Monthly Archives: January 2009

Hockey is more than just a game for Matt

Matt with the Sound Tigers coach

For those not up on their hockey news, there’s a cool story posted on the American Hockey League’s Web site about Matt, a 13-year-old CT boy with CdLS who may be the biggest Bridgeport Sound Tigers fan.

In the midst of New England’s below freezing temperatures, this story is definitely a heart warmer! The article describes Matt’s syndrome, his love for hockey and how the team has allowed him to have a special job to help the coaches and players. Despite his limitations, Matt has accomplished great things and has won over the hearts of everyone in the rink!

 Be sure to click here and check out this great story.  – JS


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Filed under CdLS, CdLS In the News

Hey Atlanta — on your mark, get set, go!


Maya (left) and friend Riley at the 2008 race

Runners and walkers in the metro-Atlanta area have a good reason to get out of a bed on a cold February morning — the fifth annual For the Love of It 5K Run/Walk to benefit children with Cornelia de Lange Syndrome (CdLS). The inspiration behind the event is 5-year-old Maya, daughter of race organizers Jim and Jen Pomfret. 

The event takes place Saturday, February 7,at Medlock Park in Decatur. All proceeds go to the national CdLS Foundation, which provides support and services to families like the Pomfrets. For more info or to register (just $18), contact the Pomfrets at

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Filed under CdLS In the News, Fundraising

“Leaping” to help those who can’t

logo-leaps-of-love The CdLS Foundation is excited to introduce its newest, and by far cutest, fundraising event to date: Leaps of Love, a Valentine’s Day-inspired program for little kids. The event takes place this February in child care centers and elementary schools (suitable for grades K – 2) across the country. 

Children “leap” to raise funds to benefit individuals with CdLS (many of whom cannot leap themselves). They also participate in an art activity and learn about the syndrome through Leaps of Love for Emma, a story booklet about a little girl with CdLS and a hole in her heart.

Here’s how it works:

Participating child care centers/schools request a Leaps of Love kit,  complete with pledge forms, letters to parents, the story about Emma, and materials to make heart cards.  (The cards can be sent to Emma if there is not a child with CdLS in the center’s community.)

Children collect pledges for the number of leaps they complete in one minute. Although Valentine’s Day-inspired, the event can take place any time in February. Of course, fundraising efforts won’t go unrecognized. Each child who raises $100 or more gets a t-shirt. The center or school that raises the most overall, wins a $250 gift card to Barnes & Noble.

This is a great, interactive event that gets kids moving, teaches them about CdLS and helps them understand the importance of helping others.

Help us spread the word and get this event off to a great start. If you have a “little leaper” in elementary school or day care, or can contact a center or school in your area, please contact  for an infomation sheet you can share . And be sure to check out our Leaps of Love Web page. –JS

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Filed under CdLS Events, Fundraising

What’s Your Resolution?


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 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 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 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 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,

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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Filed under CdLS, Foundation News, Fundraising, Links