Category Archives: Links

A diVINE event to benefit the Foundation

Wine Tasting Side Bar 2009This fall, the Foundation introduces an event that is truly divine. New Englanders are invited to attend Vines, Wines and Meaningful Times, a wine tasting event in Coventry, CT to benefit the Foundation on September 26.

Guests enjoy a tour of the Cassidy Hill Vineyard cellars, taste unique wines, view the beautiful countryside, and spend some quality time with friends.

Proceeds help provide much-needed services to those affected by CdLS and their families. In the midst of a hectic-paced society, who knew that awareness and fundraising could be done by relaxing with a glass of your favorite wine? This event is sure to be a barrel of fun!

To RSVP  or to receive more information about hosting your own wine tasting to benefit the Foundation, email events@CdLSusa.org or call 800-753-2357. The Foundation is “grapeful” for your support! – JS

P.S. If you don’t receive our quarterly newsletter, Reaching Out, by mail, the new Summer 2009 issue is now available online. Click here to view our latest issue. Want to receive an email link to each new issue? Email info@CdLSusa.org to join the email list.

 

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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 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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It’s a birdie, it’s an eagle, it’s a…golf tournament!

 

hole63

The onset of warmer weather marks the beginnings of the golf season. What better way to swing into spring than enjoying a great round of golf on a beautiful course while bringing hope to kids with CdLS?!

The 17th Annual CdLS Charity Golf Tournament tees off on Monday, May 18, at The Georgetown Club in Georgetown, MA. Early bird registration is $160 per golfer (before April 15) and $175 after. Great sponsorship packages are also available. Click here to check out the CdLS Charity Golf Tournament brochure or view the sponsorship packet.

The CdLS Charity Golf Tournament was established in 1993. Inspired by their children with CdLS, New England parents have made this event an annual labor of love. Since its inception, the tournament has raised over $325,000 to help people with CdLS live better, fuller lives.

Registration is already underway, so gather your foursome, dust off those golf clubs, and RESGISTER TODAY.  -JS

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What’s Your Resolution?

Fireworks

The dawn of every new year brings about “the list” – New Year’s resolutions. This year, why not deviate from the traditional dieting and makeovers and add a little philanthropy to your list? There are so many ways to make a difference in the lives of those affected by CdLS. While many of you have the opportunity to personally have an impact on the life of a child with the syndrome, everyone can help support the Foundation’s efforts to reach out to children across the country. Here are a few resolution ideas, compliments of the CdLS Foundation:

 DonateAs always, direct donations, no matter how big or small, are always important and greatly appreciated. No amount is insignificant when it comes to funding for hope. To make a donation, call 800-753-2357 or visit www.CdLSusa.org and click on the GIVE tab.

Host or attend an awareness event There are so many ways to raise awareness for CdLS, and the Foundation can’t do it all alone. Whether it’s a bowl-a-thon, dance party, cook-out, or classroom presentation, the possibilities are endless. Events are fun ways to raise funding while providing valuable education to the community. This year you can help support the Foundation’s efforts to start a national fundraising event in early summer. More details will be provided in the upcoming edition of the Reaching Out newsletter, which will be mailed in February. Contact the Foundation at 800-753-2357 or events@cdlsusa.org for help organizing and promoting your upcoming event.

Can’t host an event? Keep on the lookout for local awareness events that others are holding and reach out to help support their awareness efforts. Support can be in the form of attendance, fundraising or sponsorship.

Run or Recruit for Team CdLS Last year Team CdLS had a great run at the Chicago Marathon. Recruitment for this year’s Team CdLS is already underway, and more runners than ever are needed to “go the distance” for those with CdLS. If you are interested in running in or organizing a Team CdLS walk or run, or if you know of a great running mate, please contact events@cdlsusa.org. To view the results of last year’s Chicago Marathon, click here.

Go GreenEveryone’s feeling the strain on their wallets, including the Foundation. Help the Foundation cut costs and “go green” by requesting to receive your copy of the Reaching Out newsletter and other materials electronically. The Foundation saves printing and mailing costs while being more environmentally friendly. Just contact Barbara at info@cdlsusa.org or 800-753-2357 and let her know you’re “going green.”

Sport the CdLS Foundation logo Expand your family’s wardrobe and your community’s awareness by purchasing logo gear from the CdLS Foundation’s online store. There’s even a special Team CdLS logo line. From onesies and teddy bears to sweatshirts and mugs, there’s something for the whole family. Part of the proceeds from every purchase goes to support the CdLS Foundation. Help make an awareness fashion statement and click here to check out the CdLS styles. You can also access the store by clicking on the link on the CdLS Foundation homepage, www.CdLSusa.org.

These are just some of the ways you can be resolved to reach out for the benefit of those with CdLS. If you decide to make one of these resolutions or create some of your own, please share them by posting a comment on this blog. Your efforts will encourage others to step up and join in the effort to make 2009 a year of hope. Have a great year!  -JS

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Online Inspiration

Maegan

Maegan

In the midst of all the holiday madness, take a moment to check out something truly inspirational. Maegan, 34, from Greensboro, NC , has CdLS and recently created her own Web page to  raise awareness of the syndrome.

Maegan’s Web page creation was part of her graduation project at Partners in Policymaking, a national program that helps promote advocacy for  individuals with developmental disabilities. Her page includes her personal experience of being diagnosed with CdLS as an adult, along with important information about the sydrome and links to other sites and blogs about CdLS. Who better to inform others about CdLS than someone with the syndrome?!

Maegan’s Web page inspires and encourage others with CdLS to strive for their goals and accomplish things that others without CdLS can.

Click here to check out Maegan’s Web page. Thank you Maegan! -JS

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