The Role of Lived Experience in ALS Research

When I started as AARN project manager in May 2025, I knew that bringing researchers together with members of the lived-experience community would be one of the most important parts of my job.  

In September, we held our first-ever AARN Annual Meeting, and one-third of the people in the room were those with lived experience. That tells me that the Alberta ALS community is just as passionate about research as I am. 

From start to finish, the meeting was full of engagement from all facets of the ALS space.  

We opened with a keynote from Dr. V. Wee Yong, who founded the Alberta MS Network and offered practical advice on how to grow and maintain a research network. We had lightning science talks from seven recipients of AARN Research Trainee Awards, and we divided into small groups for a rich and productive brainstorming session. 

One significant takeaway for me in listening to Dr. Yong was how deeply fortunate AARN is to have the financial backing and support from the ALS Society of Alberta.  

After the meeting, as I chatted with members of the research and lived-experience communities, one person stood off to the side and waited for me to finish a conversation. 

She told me that she cares for her mother, who is living with ALS, and she wondered if she could ask me a skeptical question. I said of course (and, to be honest, those are my favourite kind). 

Why does it matter, she said, for people with ALS and those who care for them and love them to be in meetings like this? What is the benefit? 

What I told her is what I have learned since entering the ALS advocacy space when my late husband, Chris, was diagnosed in 2019. The lived experience community’s presence at research meetings and in research spaces is twofold. It benefits the lived experience community, and it benefits the research community. 

Too many times in the years since I have been an ALS advocate, I have had a researcher tell me that before I started sharing my family’s ALS journey, they had never met someone with the disease. Sometimes these researchers had not made a personal connection with the disease they were studying after a decade or more working on ALS.  

There are innumerable problems that we cannot yet solve in the ALS world. This, however, is a supremely solvable one.  

I have heard from established researchers that when they were young, they didn’t necessarily know where they wanted to focus their work. Often, they went where the funding was (this is exactly why AARN has a heavy focus on funding research trainees). Then, once they started working on ALS, and they met people living with the disease, they were motivated and inspired to make ALS research the focus of their entire career.  

It’s human nature to care more deeply, to be more invested, in a cause you feel personally connected to – it’s why so many people turn out for our Side by Side for ALS walks across the province – and that is no different for researchers.  

When a researcher is in a room, at a table, in a brainstorming session, with someone who has lived experience with the disease they are studying, they also become more invested.  

Working in a lab on mice or zebrafish or with cells in a petri dish can make what a researcher is studying feel abstract, far away. Sitting down and speaking to a person impacted by ALS is close-up, personal and can be deeply impactful and inform what researchers work on in the future.  

The reciprocal benefit, from my own lived-experience perspective, is that engaging with the research community can feel empowering for those living with and impacted by ALS.  

Participating in research – whether through a trial or in a meeting like the one we had last month – is an action in an otherwise inactionable disease. For my family and so many others I have met in the ALS space, understanding the research landscape and being active in it can provide a sense of agency and that, in turn, offers purpose and hope – two feelings that can be hard to come by when you or someone you love is living with ALS. 

What I saw last month at our meeting was a hunger for information and collaboration from all corners of the ALS community in Alberta, from those treating people with the disease, to those living with and caring for people with the disease, to those in labs studying the disease. 

What I saw was clear and obvious – we are stronger and better together. 

Kelsie Snow, AARN Project Manager