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Karen Lyons' Fundraiser:

Cornelia de Lange Syndrome Foundation NYC 2013

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Karen Lyons

THE STORY:

In November 2007, Luke was born and we thought he was perfect! But just hours after his birth, the pediatrician noticed that Luke had many physical characteristics of a condition called Cornelia de Lange Syndrome (or, CdLS.) Pat and I had never heard of it, and had no idea where to turn for help.

Thankfully, we found the CdLS Foundation, which connects families, offers support and services, and taught us that raising a child with special needs was not a tragedy! There is no cure for CdLS but you can help ensure services and programs for families remain by supporting the CdLS Foundation—the only organization of its kinds in the country.

So what is CdLS? Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally. CdLS does not discriminate—it’s seen in all races and ethnic backgrounds. The occurrence of CdLS is estimated to be 1 in 10,000 live births.

CdLS is not a “one size fits all” condition.

As with many other syndromes, individuals with CdLS strongly resemble one another. Typical facial features include thin eyebrows that meet in the middle, long eyelashes, a short upturned nose, and thin downturned lips.

Other characteristics include low birth weight (often under five pounds), slow growth, small stature, and small head size. Other features may include excessive body hair and small hands and feet. Common medical issues include gastro- esophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences, including missing arms, forearms or fingers, are seen in about 25 percent of individuals with CdLS. Behavioral and communication issues and developmental delays often exist.

Please consider helping me support the CdLS Foundation as I run 26.2 miles for the first (and probably only!) time! :-)

$4,140

MONEY RAISED
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  • The Maguire Family

     

  • Hillner Clan

     

  • Sofia Sinclair

     

  • Dmytruk family

     

  • Steve and Karin Scott

     

  • Barb Abboud

     

  • Jackie Garnett

     

  • The Metcalf Family - Diane, Steve, Lauren & Sienna

     

  • Joe & Diana Doerrer

     

  • The Hodgson Family

     

  • Barbara, Chris & Lucy Morgan

     

  • Calliope Shortill

     

  • Donna Bungo & Kathleen Warnock

     

  • Kelly & Chris Mangum

     

  • Tim Dargan

     

  • Bob Cherry

     

  • Megan Boyle

     

  • The Nestor Family

     

  • Rob Ferullo

     

  • Trent, Lanée, Kyrie & Tate Johnson

     

  • Lyons Family Yard Sale - Go Karen Go

     

  • Lorrie Jones

     

  • Briana Carrigg

     

  • Eddy Mahina Brattin

     

  • Jeff & Paige Brattin

     

  • Nanea May Brattin

     

  • Rebecca Conway

     

  • The Gaudreaus

     

  • Eileen & Ed Bradbury

     

  • Frank and AnneMarie Frascella

     

  • John McCune

     

  • Martin Family

     

  • The Cole Family

     

  • Thurston Howls Bove

     

  • Michael Lavoie

     

  • Forbes family

     

  • Peter Sherwood/David Freiberger

     

  • Kristie, Doug and Aquinnah

     

  • Scott Rezek

     

  • The Pentathlon guys

     

  • The Panella Family

     

  • Jamie and Steph Brewer

     

  • The Biddle Family

     

  • Anna, Cal and Ava

     

  • Lincoln & Harrison Smith

     

  • Nana

     

  • IntraSystems Golf Event

     

  • The Halepis Family

     

  • The Rice Family

     

  • Toby and Amanda

     

  • Liz Snow and family :)

     

  • Cooper and family

     

  • Ellen Shortill

     

  • Mark, Kelly, Mikayla & Ben Kelly

     

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166% Raised of$2,500 Goal

Fundraise for this Campaign

The Team: $18,401 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Susan and Frank Leone

Amount Raised

$4,790

 

96% Raised of$5,000 Goal

Fundraiser Title

Karen Lyons

Amount Raised

$4,140

 

166% Raised of$2,500 Goal

Fundraiser Title

Sarah Zaman

Amount Raised

$3,076

 

123% Raised of$2,500 Goal

Fundraiser Title

Ryan Auster

Amount Raised

$3,060

 

122% Raised of$2,500 Goal

Fundraiser Title

Jeremy Martin

Amount Raised

$2,835

 

113% Raised of$2,500 Goal

Fundraiser Title

Brian Halbreich

Amount Raised

$500

Fundraiser Title

Cornelia de Lange Syndrome Foundati...

Amount Raised

$0

 

0% Raised of$17,500 Goal

Donor Comments

Mark, Kelly, Mikayla & Ben Kelly

Mark, Kelly, Mikayla & Ben Kelly

Karen, we're so proud of what you've accomplished and we wanted to give something to support Luke and the rest of your family. 6 years ago

Ellen Shortill

Ellen Shortill

Go Karen go! 6 years ago

Cooper and family

Cooper and family

Woo hoo!!!! 6 years ago

Liz Snow and family :)

Liz Snow and family :)

Karen, you are amazing !!! Give hugs to Luke for me :) 6 years ago

Toby and Amanda

Toby and Amanda

Cheers and best wishes to the Shorthill crew and especially Luke! 6 years ago

The Rice Family

The Rice Family

Go KAREN! 26.2, BABY! 6 years ago

The Halepis Family

The Halepis Family

6 years ago

IntraSystems Golf Event

IntraSystems Golf Event

6 years ago

Nana

Nana

6 years ago

Lincoln & Harrison Smith

Lincoln & Harrison Smith

For cousin Luke! 6 years ago