National Volunteer Week: Carol Skinner

When I received my ALS diagnosis in 2013, I was given two to three years to live. I was 41 years old. I had settled into a rewarding career – art therapy – and I was happily married to the man I love. Learning I had ALS and that “there was nothing the doctors could do to help” was devastating. I spent days filled with shock, depression, and a feeling of helplessness. My physical condition was deteriorating rapidly, so my husband, Travis, and I had to move out of our condo to an apartment that was more accessible. That was hard because it meant facing the reality of what lay ahead. But perhaps the most difficult adjustment was having to leave my job. I felt like a core part of me was ripped out of my life. Something was really missing.

Volunteering for ALS Canada has given me back hope and purpose. I have received so much positive feedback from people, and really, I feel as though all I do is show up. I’m the one getting back more than I’m giving! I’ve already beaten the odds, so while I can still speak and I still have enough energy, I just want to keep doing everything I can to help the cause. I am truly grateful for the advocacy work I do as an ALS Canada volunteer because I know that sharing my story will help build awareness, which will lead to more people becoming involved and more funding available to bring us closer to a cure.

When I first signed on as an ALS Canada volunteer, I had no idea where it would all lead. Gathering my team “Living Loving Laughing Walkers” for the Ottawa WALK for ALS in 2014 was really what got me started. The response from people was overwhelming. We exceeded our fundraising goal, and I was comforted by the flood of support around me. I was too sick to participate in 2016, but since my team has been part of the WALK we have raised more than $17,000 for ALS research and vital, practical services like the bath chair that was provided for my apartment recently so I can sit in the shower — I can no longer manage without it.

I remember seeing the Ice Bucket Challenge in 2014 and feeling for the first time that the world had my back. In the summer of 2015, I knew we had to keep the momentum alive so I set up my own Ice Bucket Challenge online. Friends and family in Ottawa helped organize other fundraising events too, including an annual bonspiel, Curling for Carol, that we’ve held for four years in a row now.

The events have been uplifting and inspiring, but perhaps the place I feel I’ve really made a difference is in my role as an ALS Canada Ambassador. Speaking at the University of Ottawa about the impact of receiving an ALS diagnosis, delivering a speech attended by more than 300 Canadian and international ALS researchers at the annual ALS Canada Research Forum last year, and participating in the first meeting of the all-party ALS Caucus on Parliament Hill in Ottawa are positive steps that help raise awareness and capture the attention of key stakeholders. All of this just serves to remind me that I don’t just have to sit back and watch this happen to me – I can do something. It’s very empowering!

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