Jun 16, 2026

Turning Science into Sight: Marco’s Vision for Hope and Leadership

When Marco Fillion was diagnosed with retinitis pigmentosa at 13, he met the news with a response that would come to define his life: “It is what it is.” This wasn’t defeat, but a quiet determination. Even then, Marco understood that while vision loss would change how he moved through the world, it would not define who he was or what he could achieve. He defines himself as an eternal optimist. “You can either focus on the positive or the negative; the choice is clear to me,” he says.

As the newly-appointed Chair of the Fighting Blindness Canada’s Board of Directors, and the former National Leader, Actuarial Services, at PwC, he proved that vision loss does not have to limit potential. As his vision gradually declined, Marco developed innovative strategies — rapid eye scanning, heightened listening skills, and tactile awareness — that allowed him to thrive professionally. His disability helped him build resilience, confidence and an ability to not be afraid.

Living with what he calls an “invisible disability” also shaped Marco’s understanding of empathy and connection. “I get into situations where people see me differently than who I really am,” he says. A missed handshake, an awkward social moment, a confused look from a stranger — these experiences showed him how vision loss can create misconceptions about a person’s abilities and leave them feeling isolated or misunderstood

That is why Marco believes community and social connection are essential for people living with vision loss.
And connection was exactly what Marco found at FBC. He got involved and he gave back. He joined the FBC Inherited Retinal Disease Patient Registry, which gave him a sense of belonging. “I felt FBC had my back and was there for me,” he says. He joined the FBC board in 2024 and every year takes part in MOVE FOR SIGHT, FBC’s signature fundraising event.

Doing so helps him build awareness. Marco wants others to better understand not only the challenges of sight loss, but also the resilience, independence, and capabilities of those affected.

Six years ago, when Marco could no longer play soccer — his longtime passion and mental wellness outlet — he faced another turning point. Rather than focusing on what he had lost, he redirected his energy into advocacy and community leadership. He redirected his sports life to other activities he could still manage and focused on trying to make a difference in people’s life, whether they were going through similar or other life challenges.

Contributing to fundraising through MOVE FOR SIGHT is about hope and community. “There’s no cure right now, so understanding what kind of research there is and how it’s developing is where I get my hope.” He knows new discoveries with the ability to transform lives are within reach.

As the new Chair, he sees FBC as an organization that connects, empowers, and uplifts everyone affected by blinding eye disease. His journey is a reminder that leadership is not about perfect vision — it is about seeing possibilities where others see limitations, and helping to turn science into sight.