Community In Action: Meet the Volunteers Behind Community Hubs

Meet Candice 

“I was 22 years old when I was diagnosed with MS. I had just graduated from university and started my career. I remember sitting in the room at the MS clinic, hearing the words, ‘You have MS.’ At the time, I didn’t fully understand what my diagnosis would mean for my future.  

What stayed with me the most wasn’t the diagnosis itself, it was when the doctor told me I’d likely need a wheelchair within the next 10 years. While I’m extremely grateful that wasn’t the case, I still live with chronic pain and fatigue. Some days, it’s a struggle just to get out of bed in the morning.  I have to plan my days around how I’m feeling and conserve my energy when I need to. I don’t always know if I’ll have the energy to do regular household tasks, let alone attend events or get together with friends. 

I’m medically retired now, which is something I never would have expected to happen in my thirties. MS has taught me to take things one day at a time because you never know what the next day will bring. 

I started volunteering for the MS community as a way to get involved and support others on a similar journey. As my MS progressed, I decided to make volunteering my life’s calling. It’s become my way of pushing back against misconceptions to show you can live a full and meaningful life with MS. Through volunteering, I can set a positive example, inspire others, help build an inclusive community, and make sure nobody living with MS feels alone. 

I’ve taken on many volunteer roles within the MS community including serving as an MS Ambassador, facilitating support groups, and more recently, an Atlantic Community Hub Lead. I became more involved in advocacy efforts last year, and it made me want to do more to help create change. I noticed the need for an advocacy-focused volunteer group in Nova Scotia and that’s how our Community Hub was formed. Our Community Hub might be small, but it’s mighty! Myself, Donalda Martin-Gagnon, and Theresa Denham focus on raising awareness, improving accessibility, and advocating for change.

Our Community Hub recently spoke to local massage therapy students about what it’s like to live with MS and how massage therapists are an important part of our healthcare team. We even brought in items to show students firsthand the wide range of symptoms that can affect people living with MS. It was a meaningful moment to show how we advocate for ourselves and how health care providers can advocate for us as well.

What makes our Community Hub so powerful is that we each bring our own unique experiences living with MS. When we come together, we’re able to show the full scope of the disease and its symptoms—both visible and invisible. Sharing our stories and challenges allows us to support and learn from each other.  

Volunteering has shown me what’s possible when we come together for a common goal. I’m able to use my personal and volunteer experiences to create real change and awareness for MS within my community. 

If you’re considering volunteering, choose something that matters to you. Your voice, experience, and skills have a place in the community. Together, we can build a future where people living with MS not only survive, but thrive.” 

Meet Lindsay

“After a year-long journey, I was diagnosed with MS in 2004. In the beginning, I didn’t share my diagnosis with many people. I was determined not to let MS define what I could and couldn’t do. I tried to ignore, minimize, or even make light of my physical symptoms, choosing to deal with everything privately. But after becoming a mother, something shifted. I knew I would need to explain MS to my daughters one day, and that pushed me to begin talking more openly about my diagnosis and participate in MS Walk.

After connecting with another parent in my network who also lived with MS, I realized the impact of making connections within the MS community. This led me to volunteer for MS Walk, join peer support groups, become an MS Ambassador, and eventually take on the role of Community Hub Lead in Winnipeg. I was excited by the idea of engaging more with my local MS community and the Community Hub seemed like the perfect way to amplify the voices of people living with MS to the broader community.

Our Community Hub is made up of a diverse group of volunteers with a wide variety of lived experiences. Some of our members were diagnosed at a young age, others later in life, but we all share a common understanding of what it’s like to live with MS. Many of us are involved in different areas of volunteering—peer support, newly diagnosed support, and community events. Every time we meet, I learn something new, and together we use the strength of our collective voice to deepen our impact on the community. 

Recently, our Community Hub hosted a presentation on aging with MS and the different needs we have at different life stages. We explored ways to provide resources and treatment to people based on where they’re at in their MS journey and identified our local MS clinic as a great place to get in front of the community. Our conversation turned into action with a volunteer-led booth at the clinic. We were able to connect with patients and staff, and it ended up being really successful. We’re now looking at how we can do something similar on a quarterly or monthly basis and maybe even expand it to events like MS Walk.

When I was younger, I wish I’d known there were others in the MS community that understood what I was going through, instead of feeling like I had to take everything on myself. It took me years to finally accept MS as part of my identity, and once I started talking about it openly, I was surprised by how empowered I felt. I don’t know if I would have been ready to join a volunteer group when I was first diagnosed, but looking back, I would have benefitted early on from connecting with other women on the same journey of navigating motherhood, careers, and life with MS.

Living with MS can feel incredibly isolating, especially if you aren’t living openly with it. The best way I’ve found to help navigate the uncertainties of MS is to talk with other people who understand what I’m going through. I still think about it every day, but I no longer live in fear of the unknown and I’m able to engage with it in a positive way. I encourage anyone looking to get involved to find an area that interests you and sign up for a volunteer shift. It’s a great way to connect with the community, learn more about MS, and make a real difference.”

Interested in learning about a Community Hub near you or curious about starting one of your own? Contact community@mscanada.ca for information.