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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 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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National Nonprofit Teams Up With PGA Tournament Charity Program

07/11/16
AVON, CT (July 25, 2016) -- The Cornelia de Lange Syndrome (CdLS) Foundation of Avon, CT, is proud to partner with the Travelers Championship for the first time to participate in their Birdies for Charity fundraising program. 
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CdLS in the News

Daughter never discussed aborting son with birth defect

12/22/16
When my daughter was pregnant with him, a sonogram indicated many abnormalities such as no arms, enlarged heart, spinal problems and on and on. She and her husband never even discussed abortion, and Adrian was actually taken by forced labor due to the threat on his life in the womb.
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New southern playground for children with disabilities

12/19/16
A $960,000 playground in Park Holme -- Adelaide's first designed for children with
disabilities -- may have to be scaled back amid a cloud over a large chunk of its
funding.
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HudsonAlpha acts as catalyst for Alabama bioscience growth

11/22/16
David and Miranda Ainsworth of Florence spent eight years going to countless doctor appointments searching for a diagnosis for their daughter Anna Brooke.
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Bournemouth charity helps man with disabilities secure job

10/18/16
A Bournemouth charity has helped another young person with disabilities secure a job.
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Figuring out Anna Brooke with new genetic testing in Alabama

10/06/16
"We just knew in our hearts there was something else going on," Miranda Ainsworth of Florence said Wednesday.
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