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News About CdLS

The Foundation is a leading news source for CdLS developments, events, commentary, and media coverage. We continually update the news-related content in order to keep you informed.

News Releases

Cornelia de Lange Syndrome (CdLS) Foundation Announces New Executive Director

01/11/17
The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce the appointment of its new Executive Director Morrisette "Bonnie" Royster.
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Cornelia de Lange Syndrome Foundation Raises Over $6,000 on Giving Tuesday

12/23/16
The Cornelia de Lange Syndrome Foundation (CdLS) raised over $6,000 in less than 24 hours on Giving Tuesday in November. The global day of giving harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Giving Tuesday is held annually on the Tuesday after Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday to help kick-off the holiday giving season. 
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Cornelia de Lange Syndrome Foundation Joins the Global Giving Tuesday Movement

11/22/16
The Cornelia de Lange Syndrome Foundation (CdLS) has joined Giving Tuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to celebrate generosity worldwide. Occurring this year on November 29, Giving Tuesday is held annually on the Tuesday after Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday to kick-off the holiday giving season.
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Parents Host "One Love, One Heart 5K" to Benefit Rare Disorder, Daughter

11/02/16
Jim and Jen Pomfret are preparing to mark the twelfth year of what is called the hottest 5K of December. As the One Love, One Heart 5k slogan reads, "One love refers to the universal love and respect expressed by all people for all people." At the event, this love is directed towards those who have a rare genetic disorder called Cornelia de Lange Syndrome (CdLS). This includes their daughter, Maya.
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28th Annual Charity Golf Tourney Benefits Individuals with Rare Disorder

10/21/16
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, held its 28th annual CdLS Charity Golf Tournament at the Tapawingo National Golf Club in St. Louis, MO, on October 10.
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CdLS in the News

Two exceptional special needs students among 125 Bay High graduates

05/17/17
Two Bay High graduates likely taught as much as they learned during their years at the school.

Brent Anderson received the Inspirational Tiger Award at senior awards. Clarence Kennedy was honored for having the Heart of a Tiger. Thursday, they'll get their diplomas with 123 other seniors at the Bay High football field.

Brent has been an inspiration to get to know and love during his time here at Bay High," Amy Coyne, Bay High principal, said. "He inspires every one of us to be better people every day."
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Educating and accepting

05/13/17
National Cornelia de Lange Syndrome (CdLS) Awareness Day is observed the second Saturday of May each year in order to bring attention to this often misdiagnosed genetic syndrome.
Since CdLS is unfamiliar to most people, Awareness Day is an opportunity to educate others about the syndrome. Angie Brown, a 2nd and 3rd grade teacher at Nicholson, used this time to educate local students on CdLS, a syndrome that her daughter, Addison, was diagnosed with in 2007.
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'When you wish upon a star'

04/24/17
It's not every little girl who gets greeted by Snow White at the Blue Bunny Ice Cream Parlor, but that's what happened for five-year-old Skylar Olson Thursday.

The Make-A-Wish Foundation granted Skylar's wish to visit Disney World in Florida.

Attending were Skylar's parents, Justin and Trista Olson, her sister, Jordyn, 8, and brothers, Jayden, 9 and Wyatt, 3, Make-A-Wish volunteers and local Farm Bureau Financial Services representative Mark Frentress.

Trista explained Skylar has a rare gene disorder, Cornelia de Lange syndrome.
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Fountain City family hoping for service dog

04/13/17
A Fountain City family is doing all they can to give their little boy some independence, that freedom would be in part because of a service dog.

Christie Rouse's youngest son, Payson, was born with a rare genetic disorder called Cornelia de Lange syndrome (CdLS). The six-year-old was recently approved for his very own service dog. The only problem is that the service dog costs between $13,000 to $15,000.
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Regulator of chromosome structure crucial to healthy brain function and nerve development

04/13/17
Cohesion controls gene expression and chromatin structure, as well as enabling chromosomes to separate correctly immediately prior to cell division. Mutations in the genes encoding proteins that regulate cohesin and cohesin protein itself cause the developmental disorder Cornelia de Lange syndrome (CdLS). This genetic knowledge hinted that the disease does not result from faulty chromosome separation but rather from structural defects in the chromosome.
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