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The Foundation - Board Profile

Lisa Weir

My name is Lisa Weir and I live in Saint John, New Brunswick, Canada with my husband Graeme and our daughter Kennedy.  I also have two grown sons: Ryan and Kyle, two granddaughters: Taylor and Marissa, and a grandson, Seth. I am currently employed with the Atlantic Provinces Special Education Authority (APSEA) as an itinerant specialist teacher for students who are deaf or hard of hearing. 

I became involved with the world of CHARGE syndrome when Kennedy was born and diagnosed with it in 1998. Since that time, I have been involved in a number of CHARGE-related projects in Canada and have been moderating the CHARGE Syndrome Listserv since 1999.

In March of 2007, it was my pleasure to join the Board for the CHARGE Syndrome Foundation as its first international director, and the Executive Committee in June, 2007 as secretary. In July, 2009, I switched roles on the Executive Committee to Vice President.

During the upcoming term, I will be chairing the Communications Committee, which includes maintaining the Foundation web site as well as other online projects, overseeing the publishing of the online CHARGE Accounts newsletter and looking after any other public awareness or communications issues that arise. I will also be working on the conference planning team for the 12th International CHARGE Syndrome Conference, which will take place July 30-Aug 2, 2015 in Chicago, Illinois.

If you have any questions, are interested in being part of the Communications Committee or assisting with the 12th International CHARGE Syndrome Conference in 2015, please contact me.