CHARGE Syndrome Foundation

The Foundation - Board Profile

Matt Murray and Justin

My name is Matthew Murray. My wife Janet and I live in a suburb 20 miles south of Boston. We are the proud parents of Joshua (16), Justin (16), and Julianne (11). When Joshua and Justin were born, it was clear that there was something wrong. Justin was transferred to New England Medical Center's Floating Hospital for Children. He came home after a month but it was obvious that there were unresolved issues. Over the next year and a half, we were constantly blind-sided by new medical concerns: hearing, vision, neurological, and growth. This was in addition to the complicated heart condition he had been diagnosed with at birth. Finally, in August of 1993, just 3 weeks after the St. Louis conference, we received the diagnosis of Charge syndrome.

The following few years were filled with multiple appointments. Having the Charge diagnosis did not change Justin, it just helped to maintain perspective and have others to connect with. Finding the Charge Syndrome Foundation was a blessing.

At my wife's urging, I ran for a position on the Board of Directors. I have been involved in site selection for the past conferences since Boston 1997. I work in hotel maintenance and this gives me a unique ability to help define what the conference needs are and what a hotel can realistically offer.

You can contact me at matt@chargesyndrome.org.