Press Room Home > January 2017 Archives

Randolph Southern CdLS Awareness

01/31/17
The Randolph Southern Spirit Store will be hosting a CdLS Awareness Night on Thursday, February 2, 2017 during the Boys Basketball game against Daleville. The guest of honor for the game will be Randolph Southern's own Ike Dalzell.
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Girl, 11, to get wheelchair makeover for Barrier Free 5K

01/27/17
The city of Boynton Beach is putting on the fifth annual Barrier Free 5K Chairty Run, Walk & Roll at Congress Avenue Barrier Free Park.

The night before, the city is having Magic Wheels & Special Deals, and will unveil a Magic Wheelchair, being cuilt by the city's project manager Kevin Ramsey and Boynton Beach Police Officer Will Rodriguez for 11-year-old Emma Pietrafesa.

Emma, a student at Atlantis Academy in Coral Springs, was born with Cornelia de Lange syndrome.
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Realtors® Association to Host 5th Annual Barrier Free 5K Charity Run

01/26/17
Washington, D.C. -- The Realtors Association of Palm Beaches (RAPB), in partnership with the City of Boynton Beach, will host their 5th Annual Barrier Free 5K Charity Run, Walk & Roll at Congress Avenue Barrier Free Park on Saturday, February 11.

RAPB is proud to announce that our honorary starter will be 11-year-old Emma Pietrafesa, who has Cornelia de Lange syndrome.
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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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Coffee Shop, CPD Team Up to Raise Funds for Officer's Ill Daughter

01/07/17
Members of the Charlottesville community didn't let the snow stop them from coming out Saturday afternoon to donate to a police officer's family in need. Shenandoah Joe on Preston Avenue helped raise some cash for Charlottesville police officer Eric Ketchum's daughter Jolie.

Jolie was born with Cornelia de Lange syndrome, a rare genetic disorder that causes a range of physical, cognitive and medical challenges.  
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Donations sought to help daughter of city police officer

01/06/17
The young daughter of a Charlottesville police officer is recovering from a serious illness, and on Saturday, Shenandoah Joe Coffee Roasters will match all donations to help with her medical expenses.
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Community News For The Valley Edition

01/03/17
Avon -- The Cornelia de Lange Syndrome Foundation raised over $6,000 on Giving Tuesday in November.

"This platform helps us maximize our fundraising outreach and create awareness for CdLS and the Foundation," said Development Manager Kristi Larson.
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