CHARGE Syndrome Canada held our 2nd Annual General Meeting in Toronto where we welcomed new President Cydne Park from Alberta. We wish Lisa Weir success in her studies. Perhaps the MOST exciting news is the information on the gene found in the Netharlands in 2004 which is related to some cases of CHARGE Syndrome. Testing for the gene can be done at the Clinical Genetics Center, Nijmengen, Netharlands. It is the most labour intensive test to be offered in the world, and will cost about $1000 (Canadian) Not all chldren with CHARGE syndrome were found to have the gene, and it was not carried in the parents. We offer this late addition of the newsletter to all contacts with our token of appreciation for continued support, contributions, and donations. Members will be able to request our two new booklets electronically: "Introducing CHARGE Syndrome" and "The CHARGE Syndrome Care report" as well as copies of our "Year in Review".
 Parents Help Requested for Study! As many of you know Dr. Kim Blake from the I.W.K. Health Center lead a study to determine how many individuals were diagnosed with CHARGE Sydnrome in Canada. Data shows that CHARGE Syndrome is still under-recognized. It is believed that probably 1:10 000 below age 13 probably have CHARGE Syndrome. We need for both parents and professionals to keep submitting data with age/sex/location of these children.
A follow-up study now being conducted is asking for parents help in a more detailed look at the patterns and development of behaviour of children with CHARGE Syndrome. Leading the study is psychologist Dr. Isabel Smith, who will conduct telephone interview with parents and ask them to fill out a questionairre. For more information contact |
"Sharing Visions" conference - WRMS
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