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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

'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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Going mainstream: Parents share mixed views as Northampton prepares to launch a new special education model next school year

04/11/17

City mom Erica McMahon said classroom "inclusion" looks good on paper, but there are children for whom mainstream education simply won't work. She says her son, who attends R.K. Finn Ryan Road Elementary School, is one of them.

That's not the case for another Ryan Road parent, Suna Turgay, who thinks inclusion will be great for her 10-year-old son. She said her son, who has Cornelia de Lange, a genetic mutation, currently spends much of his day outside the general education classroom receiving speech and physical therapies.

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Sweet Passover treat offered for special needs Jewish congregants

04/05/17
Some people have seders on the first night of Passover, some have them the second. And some, like those at Congregation Beth Shalom on Sunday, have chocolate seders.

Beth Shalom Cantor Steven Stoehr founded HUGS - Healthy Understanding, Growing Spaces - to give special services to those who wanted or needed them...He said he sought to open the area's worship community to people who had a hard time clearing hurdles, to "get us out of our own silos."

Mikayla Needlman, 11, came to her first HUGS event Sunday, said her father, Marc Needlman. She has Cornelia de Lange Syndrome, which for Mikayla means developmental delays, said her father.
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