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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 Major Gifts Director

06/13/17
The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce the appointment of Kati Liss-Hensel as its Major Gifts Director.

This new position was created to fulfill the Foundation's initiative of focusing on connections with donors. Kati will continue to build upon the current development program and work to strategically expand major gifts, while implementing a donor stewardship and cultivation program.
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25th Annual Charity Golf Tournament Raises More Than $70,000 for Rare Disorder

06/08/17
Avon-based national nonprofit organization the Cornelia de Lange Syndrome (CdLS) Foundation held its 25th annual CdLS Foundation New England Charity Golf Tournament at Ipswich Country Club on Monday, May 22.
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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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CdLS in the News

'Amazing people' work at Opportunity Enterprises

06/04/17
"Hi Jerry, how have you been?" asked Melissa, 39, who was working on counting money with help from a computer and an aide.

Melissa was born with Cornelia de Lange Syndrome, a genetic disorder affecting one in every 10,000 live births hat causes learning disabilities.

Opportunity Enterprises Inc.'s main complex is still a finely-tuned operation where several programs work in sync. There's a production line workshop providing local and regional businesses with piecework goods, and providing O.E. clients with low-end manufacturing jobs.

The sprawling facility continues to house a booming business of shredding papers - up to 20 tons each week - for roughly 1,200 customers across Northwest Indiana.
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Two women turn disabilities into strengths and employment

05/30/17
Susan Wiseman swings her arms and hips to the music at the door of Chuck E. Cheese's, where she waits for families' hands to inspect and stamp.

"Any kind of song," Susan says, will make her boogie.

So, when the kiddie restaurant recently threw a party for her 20th year of work, its furry mascot pranced out and the two danced as Susan said, "Oh Chuck E., I love you Chuck E."

Susan is 48 and has CdLS.
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Samantha Manns: Raising Funds While Riding a Bike

05/25/17
Samantha Manns has gone above and beyond for the CdLS Foundation, participating in a 40-mile bicycle ride fundraiser with just three weeks' notice.
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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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