Monthly Archives: May 2009

Time to “Tag the Day”

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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

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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

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Cornelia de Lange Syndrome Awareness Day marks 20 years

Cornelia de Lange Syndrome Awareness Day marks 20 years: Two decades later, families of children born in 1989 struggle for awareness, understanding

 NATIONAL (May 9, 2009)—Even as the 20th anniversary of Cornelia de Lange Syndrome (CdLS) Awareness Day is marked on May 9, many people still ask, “C-d-what?

While 20 years has seen much scientific success, including the discovery of three genetic mutations responsible for the syndrome—which causes a range of medical, physical and cognitive problems—CdLS remains mostly unknown, even among medical professionals. Read more …

 

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Bid to benefit kids with CdLS

dsc02970Just in time for National CdLS Awareness Day, Amy from Missouri is hosting an eBay jewelry fundraiser to benefit the CdLS Foundation. Amy’s three-year-old son, Levi, has CdLS, and according to her, “We feel it is our turn to give a little back [to the Foundation].”

The fundraising auction takes place online from May 9 – 14.  Choose from a selection of fun, beautiful jewelry from retailers like Target, Kohl’s and more. Accent your summer outfits while giving hope to those with CdLS. To check out the jewelry and/or place an order, just log on to eBay any time throughout the week and type CdLS Jewelry in the search box.

Special thanks to Amy and her family for their generous fundraising efforts! – JS

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