Since raising awareness of CdLS is a huge priority for me, you can imagine my delight when a young girl with CdLS was featured on CNN.com–the cable giant’s popular web site–this week. Four-year-old Maya Pomfret from Georgia is one of the “stars” of a photo-web feature about a swimming program (www.swimmerman.com) near Atlanta.
Follow the link below and see for [...]
I have always been a fan of the personal interviews of StoryCorps, an oral history project that is broadcast each Friday on National Public Radio (NPR), but today was especially meaningful for everyone who cares for someone touched by Cornelia de Lange Syndrome.
Thom and Karen Horsey share the joy and grief of loving and losing their [...]
For the third year in a row, friends, family and complete strangers gather in Decatur, GA, to run for the CdLS Foundation. The inspiration behind the For the Love of It 5K is three-year-old Maya Pomfret. As you can imagine, Maya (below) has captured the heart of many a runner, and even a local newspaper [...]
The Highberger family of Nebraska really knows how to throw a party. For their son Colt’s 10th birthday bash, several hundred friends and family came together to celebrate Colt and to raise money for the CdLS Foundation.
This is the third year in a row the Highbergers have included local residents in Colt’s birthday celebration. No surprise, Colt is [...]
