National Volunteer Week: Jacqui Devine

They always say ALS is rare, so it’s surprising how many times you hear about people who have been diagnosed with the disease. In 2012, I was working as a personal support worker and my favourite client was living with ALS. Since I knew very little about it, I decided to do some extensive online research. I had no idea that seven months later, my dad would begin showing early signs of ALS himself. Doctors took months trying to sort out what was wrong. They tested for everything from strep throat to acid reflux, throat cancer, and brain cancer. At one point, they even ruled out ALS. Every time we received “good” news that something serious was off the list of possible explanations, we felt as though we had dodged a bullet. All that waiting was tough on everyone, but when my dad finally received his ALS diagnosis in July 2013, I knew I wanted to become more involved with other passionate people working to improve the lives of Canadians with ALS.

I began to volunteer with ALS Canada because I wanted to help improve others’ knowledge about a disease I felt was under the radar and misunderstood. I also wanted to meet people, like myself, whose families were struggling to come to terms with the difficult reality of living with the disease or caring for someone with ALS. I thought we were the only family who had to wait so long not knowing what was wrong with dad, but sharing stories with others I met through ALS Canada helped me realize we were not alone. Through my volunteering, I found people who supported me and who understood what I was going through.

What began as a small amount of involvement helping at a charity bingo developed into a regular stint volunteering at fundraising events like the WALK for ALS in London and Durham Region, the Hike for ALS, and the ALS Golf Classic. I was willing to do whatever I could to help out, and over time, the events became an important part of my life I shared with my boyfriend, who also has ALS in his family, and who shares my passion for volunteering.

My all-time favourite event is the Bombardier Plan Pull. I’ve helped out at the event three years running and will be there again this year to register team participants, time the event, and generally pump everyone up for a massive show of brute strength and determination. The amount of money we raise is substantial, but perhaps what inspires me most is the joy, the smiles, and the laughter on everyone’s faces. I remember feeling so emotional the first time I attended. I was sobbing in the car on the way there, but I didn’t want to show up crying. The incredible positivity that greeted me as soon as I arrived gave me tremendous hope, and a feeling of being among family.

I’ve never felt the kind of inclusion and passion I experience when I volunteer at ALS Canada events. I’ve met so many wonderful families, people I see year after year. Today, I donate my time because I don’t want others to go through what my dad did. I want more people to know about ALS because it can happen to any of us. So, as long as ALS is around, I will be there to do whatever I can. I’ve even come up with my own idea of selling awareness bracelets at the events I’ve attended, and as long as I can, I will keep pushing myself to do more. It’s a great feeling to know you are making a real difference.

Each day during National Volunteer Week, we are posting the story of a different ALS Canada volunteer here on our blog. Each person profiled has different reasons for volunteering, skills they bring to the table, and tasks they are responsible for, but – like all our volunteers — what they share in common is a passion for helping to make ALS a treatable, not terminal disease.

Posted in: Stories, Volunteers