From personal loss to purpose: How my father’s ALS diagnosis shaped my journey
Hi everyone, my name is Charlotte Manser — though most people call me Charlie. And if you’re part of the ALS community, then I consider you a friend. My connection to this community began when I was 16, the same year my dad was diagnosed with ALS. He passed away a year later, in 2013. Now, in 2025, I’m on the verge of completing my PhD in Cellular and Molecular Medicine, focusing on cholinergic signaling, a specific type of brain signal that uses chemicals called acetylcholine and nicotine, in ALS. These chemicals bind to receptors in the cell called nicotinic receptors, triggering a process that can send a message along between cells. It’s a huge milestone — one I never saw coming. Looking back, two major events set me on this path: my dad’s ALS diagnosis and my own diagnosis of ADHD. Strangely, they happened around the same time, and both reshaped my life in ways I’m still unpacking.
My dad was a proud member of the Canadian Armed Forces. He was strong, steadfast, and to me, larger than life. I was a daddy’s girl — no question — and for much of my childhood, we were thick as thieves. But his career often took him away from home. He volunteered for deployments to avoid frequent postings, spending long stretches — six to eight months at a time — overseas. These separations, though filled with deep moments of connection when he was home, slowly chipped away at our relationship. Each deployment seemed to take a little more from him. By the time I hit my teen years, something had shifted. He became more rigid, quick to anger, and increasingly distant. We clashed more than we connected. I didn’t understand it then, but I now realize those changes were likely early signs of ALS (with maybe a dash of post-traumatic stress disorder).
Despite my connection to him and later, to ALS, science wasn’t my first passion. In fact, I struggled with it. I wasn’t the kid dreaming of lab coats or space travel. I found math, science — even basic memorization — nearly impossible. I could sit quietly in class, but when it came to applying what I’d learned, it felt like my brain hit a wall. My grades were average despite all the extra work I put in. It wasn’t until my final year of high school that things clicked — ironically, during one of the most emotionally chaotic times of my life. My dad had been diagnosed with ALS the year before, and my academic performance was collapsing. But the real reason became clear: I had ADHD. With a diagnosis, support plan, and the right tools, I finally had the ability to learn in a way that made sense for me.
It’s been 12 years, two (almost three) science degrees and I still half-expect him to walk through the door with his duffle bag, as if no time has passed at all. My dad wasn’t perfect, but he was and still is, my hero. I miss him every day. Many graduate students are frequently asked how they maintain motivation and focus for so many years. For me, it’s easy when you can relate to the very people you’re trying to help. Many days, there’s a lot that doesn’t work in the lab, but science is a process of refinement. It takes a careful cocktail of patience, dedication, and a pinch of luck (or ritual sacrifice) to succeed. My work might not necessarily lead to the cure for ALS, but I hope that maybe, some part of something I’ve done will inspire something (or someone) that will.