About this blog

The Foundation’s blog was started to make connections. We hope to connect with families, doctors, friends, and whoever else drops by to read about Cornelia de Lange Syndrome and the CdLS Foundation. We have so much to share and even more to learn about you. The blog allows us all to talk on our own terms and convenience. It serves as a pipeline for sharing Foundation news, research updates, and details about upcoming CdLS events on a more current basis. Less need to wait for Reaching Out. (It is not a place to discuss medical issues nor is it a support group forum—those services are available through the Foundation web site.)

The “keepers of the blog” are Darrell Cookman and me, Marie Malloy (learn more about us below). In addition to keeping you informed and interested, we will monitor all comments before they are posted. That means that your comment may not appear immediately, especially during the weekend. We don’t expect any bad behavior, but we hope you understand the added layer of security. So, please register and keep coming back for news and updates. And now, a word from our moderators…..

About Marie

Marie joined the Foundation staff in February 2006 as Director of Public Affairs. It’s her job to raise awareness of CdLS across the country through media relations, government affairs and community outreach. She also oversees the volunteer Awareness Coordinator program. Before joining the Foundation, Marie put her English degree to work in public relations, teaching and journalism. She lives in northern Connecticut with her husband, young son and two dogs.

Books currently on my nightstand	Picking Your Battles: Winning Strategies for Raising Well-Behaved Kids and lots of kitchen and bathroom renovation  magazines
Favorite TV show(s)	Law & Order, What Not to Wear, Wife Swap (no kidding)
What’s the car radio tuned to?	CNN on satellite radio or NPR
Last movie seen in a theatre	The Illusionist
Dream vacation	Greece
Grew up …	on a 400-acre apple farm in the Hudson Valley Region of New York
First job	Scooping ice cream

About Darrell

Darrell has been with the Foundation since 2000 when he came on staff as the Director of Communications (he edited Reaching Out, Facing the Challenges, and numerous other publications). In May of 2002, he became the Director of Individual Giving, the Foundation’s primary fundraising staffer, responsible for fund drives, special events, chasing grants, and encouraging any other funding of Foundation programs and services. Darrell has worked as an English teacher, football coach, test administrator, and in sports information for the University of Connecticut. His wife and he have just celebrated their 15th wedding anniversary and enjoy a seven-year-old son and three-year-old daughter.

Books currently on my nightstand	Middlesex by Jeffrey Eugenides
Favorite TV show	Lost
What’s the radio tuned to?	Local news talk, the ball game (any season), NPR
Last movie seen in a theatre	The Simpsons Movie - No, really
Dream vacation	New Zealand
Grew up …	in the Sonoran Desert (Tucson, AZ)
First job	Hawking popcorn and Pepsi at University of Arizona football games