Monthly Archives: March 2009

Super Siblings Spotlight

For those who didn’t receive the Winter 2009 issue of the CdLS Foundation newsletter, Reaching Out, there was a great story about a college student named Ruth and her relationship with her sister Blair, who has CdLS.  Below is an excerpt from the story:

When Ruth from Texas applied to Texas A&M University, she was required to write an essay describing the person who has most influenced her life. “I knew I had to write about my sister Blair because she has been a huge part of my life that shaped who I am today,” Ruth says.

Blair, now 24, has CdLS. While Ruth is the younger sibling, she grew up with the responsibility of helping her parents care for Blair. In her essay, Ruth explained that she didn’t always appreciate how special her sister was until Blair moved away from home.

The saying goes, “you don’t know what you’ve got until it’s gone.” When I was younger, I thought the saying only applied to material objects. It was not until my sister, Blair, moved away that I realized that the most important things in life are not necessarily tangible.

Ruth admits that growing up with a sibling with CdLS is full of challenges.

Although I loved my sister’s spirit and silliness, I would often become aggravated and annoyed with her unceasing dependence. Instead of going out with my friends, I would have to stay home and watch her.

Despite these challenges, once Blair moved to a group home at age 18, Ruth learned that her sister influenced her life in many ways . . .

To read the complete story, click here and scroll down to page 8.

Ruth is just one of the many “super siblings” out there! If you have a special “Super Siblings” story to share, please email A new “Super Siblings” article will be featured in each issue of Reaching Out.

Don’t receive Reaching Out yet? Then contact to receive an email notice with a link to each new quarterly issue. We look forward to hearing from you! -JS


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Celebrate CdLS Awareness Day

Saturday, May 9th is the 20th annual National CdLS Awareness Day. As the weather starts to heat up, so are plans to make this year’s Awareness Day a memorable one.  There are many ways you can help raise awareness. For some  ideas, check out the CdLS Foundation’s Awareness Day Bingo. Play one, two, three or more squares for a chance to win a prize while spreading the word about CdLS.

In honor of this special occasion, the CdLS Foundation is hosting an Awareness Day Picnic on May 9th from noon – 4 p.m. at Jonathan’s Dream boundless playground in West Hartford, CT. All families, relatives and health professionals are invited to join us in a day of celebration. Kids will have fun clowning around with Punky Nisi the lovable clown ,while parents can enjoy a day with other CdLS families.

The more people know about and understand CdLS, the more children will get diagnosed and receive the support they need from the Foundation and healthcare professionals. Are you aware that one simple activity may help us find one more child, give hope to one more family, and make a real difference?

For more information about CdLS Awareness Day, contact Marie at 800-753-2357 or -JS

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



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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Calling all runners!


After last year’s successful run, Team CdLS is gearing up to participate in the 2009 Bank of America Chicago Marathon on October 11. If you’re a runner and think you have what it takes to “go the distance” for the countless families affected by CdLS, then Team CdLS is calling you!

The 2008 Team CdLS, which consisted of 18 runners, raised over $85,000. The team’s average amount raised per runner was $4,522.56 – the highest of any charity team in the race! This year, our goal is to have over 25 runners in order to surpass this amount and reach out to more families.

If you or anyone you know is interested in racing to raise adrenaline, awareness and funds for kids with CdLS, now is the time to lace up those running shoes. And don’t worry; you are not alone in this journey. In addition to the Foundation’s support, virtual coach Marc Needlman, an experienced Team CdLS runner and dad to Mikayla, who has CdLS, will be there every step of the way with vital training tips and words of encouragement.

Click here to register for the Bank of America Chicago Marathon. When registering, don’t forget to type in Cornelia de Lange Syndrome as your charity of choice. As a Team CdLS runner, you will accomplish your personal dreams while providing hope to children with CdLS, who run their own races with endurance every day. -JS

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