Champions of Impact: Inside our Community Representative Program

Our Community Representative program was launched in 2012 with the goal of involving people affected by MS in our research review process. Through this program, we hope to give people affected by MS a voice to share their opinions on MS research priorities and ensure that fundraised dollars are spent on impactful research. 

"I thoroughly enjoyed the whole process! It was heartwarming to know that there are so many talented young people rooting for those of us in the MS Community through the choice of their life's work. All in all, it was a real part to whole picture experience, and one I would do again in a heartbeat!  Thank you for the opportunity to participate." ​ 

- Sue Whittacker, 2022 Community Representative 

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What do Community Representatives do?

Community Representatives review the non-technical sections of applications that are submitted to our research funding programs, like the Annual Research Competition, and present their assessments at the review meeting alongside a panel of scientific experts. They share perspectives on the relevance of the research to people affected by MS based on their lived experience or interactions with the MS community.  They ensure that the research has potential to translate into meaningful impacts that will ultimately improve the lives of people with MS. Most importantly, Community representatives provide important feedback to researchers to help them better communicate their work to the public in a way that is clear and understandable. 

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“I loved participating in lively discussions that lay the groundwork for developments in MS management. It was great to see the level of engagement the researchers bring to the table.”

- Geoff Robinson, 2023 Community Representative

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Our Program in Action: See the Impact! 

Since its launch, we’ve had over 65 Community Representatives across Canada – a talented pool of individuals of diverse backgrounds and experiences (Figure 1). A majority of our Community Representatives are living with MS (89%), but many also identify as a MS care partner (6%) or having a close relationship with someone with MS (5%).

Many Community Representatives are deeply involved in MS Canada’s volunteer programs and have taken on leadership roles as MS Ambassadors, Council Members and are Peer Support Group leads. A number of Community Representatives have also been invited to take part in other research opportunities like serving on patient advisory committees and providing input in research design. 

Below are some examples of how we’ve kept our Community Representatives engaged!

Heather Blumenthal, 2018 Community Representative

Heather served as a Community Representative since 2018. With a strong background in writing and editing research communications, Heather is regularly engaged to review our research surveys, Community Representative review guidelines, and various resource documents for researchers.

Beverley MacAdam, 2019 Community Representative

Beverley has been an avid volunteer with us, participating on the organizing committee for the Toronto Women Against MS Gala Luncheon and a Community Representative since 2018. Her experience  with reviewing MS research made her the perfect fit to serve as a community member on MS Canada’s Medical Advisory Committee, where she can draw on personal experiences to share perspectives on our research programs and key research priorities . 

Jean-Sylvain Oullette, 2020 Community Representative

Jean-Sylvain Oullette has also been a dedicated volunteer and served as a Community Representative at our research review meetings for many years. In 2019, he was invited to become a member of our national Board of Directors and our Board’s governance committee at MS Canada.

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What do Community Representatives think about the program?

Each year we ask our volunteers what they enjoy the most about being a Community Representative. There’s always excitement about the opportunity to contribute to the research review process and the value of feeling heard and making an impact. They enjoy connecting with scientific experts in the field of MS and learning about upcoming research. We also take pride in learning that they walk away with a sense of hope for advancements in MS treatments and care. See Figure 2 for a word cloud representation of our volunteers’ perspectives of the Community Representative program.

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"I’m impressed by all the research done for MS, and I’m happy to see that the review process is well managed and the money that we collect through our fundraising activities is well spent. I am proud to participate in this annual review process." ​

-Jocelyne Arcand, 2024 Community Representative 

We truly appreciate the amazing efforts of all our past and present Community Representatives. They’re essential in ensuring that the research we fund will make a positive impact on the MS Community.

Interested in becoming a Community Representative at MS Canada, or know someone who may be? Check out our Community Representative page for more information today!