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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

Geneticist Dr. Laird G. Jackson receives David L. Rimoin Lifetime Achievement Award

03/23/17

Laird G. Jackson, MD, FFACMG, is the recipient of the 2017 ACMG Foundation David L. Rimoin Lifetime Achievement Award.

The 86-year-old Dr. Jackson, a professor of obstetrics, gynecology, and medical genetics at Drexel University College of Medicine, was honored for his commitment to teaching, his leadership in the field of prenatal genetic screening, and his decades of work surrounding the characterization and treatment of Cornelia de Lange Syndrome.

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Another family who loves foster children

03/20/17
Philip and Shelli Olson have been doing foster care for years. They have adopted six of their foster kids. They have had one little girl from birth who has Cornelia de Lange syndrome and when they found out about her sister, who also has it, they adopted her as well.
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Winterfest more like spring blast

02/23/17
The Ida Fireman's Park is hoping to raise between $40,000 and 50,000 for the Wertenberger family. Dusty and Jen Wertenberger's one-year-old son, Kaiden, was born with several birth defects, such as heart issues, a small head and a hand defect.

The family, wearing purple T-shirts that stated they love someone with CdLS (Cornelia de Lange Syndrome, a very rare genetic disorder), gathered around Kaiden inside.
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Challenged 10-year-old thrilled with her Camaro wheelchair

02/11/17
Emma Pietrafesa, a 10‐year‐old girl who has Cornelia de Lange Syndrome, was presented, along with her brother Anthony, 12, and her mother Karen, with a 2010 Camaro wheelchair/stroller on Friday.
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Boynton Beach employees build 'magic' wheelchair for young girl

02/10/17
for most girls, getting around in a purple Camaro as their first car is only a dream. For Emma Pietrafesa, Who was born with a developmental disorder, it was a reality in the form of a "magic" purple wheelchair, Built especially for her by two Boynton Beach city employees.
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