackson of Salt Lake City, UT; Katharine Gill Law of New York, NY; Susan Leone of Hawthorne, NY; Peter Uzzi of Avon, CT; and Amanda Woodall Lexington, KY.

The team’s goal is to raise $25,000. So far this year, Team CdLS has raised more than $130,000 in races in Manhattan Beach, CA, Philadelphia, PA, Albuquerque, NM, and Chicago, IL. All money raised by Team CdLS goes to the CdLS Foundation in support of its program and services for individuals with CdLS and their families.

Donations to Team CdLS can be online at https://www.cdlsusa.org/secure/donation.asp or by calling 800-753-2357.

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Congratulations Team CdLS Chicago

Since 2000, Team CdLS has run 26.2 miles through the streets of Chicago, raising awareness of CdLS along the way.
This year, all team members crossed the finish line, inspired by children with CdLS and the work of the CdLS Foundation. To date, this year’s Chicago runners have raised more than $65,000 for the Foundation. That money will go a long way in helping us help families. Thanks Team CdLS!

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Families gather in New Hampshire to share, learn and have fun

It was a picture-perfect fall day as nearly 90 people gathered at the New Hampshire shoreline for the New England family gathering September 18. More than 21 families of children with CdLS attended, many with friends and relatives in tow. For five of the families, it was their first time at a CdLS function.

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