Caregiver Rebecca Trafford Walks in Ottawa’s Walk to End ALS to Support Families and Advance ALS Research

As ALS Awareness Month begins, communities across Ontario are preparing to take part in the 2026 ALS Canada Walk to End ALS, the province’s largest annual fundraising initiative supporting ALS research, advocacy, information, and community‑based services. Among the many participants  taking part this year is Ottawa caregiver and advocate Rebecca Trafford, who will participate in the local Walk on Saturday, June 6, at the Tony Graham Recreation Complex & Walter Baker Park in Stittsville.

Rebecca’s connection to the ALS community began in 2023, when her mother, Heather, was diagnosed with ALS. The news was devastating, not only because of the seriousness of the disease, but also because of how quickly it can progress. Like many families, they were suddenly navigating a complex and emotional reality with little time to prepare. With support from an ALS Canada Community Lead, who helped them navigate the healthcare system, along with access to the ALS Canada Equipment Program and support groups, they found guidance, practical help, and a network that made them feel less alone.

The Walk to End ALS takes place in 22 communities across Ontario throughout June, with a virtual option available for people who cannot attend in person. The event contributes to ALS Canada’s province‑wide fundraising goal of $2.1 million, helping to meet the needs of nearly 4,000 Canadians currently living with ALS, and their family, who can rely on the organization for trusted information and resources as the disease progresses. Each year, approximately 1,000 Canadians are diagnosed with the disease, and another 1,000 lose their lives to it. The cost of living with ALS can exceed $250,000, placing significant strain on families and caregivers who must adapt quickly to changing needs.

For Rebecca, the Walk is both personal and purposeful. She has experienced firsthand the emotional and practical challenges of supporting a loved one living with ALS. She speaks openly about the daily realities caregivers face, from managing equipment and appointments to coping with the emotional weight of watching someone they love lose abilities they once took for granted. She also emphasizes the importance of community support programs, which provide essential resources that help families maintain stability and dignity during an unpredictable journey.

When asked what participating in this year’s walk represents for her family, Rebecca shared how deeply the event has become woven into their lives. “For us, the Walk to End ALS has become a way to come together as a family. My mom was diagnosed in 2023, and we’ve done the walk every year since — 2024, 2025, and now this will be our third. She’s the one living with ALS, but the impact reaches all of us. We’ve also lost a neighbour and a friend to ALS, so showing up really matters. Last year it was pouring rain, and still everyone came out. Seeing that kind of support meant so much to us.”

Rebecca also highlighted how her family has expanded their fundraising efforts beyond the walk. “We held our inaugural charity golf tournament last year with support from ALS Canada, and we raised $16,000. It was such a success that it’s now become an annual event. It showed us how powerful the community can be when people come together for this cause.”

The Walk is also a moment to highlight the broader impact of ALS Canada’s work. In 2025, the organization invested more than $2.8 million in ALS research, supporting peer‑reviewed grants, strengthening clinical capacity, and advancing emerging areas of scientific discovery. This builds on the Ontario government’s $13 million commitment over three years to support the Ontario Provincial ALS Program, which helps ensure access to multidisciplinary clinic care, essential community services, assistive devices, and mobility equipment.

Ilayda Ulgenalp,  Director of Advocacy and Stakeholder Relations at ALS Canada, brings a province‑wide perspective to the challenges facing families affected by ALS. She notes that the needs of families and caregivers are evolving quickly, and that research remains one of the most significant gaps in the system. “ALS Canada provides community‑based support, equipment, and advocacy in Ontario and at the federal level, and we also invest in ALS research. What we’re seeing now is that research remains one of the most significant gaps. We need a stronger national ecosystem that can target research toward the most promising initiatives. That’s the goal of a national ALS strategy — to unify, scale, and coordinate this work through efforts like the Canadian Collaboration to Cure ALS.”

Ulgenalp also emphasizes the importance of public understanding and community engagement, especially during events like the Walk to End ALS. “We want people to understand the full impact of ALS — not only on the person living with the disease, but on their friends, families, and entire community. The Walk to End ALS is the largest community‑driven fundraiser we have, and it brings people together in a powerful way. It shows that we’re part of something bigger, that we’re building community, and that there is real hope for a world free of ALS.”

The sense of community that emerges during the walk is often one of the most meaningful aspects for participants. It brings together family, friends, and supporters in a shared show of care and solidarity at a time when many people feel their world shrinking.

For Rebecca, taking part is about what comes next. She hopes her participation will raise awareness, encourage compassion, and inspire others to learn more about ALS and the families it affects. She also wants people to understand the importance of continued fundraising. Community support helps sustain programs that respond to the evolving needs of people living with ALS, while research funding brings the scientific community closer to breakthroughs that could change the future of the disease.

As Ottawa prepares for the June 6 event, Rebecca’s story reflects the strength of caregiving and the impact of coming together. The ALS Canada Walk to End ALS is not only a fundraiser, but a shared effort by families, advocates, and supporters to move toward a world free of ALS.

Photos: Courtesy ALS SLA Canada