National Volunteer Week: Tara Wingrave

With two 18 year-old daughters, a 19 year-old son, and a highly demanding job, life is hectic, but that won’s stop me from making the time to organize the Barrie WALK for ALS again this year. It’s something I feel passionate about, and it’s one of the most important ways I am fulfilling my promise to my mom to bring greater awareness so that we can make ALS a treatable disease in the near future. Knowing there is hope on the horizon keeps me inspired.

Looking back, there are too many precious memories to count, but one I’ll never forget is the moment my mom cut the ribbon to mark the official start of the 2014 WALK for ALS. It was our second WALK, and the last one we did together. The day was bitterly cold. My mom was bundled up in her blue Gortex jacket and a warm blanket to cover her legs. Her bright blue eyes were smiling from behind the mobile BiPAP she wore to help her breathe. A purple children’s windmill taped to the back of her wheelchair spun around as we walked. She was the image of courage and determination.

When I first sought out volunteer work with ALS Canada, it was a kind of coping therapy for me. Like many others supporting a family member living with the disease, I felt overwhelmed by a feeling of complete helplessness. I lived four hours away from my parents so I knew I couldn’t be there every day to help out. The WALK Coordinator role was something I could do that was constructive. It wasn’t until much later that the need to make a real difference became the driving force behind my volunteering efforts. In the beginning, the members of our small WALK Committee became a support group for each other, and over time, these same people became like family. Even now, two years after my mom passed away, I am still in regular contact with one of the original members of the committee who lost her dad to ALS. We continue to support each other by checking in every couple of weeks to see how the other one is doing.

So much effort goes into planning an event like the WALK for ALS. Perhaps one of most challenging jobs is to recruit and train enough volunteers to make sure the day of the event goes without a hitch, but there’s also the work of securing corporate donations, gifts-in-kind, signage, media exposure to attract participants, and organizing entertainment. It takes the commitment and sustained energy of a team of dedicated volunteers. Last year, it paid off in a big way. We raised a record $100,000 in Barrie, surpassing our goal by $20,000! There’s no doubt the Ice Bucket Challenge made an enormous difference in terms of general awareness. Suddenly people were scratching their heads and saying, “Oh yes, I think I’ve heard of this.” It’s been more difficult to attract media attention since 2014, but that’s all the more the reason we have to work even harder to keep up the momentum.

Mom could be stubborn and impatient. She would often say, “Enough talking. Let’s get this show on the road.” At the 2015 WALK for ALS, the community, led by ALS Canada Regional Manager Sarah McGuire, surprised me in a gesture of kindness and solidarity I will always cherish. There were the usual speeches from dignitaries I had organized, and a short talk I gave to share my story, but instead of the usual countdown, Sarah prompted the entire crowd of 400 people to yell out in unison, “3, 2 …Enough talking. Let’s get this show on the road!”

If I had more time to reach out to talk about the importance of volunteering, I think I’d try to touch young people. I was lucky. Volunteering was always something modelled by my mother. In high schools today, students are obligated to complete a mandatory number of volunteer hours. The intent is honorable, but wouldn’t it be wonderful if high school volunteer hours really mattered, really brought something meaningful to the students? I think there’s a lot we could do in this area. A while back, an enterprising grade 8 student whose friend’s grandfather had ALS contacted ALS Canada for help to prepare a class presentation. As an ALS Canada Ambassador, I was asked to give a presentation to the class. There was learning on many levels for everyone involved. And in the end, this student won a school competition for her project that allowed her to direct the funds from the annual school fundraiser to her charity of choice. It was wonderful to see young students developing a philanthropic sensibility, and personally satisfying to know the money raised had gone to such a worthy cause!

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