What’s your involvement with CF Canada (are you a volunteer, donor, event organizer, participant etc.)?
I am the current president of the Niagara Chapter. For the past two years I have also been the Coordinator of the Walk to Make Cystic Fibrosis History.
I’ve been involved with CF Canada for three years. As for my wife Colleen, she has been involved on and off for 22 years starting with the Peel Chapter where she participated in numerous events led by Dolores Adams.
What is your connection to CF?
Colleen and I married in 2004 and she came into the marriage with her four children. Two of the children had cystic fibrosis. So, I have seen first-hand what the daily struggles are for cystic fibrosis patients. Rob was particularly sick and we spent a lot of time with him during his hospitalizations at St. Michael’s hospital in Toronto. Eventually, Rob was placed on the Lung Transplant list. When he got the call for his transplant, Colleen was at work so I picked up Rob and we drove to the Toronto General Hospital to meet Colleen and the transplant team. It was an incredible time to share with Rob as he got a new lease on life. Sadly, after five years of a healthier life, the harsh reality of being a CF and transplant patient took over and Rob needed a second transplant. Unfortunately, he was not able to receive the second transplant. Rob passed away at the age of 31. This is cystic fibrosis at its worst. Thankfully, my step-daughter Karen is 31 and her CF is under control. Karen is able to hold down a full time job, is married and is a great example of hope for others that have this terrible disease. I would also like to mention that the hard work of the CF community to have new born testing for cystic fibrosis is a major improvement and will mean that other families will not have to wait up to 16 years to be properly diagnosed like Rob did.
What’s your favourite part about being a volunteer?
Meeting and supporting other families dealing with CF. We also enjoy working with a very dedicated group of volunteers that have been working here in Niagara, some for over 40 years to help find a cure. Over the years they have been involved with dances, raffles, parades, collecting money, hosting bingos and other specialty events all to raise awareness and get funding to help find a cure.
We have also met a number of families that have put on special events in memory of their loved ones taken away far too soon. There was Emily Allan’s 900 km End to End CF run along the Bruce trail with Dan Dakin in Memory of Sarah Elizabeth Bloomfield, the Pay it Forward for CF Comedy show in honour of Mackenzie Merritt organized by Scott Merritt, Patty Vollick and Tammy Locke, and the evening of live music to remember Meaghan Elaine Collins presented by friends Jon Marleau and Maddy James, with her parents Karen Martin and Michael Collins.
Another great event that we have enjoyed being part of is the Friday the 13th event in Port Dover. Here KIN Canada organizes parking and buses the patrons over to Port Dover to enjoy the plethora of motorcycles. The parking proceeds are donated to CF Canada. Being able to help KIN is an honour given their dedication to helping our cause in so many ways to find a cure for cystic fibrosis.
Finally, we have benefitted from the hands on involvement and support from CF Canada in the form of Johanna Cotte and Shannon Ketelaars. Their assistance has helped to make our efforts run smooth.
What has been the greatest highlight of supporting CF Canada for you?
Being with lifetime Niagara Chapter volunteer Nancy Clayton, her husband Bob, her sister Rosemary Croteau and husband Paul Croteau, as Nancy received recognition for 40+ years of volunteering with Niagara’s CF Chapter at the Ontario Volunteer Services Award in May 2017 was quite memorable. Rosemary and Paul Croteau have been helping Nancy for these 40+ years as well. Nancy Clayton has organized Dollar Days on Clifton Hill for 31 years. She does most of the work for Dollar Days but has had a lot of help over the years from family and friends. Joanne Dubas has been volunteering and taking care of the books for our local chapter for about 30 years as well. Joanne’s husband Jim, and family help out at our events as well. Finally, we have Jeannie and Leno Mazzuocco who have also been involved for over 20 years and have been very supportive of our events and activities, lending valuable time whenever needed. It is wonderful having Nancy, Rosemary, Joanne, Jeannie, their husbands, other family members as part of our chapter. They continue to this day helping to fundraise to find a cure for CF.
It has also been very exciting to watch our Walk grow over the past 2 years and we look forward to this coming May to have an even better Walk. Our teams are growing with support for their loved ones that are affected by CF.
What will #aworldwithoutCF mean to you?
It would mean that my step daughter Karen will not have to endure the torture that her brother Rob went through, just to breathe. The quality of life would improve for all people living with CF, and it will be a non-issue for future generations.
Do you know a deserving Cystic Fibrosis Canada volunteer or group who should be recognized for their efforts? Learn more about our National and Regional Volunteer Awards, or to nominate someone today!Learn more