CHARGE Syndrome Links

Kennedy Brownies 2005Kennedy Camp 2005Kennedy Halloween 2005

 |HOMECONTACTSKENNEDYCHARGE| BLOG|

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 .

CHARGE CONFERENCE 2009 - Bloomingdale, Illinois
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.
Assorted CHARGE Links
  • CHARGE Syndrome Foundation
  • Assorted CHARGE articles
  • CHARGE Association/Syndrome
  • National Organization for Rare Diseases CHARGE article
  • The CHARGE Family Support Group -- UK
  • German CHARGE Syndrome Group
  • Canadian CHARGE Syndrome Group

    CHARGE across Europe
    Expedition Earth: In February 2008, Tina, Ruan and their dog Akela, will embark on an 8000km trek on foot across Europe to raise awareness about CHARGE Syndrome. Please click the logo above to visit them and read more!

  • CHARGE Families Online
  • Adele's Site - username:baby      password:sugar
  • Minnow's CHARGE WebPage
  • David's CHARGE homepage
  • Melissa's Home Page
  • Mannula's Home Page
  • Chantelle's Home Page
  • The Williams family homepage
  • Susy's CHARGE page - in Spanish
  • Cheyanne's Home Page
  • Cameron Anderson's Blogspot Page
  • Mighty Max's Blogspot Page
  • Ben Russo's Web Site
  • Evan Storr's Web Site
  • Maya Kelly's Web Site
  • Cedie Lynn Mock's Blog
  • Eva Masionis' Web Site

    ***Please check Kennedy's blog:  http://chargesyndrome.blogspot.com for a more thorough listing of families - there are oodles!***

  • CHARGE Syndrome Listserv
    This is a link to join the CHARGE Syndrome listserv, with over 1300 members from all over the world; this is the most valuable source for information and support regarding CHARGE Syndrome I could point anyone to!

    I've been moderating this listserv since '99, so if you have any questions at all please contact me.

    Subscribe to CHARGE
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    Other Helpful Sites
  • Special Child Magazine
  • A Guide to Closed Captioning Technology
  • Family Village
  • DeafLinx
  • Deaf Blind Link
  • Listen Up! - info about hearing, aids, etc
  • The Canadian National Society of the Deaf-Blind, Inc.
  • TheCanadian Deafblind and Ruebella Association
  • Deafblind UK
  • Deafblind Info
  • Katelyn's Hope
  • Deaf Children
  • Resources for Learning Disabilities
  • G-Tube Information
  • Fundoplication Information
  • Deafblind Info
  • Cranial Nerve Information
  • Choanal Atresia - clear x-ray of bony choanal atresia
  • Another Choanal Atresia Page
  • Coloboma Information
  • Kids with Heart
  • Congenital Heart Disease Info & Resources
  • PediHeart Website
  • Heart Disease Resource Library
  • Heart of a Child
  • Online Medical Dictionary
  • Online Drug Information
  • I'm Tyler - an amazing video made by a high school student whose mission is "to educate the world about Ability Awareness" VERY POWERFUL!

  • 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.