A Family Connection
For one Muscular Dystrophy Canada family, the connection to the organization goes back almost 60 years. Ken Killen was a career Fire Fighter with the Kingston Fire Department, and began volunteering with the Muscular Dystrophy Association of Canada in the late 1950s, a connection that carries on today through his daughter Debra Chiabai, and grandchildren Alex and Kate.
“My father was a career Fire Fighter in Kingston. He often had part time jobs in his off hours (bus driver, photographer, taxi driver) since in the early years it was not a particularly well paid job. Even though he was very busy with his full and part time work, he always made time to volunteer. The Fire Fighter charity of choice, then as now, was the Muscular Dystrophy Association of Canada,” remembers Debra. “I know he had a leadership role which I think would now be called Fire Fighter Advisor, but I’m not sure if that was just for his department or if it was more regional. He was responsible for a number of years for running the Kingston Telethon Centre and he also made frequent trips to the televised location in Watertown, New York to speak on behalf of Fire Fighters, co-host and to receive and deliver cheques. He would also take co-lead/coordinate the local canister drive and other events like McHappy Day. He also dressed up as a clown for fundraising events and to participate in the annual Kingston Santa Claus parade.”
Debra would help out her dad with his volunteering duties when she could, “I loved to count the change from canisters. The mountain of change on the dining room table always looked huge and it was fun to see it slowly turn into rolls of coins. I became a really proficient roller of coins.”
“I also remember helping out with collecting coins at McHappy Day. I was quite young but I remember being struck by how drawn he was, in particular, to interacting with the children with muscular dystrophy. He was a natural both in knowing best how to help them while also giving them respect and a sense of dignity. I also remember answering the phones at the telethon at quite a young age and being very proud that MY Dad was on TV or running operations at the telethon centre.”
Her close interaction volunteering with her dad left a big impression, “I don’t really remember him specifically teaching me about muscular dystrophy or the Muscular Dystrophy Association of Canada, but I gained a lot of impressions and attitudes about volunteering, and respect for people with disabilities through watching him interact with both people with disabilities and his peers. I was always aware of his leadership role and his mentoring of younger firefighters to get them involved in the cause. He also was never afraid to ask people for donations or services to help the cause.”
Debra took what she learned from her father with her through her life, volunteering at Telethons, and getting involved with other charities and mentoring programs when she moved away from Kingston. When Debra and her husband Lawrence welcomed twins Alex and Kate in 2000, she did not know that the Muscular Dystrophy Association of Canada was going to once again play a role in their life.
In 2003, Debra’s son Alex was diagnosed with Duchenne Muscular Dystrophy. Within two months of the diagnosis, Debra began volunteering with the Ottawa Chapter. “After Alex was diagnosed I knew two things: I needed information and I needed to do something to help the cause. Partially it was a way to network and get information, but I also knew I needed to get involved in finding a cure and in helping others. It had to mean more than just what was happening to our family.”
As she became more involved in the Chapter, Debra realized that there were leadership opportunities within the organization. “I was very interested in the Medical and Scientific Advisory Committee so I started there, and then I was approached to be Ontario Chapter Advisor, and then National Chapter Advisor. I am not sure I would have put myself forward to be nominated to the Board because I did not feel particularly qualified, but now that I am on the Board I really enjoy being involved in the process of ensuring we do the best job everyday of delivering on our mission and vision. I also feel privileged to work with my fellow board members – a group of amazing and dedicated people.”
As the National Chapter Advisor, Debra chairs the Chapter Advisory Committee and reports back to the Board. She is also a member of the Executive Committee, representing volunteers and chapters, and a member of the Medical and Scientific Advisory Committee. “In all these roles, I attend meetings and conferences and provide support to volunteers and support the success of the organization in any way possible. I also attend international and national conferences as a volunteer representative of Muscular Dystrophy Canada. In the past two years I have been involved in meetings with the advocacy activities and conferences with the Canadian Organization for Rare Disorders, a national meeting for paediatric endocrinology, a national meeting for neuromuscular researchers, and the Parent Project Muscular Dystrophy annual conference.”
What does Alex think of the family’s long-standing relationship with Muscular Dystrophy Canada?
“I think Alex finds it comforting that it has been a part of our family for a very long time. My father died when Alex was a year old which was 1 ½ years before Alex was diagnosed. I often say that if my father was still alive he would be one of Alex’s champions and an avid volunteer for MDC. I think Alex finds comfort in knowing he has the organization behind him and supporting him. As a younger child he was eager to participate in awareness and media events. Now that he is older, he is a bit shyer about appearing publically.”
“Alex’s twin sister Kate has become a great fundraiser and volunteer for MDC because of her brother. She heads up our family and friends team each year for the Walk for Muscular Dystrophy and proudly displays our top team plaque on the wall of her room. She loves to volunteer and really sees what a difference it can make in the lives of those with neuromuscular disorders. I think she also likes volunteering like Grandpa did.”