Just when Amanda and I were on the cusp of a new beginning, we were told that her life would soon come to an end.

It was the fall of 2001, a few months after we excitedly signed papers to buy a new house. But that house was far from our minds as we anxiously waited for the doctor in Sunnybrook Health Science’s ALS Clinic.

Amanda’s ALS diagnosis didn’t come as a surprise – the early signs had been there. But even when you suspect it’s true, hearing the confirmation isn’t any easier. We were both devastated. When the doctor handed us a folder with information, Amanda frantically leafed through the pages, desperate to know how much time she had left: three to five years was the average.

I wish I could say I stepped into a strong, supportive caregiving role right away. But the reality is, for three months, I felt utterly lost. I found myself in a situation I never imagined and was completely unprepared to handle.

I’m so grateful that the ALS Society of Canada (ALS Canada) was there to help us navigate that rocky beginning and many more challenging steps in the long, difficult journey that followed. One of their Community Leads visited us many times and connected us to vital at-home care and respite programs that became lifelines.

Before ALS Canada stepped in, I had no clue who to contact or what we needed. Their support was invaluable, so we jumped at the chance to give back through the ALS Canada Walk to End ALS. Our first Walk was in 2002, and we’ve participated with family and friends every year since.

Ultimately, the three to five years Amanda was expected to survive stretched into a much longer 22. She passed away in May 2023 at 66 years old.

Throughout those years, our “dream” house was filled with round-the-clock caregivers and special equipment making it possible for Amanda to move, sleep, eat, communicate, and eventually breathe. But through it all, Amanda maintained her fighting spirit and appreciation for life’s simpler joys. She loved seeing musicals, watching the spring flowers bloom in our yard, and hosting parties at our home. She also dedicated a lot of time to writing a detailed memoir about her ALS journey.

This summer we will be participating in the ALS Canada Walk to End ALS. Now more than ever, the ALS community needs our support to provide hope and help to families affected by ALS. That’s why we're joining thousands of others, a part of a passionate and motivated community to “walk” in celebration of hope and a world free of ALS. Please consider supporting our team and donating towards this important cause.

Your support will help to:

• Create a better day-to-day reality for people and families living with ALS by providing community-based support throughout Ontario – like home visits and support groups – as well as necessary medical equipment like hospital beds, wheelchairs, stairlifts and other items that increase safety in the home, at no cost to those who need them.
• Further scientific progress by investing in the ALS Canada Research Program, which funds promising ALS research. The ALS Canada Research Program is the only national dedicated source of funding for ALS research across Canada. This program provides peer-reviewed grants to researchers whose work has the greatest potential to advance the field of ALS. There’s been more progress made in ALS research in the last five years than over the last century – we need to keep building on this momentum.

Join our team in making a difference. Please consider donating to our team fundraising page as we work toward a world free of ALS.

Your support is needed now more than ever – we are stronger together!