Jonathan Pratt

_“My why begins with my granddad. When I was a child, he was not a big part of my life. I think I was four years old the first time I ever met him. My granddad, he’d had a hard life, he’d made a lot of mistakes, and he carried a lot of regrets. He’d abandoned my grandmother and their four children when my mom was very young, so it always felt a bit weird and difficult when he was around.

By the time I was in high school, though, I began to understand that his regret and his love were closely connected. He was always concerned that I wasn’t getting into trouble. When my granddad would tell me stories of all the things he’d done wrong and all the things that had gone wrong in his life, I realized he was using his own experience as a cautionary tale for me. During my teenager years, I was confronted to some situations where his stories were very helpful. My granddad became a great source of guidance at the time when I needed it most.

“A week before my granddad died, I made a promise to him that I would go into cancer research. He suffered a lot near the end, and I wanted to find a way to prevent others from suffering in the same way.”

He’d been a heavy smoker all his life, so it wasn’t a huge surprise when he was diagnosed with lung cancer. The cancer metastasized, he was hospitalized, and then in 2008 he passed away. A week before my granddad died, I made a promise to him that I would go into cancer research. He suffered a lot near the end, and I wanted to find a way to prevent others from suffering in the same way. I did my undergrad in biochemistry and then a PhD and postdoc focused on rare cancers. Eventually, working on these research teams, I recognized that I had a talent for project management and so I went back to school and completed an MBA as well.

Shortly after I finished my MBA, I was approached by Gail Ouellette, founder of the Quebec Coalition of Orphan Diseases (RQMO, Regroupement Québécois des Maladies Orphelines). They were looking for a new executive director. At first, I wasn’t sure. Despite my research into rare cancers, I knew very little about the rare and orphan disease communities. It was a completely new world for me. But I took the plunge.

When I started with the RQMO in 2022, the first meeting I took was a coffee session with members of the community. There were several parents who have children affected by biliary atresia, a disease which affects about 300 babies in Quebec each year. I remember being so affected by the story of grief these parents shared. And then I realized that for some parents, their baby will unfortunately and heartbreakingly pass away pretty soon. And yet there they were, at this coffee meeting, because that was how important the community was to them.

The emotions I felt then were like a hammer to the face. I had a two year old son at home and my wife was pregnant with our second child. That was the moment I realized I had a new mission in life. A new why. I committed myself to being the most passionate leader I could possibly be, not only for this community, but for the entire rare disease community. I vowed to take the stories of every one of these families onto my shoulders and tell the whole world until everyone understood how urgently this community needs help, needs hope, needs change.

The why of what I do today is all about these families and individuals whose experience with rare disease is so overwhelming, so hard, and so complex. I want to make sure they never have to face it alone. I believe my granddad would see this as a continuation of the promise I made him all those years ago.”

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