Shaping MS research: meet Research Network member Chris Rafaluk

Fri 24 January 2025

Laura Ohlmeier

Our Research Network is a group of people affected by MS who help shape our research programme. Chris Rafaluk has been a Research Network member since 2019. We spoke to Chris about his motivations for joining the Network and why he believes diversity of thought is essential for shaping meaningful research.

Can you tell us a bit about yourself?

I work as an engineer in the automotive industry, which involves working on cars and electronics. In 2019, I was diagnosed with relapsing MS. My first symptoms were walking difficulties and lower limb spasticity.

I’ve always had a passion for understanding how things work, and it’s the same with my MS. I find it fascinating to try to understand what’s happening with the body when you’re living with MS.

What inspired you to get involved in the Research Network at the MS Society?

Unsurprisingly, I was curious about learning more about MS. I also believe it’s important that we don’t just do science for the sake of it. We need to ensure we ask the right questions to ensure the research has an impact and translates into real-world answers for people living with MS.

Being part of the Research Network gives me the opportunity to influence the kind of questions scientists ask. And it’s definitely improved my personal understanding of MS.

What do you do in your role as a Research Network member?

As a Research Network member, I help shape the MS Society’s research programme in many different ways. For example, I’m involved in reviewing funding applications from researchers and discussions about potential study designs.

I think this is particularly important for researchers who do lab-based projects. It can be difficult for them to put their research into context. As someone living with MS, I can ask the right questions and provide a different perspective. This way, we complement each other with our expertise.

Why do you think it’s so important to include people living with MS when shaping and designing research?

I think it’s essential to have diversity of thought in research. For example, I’ve chosen more aggressive treatments to manage my MS. However, that approach might not suit everyone. Some people prefer less aggressive treatments or worry about risks. So they might choose a very different path.

Having different perspectives at the table ensures we provoke new ideas, challenge existing ideas, listen carefully, and continuously improve. By making the voices of people with diverse lived experiences heard, we can add context and design research that’s really relevant and meaningful for people with MS.

What would you say to someone interested in getting involved in the Research Network?

If you’re considering joining the Research Network, I’d strongly encourage you to do so, even if you don't think you'd be very good at it. It’s important to recognise that your experiences are valid and valuable contributions to MS research. Saying what you don’t like about research is just as important as saying what you do like.

If we were just to leave the academics to it, they could end up doing something that doesn’t necessarily meet the needs of people with MS. By getting involved, you can help steer research in directions that you believe are most valuable.

Find out more about our Research Network