CHARGE Syndrome Canada Newsletter Summer 2008 Vol. 1 No.16 © copywrite |
MOBILITY OPPORTUNITIES VIA EDUCATON (M.O.V.E.)
TRANSITION RESOURCES
Past Edition of the Newsletter
OUR ANNUAL GENERAL MEETING FOR 2007 -08 WILL BE HELD ON SAT SEPT 13 AT HAMILTON PUBLIC LIBRARY, 55 YORK BLVD. HAMILTON ON at 1:30 pm
Tracey Stockley, Association Director, Molecular Genetics Laboratory, at The Hospital for Sick Children in Toronto has announced that the molecular analysis for CHARGE syndrome has now been established here in Canada. After the initial gene was discovered by researchers from the Netherlands in 2004, individual analysis done for Canadian families was either sent to the US for the Baylor Institute study, or flown to Britain or Netherlands.
The Hospital for Sick Children lab has now set up and validated the molecular testing for the CHD7 gene, and has launced this as a clinical diagnostic test. Families that may be interested in this testing and are from other Provinces, can arrange to have samples sent from out of Province and financial coverage for the testing can be arranged.
President's Message
This is just to inform everyone what is happening with CHARGE Syndrome Canada, and what our plans are for the future.
I was thinking about different ways we can all help in raising money. I have individually raised money this summer for CHARGE Syndrome Canada with a garage sale and plan on having another one in two weeks. I challenge you all to do the same!
We are also hostly a silent auction on E-Bay for a Walter Gretzky autographed end table, made specially by the students at the W. Ross Macdonald School. I also am planning a Hallowe'en Party this fall with donations specifically to go for CHARGE Syndrome.
The 9th Annual International CHARGE Syndrome Conference is being held this year in Bloomingdale, Illinois. There will be forms soon available for any individual who wishes to attend and requires financial assistance. We'll help you as much as we can, but it depends upon how much money we can raise!
There is also the CHARGE Book that is in the planning. Anyone who is still interested in doing this, please write us.
Thanks. Sincerely yours; Krista.A CALL FOR VOLUNTEERS
As Past President, I am helping Krista with the task of learning the operations of a National non-profit organization. Please offer your help and assistance as we endevour to keep CHARGE awareness out there in Canada!
~ ann gloyn
fax 519-758-9919
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