Hello… check, check, is this thing working?
True, a rather silly way to begin a blog, but we are (at least I am) willing to be a little silly in order to reach out to people we’ve never really connected with before.
“Connecting” is what we do. Connecting parents with parents, children with doctors, and relatives and friends with each other. All in the spirit of improving the lives of children with CdLS (that’s Cornelia de Lange Syndrome to those of you who may be wondering why I would be writing about certified driver’s licences).
My name is Darrell Cookman and I am the Director of Individual Giving for the CdLS Foundation. Marie Malloy (the Foundation’s Director of Public Affairs) and I are writing this blog to create a different, fun (we hope) and informational connection between the CdLS Foundation, what we do to serve people and the people we serve.
Amidst captivating information about advocacy and research efforts, we will shamelessly promote Foundation-sponsored events and family appearances in the media while relentlessly encouraging you to link to various areas of our website.
Why? Connection. Involvement. We can serve you better the more we know what you need and want.
What speaks to you about what we do?
What do you believe we should be doing more often or instead?
Not sure what it is we do? That’s exactly why we’re blogging! Keep reading, we will try to fill in the blanks. If you have questions, let us have them. Suggestions? We definitely want those.
Register with WordPress (for directions, click How to Register up top) to respond to what you read here. Comment early and often. We look forward to hearing from you.
11 Comments
November 3, 2006 at 6:53 pm
Hey guys!
May I add your link to Will’s blog?
November 3, 2006 at 7:22 pm
You sure can, Beth! Thanks. Great job in the Chicago Marathon. You’re my hero.
November 3, 2006 at 8:48 pm
Thanks Darrell. We had a blast this year!
November 6, 2006 at 6:06 pm
Hi, this is a great idea! I’ll have to add a picture to my profile. Darrell, now that I see your picture, I remember you from the conference. I am Angela Barton, mom to Audrey, daughter of Dave Viland who you spoke with a number of times at the conferene.
November 6, 2006 at 6:35 pm
Angela,
Thanks for posting! It was great to meet your family at conference and to re-connect with your father at the recent board meeting. He has already established himself as an articulate and thoughtful presence.
But this is no surprise to you, I’m sure.
We are so fortunate that your family has become as involved with Foundation as it has. Audrey’s photos alone are simply priceless.
November 6, 2006 at 7:40 pm
This is great. I provide residential care and rehabilitation services for Medicaid Waiver consumers. I currently have a young lady with CdLS. Her behavior is quite a challenge and I could use some good advice. Thanks
November 6, 2006 at 11:07 pm
Hello,
I agree, this is a great idea. My name is Danielle, I have a 7 year old daughter, Delaney, who was diagnosed a year ago. We haven’t had any conferences close, but hope to attend one someday soon. I am looking forward to reading your comments and learning more.
November 7, 2006 at 8:02 am
Hi, My name is Melissa and my daughter Mary was diagnosed when she was 7 months old. She is currently 17 1/2 months old and doing great. I am so happy to have yet another web / advice area I can go to and now better yet a place where i can leave a message and have a return answer. This is a great idea. Learning more about her syndrome only allows me help her more. OH !!!! Great news, Mary sat unassisted yesterday for the 1st time all by herself from a lying position. It was a GREAT DAY!!!
November 7, 2006 at 11:49 am
Hello! Thank you for taking the time to look in and, especially, to register and comment.
It is great to hear that Mary is sitting up (today the sit, tomorrow the world!) although we won’t be discussing specific medical issues here. Sorry about that MurphyHouse130 (I will email you off-line).
To avoid duplicating efforts or getting out of our element, we will leave the advice to the professionals that the Foundation has brought together on families’ behalf.
If you ever need to connect with experts, information or other families who can help, call the CdLS Foundation directly (1-800-223-8355) or visit the Foundation web site (www.CdLSusa.org).
We are excited to talk about what more the Foundation can do to help children with CdLS and how we can work together to make it happen.
November 10, 2006 at 9:25 pm
Great job Darrell and Marie! This is a nice addition to the site.
November 12, 2006 at 3:06 pm
Darrell and Marie–you are off to a great start! Looking forward to lots of great things about CdLS in the world of blogging! Christy W.