Recent News in 2011

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CdLS Foundation receives four-star rating

12/15/11

Charity Navigator, a premier charity evaluator, recently awarded the Cornelia de Lange Syndrome (CdLS) Foundation with their 4-star rating. This four out of four star rating is awarded to only one quarter of U.S. charities.

 

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Team CdLS heads to Chicago this fall

07/11/11

Nineteen dedicated runners are set to participate on Team CdLS in the famous Bank of America Chicago Marathon on October 9. Team members are among an estimated 45,000 participants in the 26.2-mile run. The team's goal is to raise $70,000 for the CdLS Foundation.

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Foundation funds two research projects

06/15/11
As part of its 2011 small grants program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded a total of $15,000 to researchers studying various aspects of CdLS.
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Long Island girl named ambassador of Team CdLS' New York City Marathon team

06/08/11
Jenna K. of Wantagh, NY, has been named the 2011 Team CdLS Ambassador for the ING New York City Marathon. Team CdLS raises money to benefit the CdLS Foundation, a national support organization dedicated to serving families of children affected by CdLS, a little-known genetic condition. Jenna, 4, was diagnosed at birth with CdLS.
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Team CdLS names ambassador for Chicago Marathon

06/07/11
Breeze Davis of Downers Grove, IL, has been named the 2011 Team CdLS Ambassador for the Bank of America Chicago Marathon. Team CdLS raises money to benefit the CdLS Foundation, a national support organization dedicated to serving families of children affected by CdLS, a commonly unknown genetic condition. Breeze, 7, was diagnosed with CdLS at age three.
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Team CdLS names ambassador for Baltimore Running Fest

06/07/11
Stephanie Vojtecky of Hanover, PA, has been named the 2011 Team CdLS Ambassador for the Baltimore Running Festival in Baltimore, MD. Team CdLS raises money to benefit the CdLS Foundation, a national support organization dedicated to serving families of children affected by CdLS, a commonly unknown genetic condition. Stephanie, 20, was diagnosed with CdLS at age three.
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Grandfather sets off on cross-country motorcycle ride, from Manchester to San Francisco, in honor of his grandson and others with rare genetic syndrome

04/07/11

What would make a 70-year-old man ride his Harley-Davidson 3,800 miles across America? Simple: To help his grandson and other children born with Cornelia de Lange Syndrome (CdLS), a little known genetic syndrome that causes a range of medical, physical and cognitive challenges to those born with it.

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CdLS Foundation celebrates National CdLS Awareness Day, marks 30 years helping families affected by the syndrome

04/06/11

Just over 30 years ago, a group of moms and dads from across the country came together in a Maryland state park with one common goal: to make sure that no one caring for a child with Cornelia de Lange Syndrome (CdLS) would ever have to feel alone.

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Foundation receives $1,000 grant from Build-A-Bear

02/25/11
The Cornelia de Lange Syndrome (CdLS) Foundation has received a $1,000 grant from the Build-A-Bear Workshop Bear Hugs Foundation. The grant will support the Foundation's national research program.
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CdLS Foundation adds new board members

02/10/11

The Cornelia de Lange Syndrome (CdLS) Foundation has added eight new members to its Board of Directors, class of 2013.

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CdLS in the News

Local runner commits to Chicago Marathon -- for a cause

09/22/11 , Well Commons, Lawrence, KS

Cornelia de Lange Syndrome affects between 1 in 10,000 and 1 in 30,000 people. By those statistics, somewhere between three and eight people in Lawrence are currently living with the syndrome.

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NASCAR Nationwide Series Driver to Promote CdLS Foundation at Final Home Game of Bristol White Sox

08/30/11

Abingdon, VA (August 29, 2011)--On Tuesday, August 30, NASCAR Nationwide Series driver Eric McClure will partner with the Bristol White Sox at their final home game of the season to increase awareness of the Cornelia de Lange Syndrome (CdLS) Foundation. The 32-year-old driver became passionate about the CdLS Foundation after meeting a special young lady with CdLS, Tess Ziemann, and her family at Food City Family Race Night in 2007.

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Toddler raising awareness of CdLS

08/16/11 , WLFI, Indianapolis
Angie Brown flipped through pictures of her daughter Addison as an infant. "She doesn't have the typical baby book. Her baby book is a journal of nothing but tests," Brown explained.
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Photographer to run NY Marathon to fight disorder

07/27/11 , Cherokee Tribune

Aimee Benson is no stranger to marathons.The 5-year Canton resident and entrepreneur, who this year launched her own business -- Aimee Benson Photography -- has participated in four 26.2-mile races.

Now, Benson is in training for one of the pinnacle events for marathon runners -- the ING New York City Marathon. But this time around, Benson is running for a cause.

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Walk planned for Seabrook boy with rare disorder

06/07/11 , Hampton Union

Nothing makes time pass more quickly than an annual event, and as the 4th annual "Hoof-it for Hunter" walk approaches, the changes in 5-year-old Hunter Knowles in the year that has passed are nothing short of amazing.

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Motorcyclist crossing country for grandson

05/20/11 , Cincinnati Enquirer

Ken Fouts' 42-year career as a television director took him to a World Series, a Super Bowl, a summer and winter Olympics and several thousand other sporting events. In all, he traveled about 4 million miles

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Toddler Teaches Life Lessons

05/17/11 , Journal Review

Today isn't Addison Brown's birthday, but it's a significant day just the same for the Crawfordsville toddler and her family.

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Villager's cross-country motorcycle trek aims to raise funds, awareness for Cornelia de Lange Syndrome

05/17/11 , Daily Sun

For Adrian Raya-Fouts' family, birthdays are a big deal. Born with a severe case of Cornelia de Lange Syndrome -- a genetic disorder that presents physical, cognitive and medical challenges -- doctors did not have a lot of hope for Adrian.

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Baby Cambria surprises family with improvements

05/09/11 , Yuma Sun

Soon after Blair Flint's daughter, Cambria, celebrated her first birthday, she surprised everyone by eating on her own. It might not be a big deal for most babies, but Cambria was born with Cornelia de Lange syndrome (CdLS), a rare congenital condition that makes it difficult to eat because oral muscles don't work well.
 

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Vacaville Residents Deal with CdLS

05/06/11 , Vacaville Reporter

With their dark hair, thin eyebrows, small stature, similar builds and winsome smiles, Anya Janoski and Claudia Tiongson could be mistaken for sisters.

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Suicide Skateboards: Young man with CdLS follows his dreams

02/28/11 , Hard Times Magazine

Owner and Ocean City local Josh Levis takes pride in not only his merchandise, but also the message behind his company. He has had to overcome more than this fair share of setbacks, but has always been determined to make the best of things. When Josh was four years old, his parents told him that he had been diagnosed with CdLS, or Cornelia de Lange Syndrome.

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Technology Gives Young Boy a Voice

02/09/11 , CBS 3 Philadelphia

For nine-year-old Andrew Patitucci, music was once the only form of expression. Born with Cornelia de Lange Syndrome, the developmental disorder affected his size and speech. 

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