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!
Behavior Articles
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 2005 - Miami, Florida
Once again, the CHARGE Syndrome Foundation planned and presented a wonderful conference. I was thrilled to have been accompanied for the first time by Graeme, who also thoroughly enjoyed it. The highlight for me was having the adults with CHARGE syndrome get up to do a speech and then entertain questions from the crowd. When I say "entertain" I mean "entertain" - these young people gave wonderful and witty speeches and had the crowd in stitches with their great sense of humour. I think they are amazing and that they have done so much for the younger families who are still wondering what to expect!
If you would like to view the photos that we took on our trip to the conference, please visit: Graeme & Lisa's Miami Photos.
Thank you to everyone involved with this wonderful event. Future conference information can be found at the CHARGE Syndrome Foundation web site.
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.
If you would like to view the photos that we took on our trip to the conference, please visit: Our California Pictures .
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.
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CHARGE Syndrome Listserv I've been moderating this listserv since '99, so if you have any questions at all please contact me. |
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Other Helpful Sites |
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CHARGE Syndrome Photo Site: If you are interested in seeing a lot of other really CUTE kids and AMAZING teenagers and adults who also have CHARGE syndrome, please visit the:
CHARGE Syndrome Photo Site.
I started this site for the photos because the listserv photo space was limited and I wanted as many families who wanted to send in photos of their child to be able to. |