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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, three granddaughters: Taylor, Marissa, and Summer as well as a grandson, Seth. I am currently employed with the Atlantic Provinces Special Education Authority (APSEA) as the New Brunswick & Nova Scotia Consultant for Students who are Deaf with Additional Challenges. 

I became involved with the world of CHARGE syndrome when Kennedy was born and diagnosed with it in 1998. Since that time, I was involved in a number of CHARGE-related projects in Canada and moderated a 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.  It is my honour to give back to the Foundation, which has certainly been a lifeline for our family. 

During the current term, I am chairing the Outreach and Advocacy Committee, which includes maintaining the Foundation web site as well as Social Media and 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 am also involved with the general conference planning team and am the program chair for the 12th International CHARGE Syndrome Conference, which will take place July 30-Aug 2, 2015 in Chicago, Illinois.

Please feel free to contact me anytime with any questions.