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

Check out the new CdLS awareness flier

The 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

Golf tourney a swinging success

The 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

Time to “Tag the Day”

Next Saturday, June 6th kicks of the CdLS Foundation’s first annual Yard Sale Across America. We hope to have at least one yard sale in every state! The money raised will help provide much-needed support services to individuals and families around the country affected by CdLS. With just one week to go, volunteers in 30 states have already made the commitment to “Tag the Day” for CdLS. However, we still need yard sales in the following states: KY, TN, SC, GA, MS, LA, AR, MO, OK, IA, WI, MT, ID, OR, WA, NV, AR, NM, AK, and HI.

Although the official event date is June 6th, you can hold a yard sale any day in June. Click here to learn more and sign up by requesting your Yard Sale Across America kit. Can’t host your own yard sale? Show your support by donating items to or attending one of the yard sales in your area.  Check out the yard sales in your state.

Have fun, enjoy the arrival of summer, and get rid of your unwanted items while helping some great children who deserve our support. All efforts to help make this national event a success are greatly appreciated! – JS

CdLS Awareness Day Recap

Across the United States, families marked the 20th annual observance of CdLS Awareness Day, Saturday, May 9.

Governors in Maine, Alabama, Connecticut, and Mississippi signed Awareness Day proclamations, as did numerous town and city officials throughout the country.

Families were featured in newspaper articles from Washington state to New Hampshire (visit the CdLS Foundation media room for links), and parents spread the word about CdLS among local schools and health care facilities with CdLS give-aways and materials.

In Connecticut, the Foundation held its annual picnic (see photos below). More than 110 people attended the event, held at a boundless playground.  For several families, it was their first time meeting other families and children. 

Thanks to everyone who helped spread awareness of CdLS on May 9. –MM