CHARGE Syndrome Canada Newsletter fall 2008 No.17 © copywrite |
Puberty disorders link to CHD7
Past Edition of the Newsletter
CHARGE Syndrome Canada 7th Annual General Meeting
CHARGE Syndrome Canada held our 7th Annual General Meeting, this time back in Ontario. Krista, a young adult who has CHARGE syndrome, has been an inspiration for families and professionals. As the newly elected President, she has a plan to bring awareness of CHARGE to everyone in the community. She has the enthusiasm that will help bridge families together and join with community efforts. She believes that mentorship is needed in the young CHARGE population, and is asking for parent's help to see this happen in Canada.
In this the 7th Annual General Meeting, the "head-office" was motioned to move back to Ontario, which is a process that began when Ann Gloyn from Ontario was elected President in 2006. While Ontario has excellent services already established for populations with sensory loss, it is part of the operational bylaws that move the "head-office" of the National organization to where the President resides, and this official process is in completion.
When the organization "head-office" was in St. John's New Brunswick, the identification study being done out of IWK in Halifax began with "0" children in Alberta listed. Good planning brought the awareness of CHARGE Syndrome into Alberta with the organization having a presence there. As a result of the great work of the leadership team of Ann Gloyn and parent Cydne Park, many more children and young adults were identified in the Province of Alberta. Cydne has since moved into Saskatchewan and continues to be an advocate for all children who have disabilities.
During the AGM, fundraising guidelines were reviewed with membership. Funding requests can be submitted from individuals who have CHARGE syndrome from across Canada. However, because the organization is totally reliant on volunteer efforts, the "request to fundraise" is approved by the Board and depends on available financing. Individuals who make requests are asked to be involved in the fundraising efforts when possible. Not all funding requests are able to be fullfilled.
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