Monthly Archives: June 2009

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

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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 outreach@cdlsusa.org 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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