A Story That Lives On
January 21, 2026
Note from Allison Wills, editor of The 20Sense Report: One of the most meaningful aspects of my job is speaking with and reporting on patients. All their stories stay with me and strengthen my resolve to help amplify their voices and share their experiences with the Canadian pharmaceutical ecosystem. One of these voices, Adam Wellburn-Ross, was also a close personal friend. His life continues to affect me profoundly, and I am proud to pay a short tribute to him here.
It’s especially jarring to talk about Adam Welburn-Ross in the past tense, as his life ended far too early. Before Adam left us in 2024, he shared this quote from Rumi: “Goodbyes are only for those who love with their eyes. Because when you love with your heart and soul there is no such thing as separation.”
As we wrote back in 2019, Adam was a super-patient: taking an innovative amyotrophic lateral sclerosis (ALS) treatment backed by a patient support program, participating in clinical trials, sharing his health data with a registry for research and, in the days before Covid hit, making a trip to Ottawa to support ALS advocacy work.
When we interviewed Adam for the story, his words were a masterclass in living fully and gracefully amid enormous obstacles. In keeping with his earlier days as a hockey coach, which earned him the nickname “coach sunshine,” he refused to live like a “sick person,” choosing instead to joke around with his doctors and pour daily love into his partner and primary caregiver, Danielle, as well as his two young-adult children. No matter how the illness progressed, he never lost his passion for patient care and for personal support worker rights, communicating his sense of urgency in discussion and letters to government officials.
At 20Sense, Adam’s story echoes frequently in our thoughts. We have no doubt he will continue to touch people through his wise words and inspirational life. Read the full 2019 article here.