Recent News in 2012

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News Releases

Avon Nonprofit Achieves Highest Rating from Charity Navigator

12/03/12
Avon, CT (December 3, 2012)-- The Cornelia de Lange Syndrome (CdLS) Foundation achieved its second, consecutive 4-star rating from Charity Navigator for sound fiscal management and commitment to accountability and transparency.
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WHS Grad Named as Communications Coordinator for National Nonprofit

11/19/12

Avon, CT (November 16, 2012)-- The Cornelia de Lange Syndrome (CdLS) Foundation is thrilled to announce the appointment of Brenda J. Shepard as its new communications coordinator. Shepard will take over public relations, social media outreach and publications for the national nonprofit, located in Avon, CT.  

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CdLS Foundation Appoints Executive Director

11/16/12
Avon, CT (November 14, 2012)-- The Board of Directors of the Cornelia de Lange Syndrome (CdLS) Foundation unanimously approved the appointment of Marie Concklin-Malloy as its new executive director, effective November 10, 2012.
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CT Man Takes on Ironman Triathlon for Rare Genetic Syndrome

11/12/12
Collinsville, CT (November 9, 2012)-- Frank Mairano, of Collinsville, CT, is no stranger to tough races. He has run 20 marathons and sees no sign of stopping anytime soon. Mairano will swim 2.4 miles, bike 112 miles and run 26.2 miles to honor the memory of his daughter, Lisa Marie, who had Cornelia de Lange Syndrome (CdLS), along with raising funds for the CdLS Foundation.
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Team CdLS to Run in Bank of America Chicago Marathon

09/25/12
Chicago, IL - (September 25, 2012) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is thrilled to have 13 runners from around the country as part of Team CdLS in the Bank of America Chicago Marathon.
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Locals Raise Awareness, Funds for Rare Genetic Disorder

09/18/12
Saratoga Springs, NY - (September 11, 2012) The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is thrilled to have 21 runners as part of Team CdLS in The Saratoga Palio Melanie Merola O'Donnell Memorial Race. Each Team CdLS runner raised funds to benefit the CdLS Foundation and raise awareness for this little-known syndrome in the Saratoga Springs area.
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CdLS Foundation Competes for $5 million in grants through the Chase Community Giving Program

09/18/12
Avon, CT - (September 4, 2012) The Cornelia de Lange Syndrome (CdLS) Foundation is in the running for a share of $5 million in small grants through the 2012 Chase Community Giving Program.
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Charity Team heads to Chicago

07/17/12

Team CdLS to run in Bank of America Chicago Marathon

 

CHICAGO, IL (July 16, 2012) - Twelve dedicated runners are set to participate on Team CdLS in the famous Bank of America Chicago Marathon on October 7th.  Team members are among an estimated 45,000 participants in the 26.2-mile run. The team's goal is to raise $50,000 for the CdLS Foundation, based in Avon, CT.

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Avon organization accepted into federal rare disease pilot program

07/09/12
The Cornelia de Lange Syndrome (CdLS) Foundation is one of just 34 organizations from around the country accepted into the National Institutes of Health's (NIH) Global Rare Disease Patient Registry and Date Repository (GRDR) pilot program.

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CdLS in the News

Riverton Resident Tapped To Lead National Nonprofit

11/19/12 , Hartford Courant
The Board of Directors of the Cornelia de Lange Syndrome (CdLS) Foundation unanimously approved the appointment of Marie Concklin-Malloy as its new executive director, effective Nov. 10. 

Local Man Tackles Ironman Triathlon for CdLS Foundation

11/15/12 , Hartford Courant
Frank Mairano, of Collinsville, Conn., is no stranger to tough races. He has run 20 marathons and sees no sign of stopping anytime soon. 

Three Join Hartford Foundation Staff

11/14/12 , Hartford Courant
Jennyfer Holmes of New Britain has been named scholarship and donor services officer at the Hartford Foundation for Public Giving, the community foundation for the 29-town Greater Hartford region. Read full story >

Local woman runs in NYC Race to benefit those with rare syndrome Read more: Holly Springs Sun - Local woman runs in NYC Race to benefit those with rare syndrome

10/29/12 , Holly Springs Sun
Claire Lindsay of Holly Springs, NC, is running in the ING New York City Marathon on November 4 as a member of the Cornelia de Lange Syndrome (CdLS) Foundation's, Team CdLS. 

Locals Raise Awareness, Funds For Rare Genetic Disorder

10/10/12 , Hartford Courant
The Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit family support organization, is proud to have five runners as part of Team CdLS in the 2012 ING Hartford Half Marathon and 5k on Saturday, Oct. 13. Read full story >

Marathon Man

08/15/12 , Journal & Topics Newspapers Online
A Mt. Prospect man will run for the second year in a row in this October's Bank of America Chicago Marathon to raise money for his daughter who is battling a genetic disease. 

Novel Cornelia de Lange syndrome gene discovered

08/13/12 , MedWire
MedWire News: Scientists have discovered that mutations in the histone deacetylase 8 gene (HDAC8) can cause the rare genetic disorder known as Cornelia de Lange syndrome (CdLS), which is characterized by intellectual disability, limb deformity, and other disabilities resulting from problems in early development. Read full story >

Elmhurst professor receives honor from national organization

07/09/12 , MySuburbanLife.com
The Cornelia de Lange Syndrome (CdLS) Foundation honored Elmhurst College professor Marjorie Goodban with the John King Award on June 23. 

Guy Pearce's Life Lessons From Wife And Sister

06/11/12 , IMDB
Australian actor Guy Pearce has credited his wife and his sister with keeping him grounded throughout his Hollywood career.