CHARGE Syndrome Links
This is an assortment of links to web sites or articles we have accumulated over the years about CHARGE syndrome and Kennedy's associated conditions. If you find any broken links or know of any that should be included, please email me. Thank you!
In January 2005, the American Journal of Medical Genetics devoted an entire special section to CHARGE Syndrome; these articles pertained in particular to the behaviors seen in individuals who have CHARGE syndrome. The group has granted access to the CHARGE Syndrome Foundation (US), and the articles can be found here.
CHARGE CONFERENCE 2007 - Costa Mesa, California
This was my first year as a board member for the CHARGE Syndrome Foundation and so it was my first year working with them and seeing just how much goes into a conference. It was also e & Kennedy's first conference. They both enjoyed themselves very much. I was pretty worn out by the end of it but it was a great time and I was so happy to be a part of it.
This was the largest conference the CHARGE Syndrome Foundation hosted, with over 750 attendees. It was a great deal of work as we morphed into the 21st centure with online registration, computerized check-outs for the silent auction and so on. Another first was our "Professional Conference" which took place 1 day before the other conference. It was well-attended and very successful. We also had the first "Conference Idol" which was a huge hit with the 500+ people who came out to see the stars perform. This was as close to having my whole family there as I've ever gotten, with Graeme, Kyle (who worked the whole conference with the kids at camp), and our own little star, Kennedy. Ryan, my oldest son, has moved away and wasn't able to come. He did, however, make it to the 2003 conference in Ohio, though.
If you would like to view the photos that we took on our trip to the conference, please visit: Our Bloomingdale Pictures.