Category Archives: CdLS

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

(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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Happy Thanksgiving

During the time of thanks, the staff of the Foundation (that’s us below) would like to thank everyone who gives their support, time and dedication to this organization and all of the families we serve: Thank you!



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Time to make some change

pennies for jessica graphic photoand  tagline onlyJust in time for fall, the CdLS Foundation is excited to announce it’s new program, which will use common “cents” to make some real change for those with CdLS. Introducing Pennies for Jessica, a fundraising program available to clubs & organizations throughout the country.

Pennies for Jessica is designed to increase awareness of CdLS in your community and raise funds to provide family support services to families affected by the syndrome. It’s inspired by Jessica, a young girl with CdLS from Mississippi, who began collecting pennies for the CdLS Foundation more than a decade ago. This program is open to any club or organization interested in supporting programs to help disabled children.

Here’s how it works: Representatives from clubs/organizations contact the CdLS Foundation to schedule a free presentation by a Foundation volunteer at a monthly meeting. The volunteers is provided with all the materials needed for a successful presentation. After the presentation, members are asked to distribute Pennies for Jessica collection boxes throughout their communities. Members also have the option of setting up tables at grocery stores and other high traffic areas and collecting the donations personally.

This program is designed to be easy. The event can start any time after the Pennies for Jessica presentation is given and can last for a week, a month, a season, or continually. The organization simply chooses a time frame and how many boxes it wants to distribute. That’s it!

Why participate?  The great thing about this event is that it benefits everyone. Funds raised support the Foundation and those it serves while clubs & organizations get a crash course in CdLS awareness while showing their support for disabled children and their commitment to community service.

We hope that Pennies for Jessica will truly “Provide Hope Through Change.” If you’d like to learn more about this event, know of an organization who’d like to participate, or want to volunteer as a presenter, please contact Gail at or call the office at 800-753-2357. Together, we can make a litte change go a long way! – JS

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On the run in Indiana

For all you Midwesterners looking to get some exercise and raise money for a great cause, we have just the event for you: the 10th Annual Lapel Village Fair Run/Walk on Saturday, July 11. The event, organized by Tammy and Scott, parents to 19-year-old Conrad, benefits the CdLS Foundation.
The event begins at 7:30 a.m. at Lapel High School, 1850 South 900 West in Lapel, IN. Click here for a map and directions. Registration is from 6:45 – 7:15 a.m.

Whether you’re a runner at heart or just enjoy a lazy stroll, this event has something for everyone. You can participate in the 5K run/walk for $19 or enjoy a one-mile fun walk free of charge.

Awards are given to the top three runners  and walkers in each age group, as well as the top overall male and female runners.

For more information, call the Foundation at 800-753-2357 or email Thanks to Tammy and Scott for organizing this event. Have a great summer! – JS

Runners from the 2007 event

Runners from the 2007 event

P.S. Midwestern fundraising is heating up. Next is the 11th Annual Illinois CdLS Golf Fundraiser on Aug. 3. Click here for more details about this and other upcoming events or email

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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 Have a story you’d like to share? Want to get publicity for your next CdLS event? Contact Jennifer at We’ll keep you posted! – JS

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Check out the new CdLS awareness flier

CdLS Awareness Flier 2009The CdLS Foundation is excited to reveal its new awareness flier! Be sure to check out the fresh new look and timely message designed to raise public awareness of Cornelia de Lange Syndrome (CdLS). We hope this flier helps others recognize signs and symptoms of the syndrome and help more children get diagnosed.

Click here to view and print the PDF version of this flier. Please feel free to distribute it among your family, friends and throughout your community. The more people that know about CdLS, the more children living without a diagnosis have the chance to receive the support and medical attention they need.

For more information about how you can raise awareness for CdLS, please contact Marie at or call 800-753-2357.  Already raise awareness for CdLS? Share your stories and encourage others to join your efforts! – JS


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Golf tourney a swinging success

NEGolf_4The 17th Annual CdLS Charity Golf Tournament was a swinging success. The event was held May 18 at the Georgetown Club in Georgetown, MA. More than 20 volunteers, 102 golfers, and 9 families of children with CdLS attended.

Although the day was overcast, the spirit of generosity shined bright. With the help of the Birdie Sponsor, RBC Capital Markets, CdLS Charity Golf Committee, raffles, and the donation of 9 live auction and 29 silent auction items, the tournament far exceeded the fundraising success of previous years. Silent auction items included themed baskets (wine, movies, martinis, etc.), golf foursomes, an autographed baseball, and a Vermont weekend trip. Live auction items included condo stays, Red Sox vs. Yankees tickets, a Bose sound system, and diamond earrings.

Special thanks to this year’s CdLS Charity Golf Committee: Brian O’Keefe, Ava Frank, Dave Molzan, Shelly Champion, Denise and Frank Teixeira, and Steve Igoe. According to Gail Speers, CdLS Foundation Events Coordinator, “the committee did an excellent job, meeting monthly to organize the event. Their hard work resulted in surpassing all fundraising goals.”

Volunteerism and events such as this tournament make it possible to give help and hope to those with CdLS. Thank you to everyone who had a part in this great golf day!  -JS



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