About our Founder

 

Elizabeth McHenry, CMA Founder

By Aeneas Lane

The founder of the Canadian Marfan Association (CMA), Elizabeth McHenry, passed away on June 15th, 2007 at the age of 57.

Liz laid the groundwork for the Association in the mid 1980’s when she submitted a funding proposal to Health and Welfare Canada called “Arresting a Silent Killer”. When the now famous Sports Illustrated article on the sudden death from Marfan Syndrome of Flo Hyman-the American volleyball star appeared in 1986, Liz became aware of the National Marfan Foundation in the United States. She aquired the names of Canadian Marfan patients who had contacted the NMF from Priscilla Ciccariello. That’s when I got a call from her.

With the support of her husband, Michel Ouimet, her cardiologist-Dr. Chan, Scott McAlear and his family, and other families in the Ottawa area, Liz started the Association and the first issue of Newslinks was produced in February 1988.

In May of 1989 a group of interested Marfan patients and their families were invited to Ottawa to form the first board of the Association. That’s when I actually met Liz and her husband, Michel.

In an early issue of Newslinks, Liz wrote about meeting the teenaged Scott McAlear. Scott was the first person she had ever met who also had Marfan. “It was like that for me. Liz and others at that meeting were the first people I’d ever met, outside my own family, who had Marfan. What a relief it was to discover that I wasn’t alone!”

According to Michel, Liz has that kind of lasting impact on those she met. At her memorial, he read a letter from a fellow camp counsellor who had met Liz when they were both in their teens. Friends and family paid tribute to her artistic flair expressed in her love of music and poetry, to her sense of humour, to her passion and compassion.

Liz’ impact, of course, was felt strongly by those of us who have benefited from the work of the Association. Today, with information via the Internet available at the click of a mouse, it’s easy to forget just how hard it was twenty years ago to find information about Marfan and connect with others. That experience of discovering that you’re not alone, that there is a source of information and support our there, has been felt by thousands of others since. Whether you knew her personally of not, Liz had an impact on you too. It was her original vision, of a Canadian Marfan Association that focused awareness, education, and support, that still guides the Association today.

Liz served as President and Executive Director of the Association until 1990 when she suffered a stroke. She spent many years overcoming her physical difficulties, regaining her speech and her mobility without ever losing her sense of humour. She was supported by a strong circle of friends and family, particularly the love of her life, Michel.

A funeral mass was held for Liz on July 7th, 2007 at St. Mark’s Church in Aylmer, QC. She is missed by Michel; their son, Jonathan; his wife, Suzy; their granddaughter, Megan; and many family and friends.

Her family requests that if you would like to honour her memory, please do so with a donation to the Association. Thank you.