7 December 2009 – Just in case you haven’t seen it yet, I want to let everyone know about the new and improved MECP2 Duplication Syndrome Website and to congratulate everyone involved on a job well done. First, Pam Albert, deserves everyone’s thanks for her dedication to the cause of better lives for children with MECP2 Duplication Syndrome and their families that goes far beyond just the website. The original website was a great asset to our family because it started to link us with other families and I know many other families feel the same way. Like all parents of children with severe disabilities, Pam has had more than enough on her plate to keep her busy, and she deserves a great deal of credit for the vision, energy, and organization to go beyond her own family to reach to all of us.
Thanks also to the students at Penn State University – Harrisburg for doing a great job of updating the new website. It looks good and it works well. I think that they did a great job. If anyone would like to add their notes of appreciation using the comments section below, please do! Even better, go to the community forum section of MECP2 Duplication Syndrome Website, Register or sign in and leave a comment there.
Also, consider contributing to any of the forum topics. This would be a great time to get some active discussion on the site. I have to admit that I had a bit of trouble figuring out how to post to the forum. So if that is holding you up, just sign in or register. Once signed in, click on the topic taht best fits what you want to say. Then you can click on “New Topic” on the darker green menu bar on teh right side of the page and you’re ready to write your comment.