CHARGE Syndrome Foundation

The Foundation - Board Profile

Lisa Weir - Vice President, CHARGE Syndrome Foundation

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, a granddaughter, Taylor, and a grandson, Seth. I am currently working for the Atlantic Provinces Special Education Authority (APSEA) as an itinerant 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, a position I will continue to hold throughout the 2011-2013 term.

During the 2011-2013 term, I will be co-chairing the Communications Committee along with Leslie Kauffman. Together we will be 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 have also accepted the position of Conference Chair for the 2013 conference, which will be held in Scottsdale, Arizona.

If you have any questions, are interested in being part of the Communications Committee or assisting with the 11th International CHARGE Syndrome Conference in 2013, please contact me.