Tag Archives: CdLS

On the run in Indiana

For all you Midwesterners looking to get some exercise and raise money for a great cause, we have just the event for you: the 10th Annual Lapel Village Fair Run/Walk on Saturday, July 11. The event, organized by Tammy and Scott, parents to 19-year-old Conrad, benefits the CdLS Foundation.
The event begins at 7:30 a.m. at Lapel High School, 1850 South 900 West in Lapel, IN. Click here for a map and directions. Registration is from 6:45 – 7:15 a.m.

Whether you’re a runner at heart or just enjoy a lazy stroll, this event has something for everyone. You can participate in the 5K run/walk for $19 or enjoy a one-mile fun walk free of charge.

Awards are given to the top three runners  and walkers in each age group, as well as the top overall male and female runners.

For more information, call the Foundation at 800-753-2357 or email events@CdLSusa.org. Thanks to Tammy and Scott for organizing this event. Have a great summer! – JS

Runners from the 2007 event

Runners from the 2007 event

P.S. Midwestern fundraising is heating up. Next is the 11th Annual Illinois CdLS Golf Fundraiser on Aug. 3. Click here for more details about this and other upcoming events or email events@CdLSusa.org.


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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


Filed under CdLS, Foundation News, Links

Golf tourney a swinging success

NEGolf_4The 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



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Family Time

2008 Michigan Family Gathering

2008 Michigan Family Gathering

Nothing is more important than family. The CdLS Foundation is proud to serve as an extended family, one that provides the extra support needed to help families cope with raising a child with CdLS. This year, why not personally connect with the Foundation and other families of children with CdLS at a family gathering.  These gatherings are hosted by families throughout the country and provide an opportunity for families to share their experiences, encourage one another and enjoy the company of those who understand their situation. At some of the gatherings, you may also meet one of the Foundation’s family service coordinators, along with medical professionals who are familiar with CdLS.

This year, gatherings will be held in the following locations:

  • May 2 – Katy, TX
  • June 6 – Dresher, PA
  • July 18 – Harvey, LA
  • August 1 – Bellevue, WA
  • August 15 – Gilsum, NH
  • August 15 – St. Louis, MO
  • September 12 – Lodi, CA

Click here to learn more about these gatherings and other Foundation events. To host a family gathering, contact families@CdLSusa.org or call the Foundation at 800-753-2357.

For all you Northeast families, don’t forget about the Foundation-sponsored CdLS Awareness Day Picnic on Saturday, May 9. Click here to view the event flier and RSVP today. Happy mingling! -JS

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Tag the Day for CdLS

yardsale_logo-small3This summer,  the CdLS Foundation is bringing back one of its original fundraising event:  the yard sale.

Yard Sale Across America takes place Saturday, June 6. Families from coast-to-coast will be cleaning out their closets, basements and attics and hosting yard sales to benefit the CdLS Foundation and the families it serves.

Want to “Tag the Day” for CdLS? It’s easy: just go online and request a Yard Sale Across America kit, complete with all the tips, materials and guidelines you need to have a successful yard sale.

Then choose a central location and start gathering your items. The more the merrier, so get your friends, family and neighbors in on the action too. Can’t have a yard sale on June 6? No worries – although June 6 is the official date, you can have your yard sale any time in June.

Now is the time to get started, so request your kit today. With your support of events like Yard Sale Across America, the Foundation can continue to reach out, provide help, and give hope to everyone affected by CdLS. -JS

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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 communications@CdLSusa.org. A new “Super Siblings” article will be featured in each issue of Reaching Out.

Don’t receive Reaching Out yet? Then contact info@CdLSusa.org 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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