Meeting Yves Savoie

The MS Society’s New CEO Steps Up to the Plate Raymond Cohen, president of the Canadian Abilities Foundation and publisher/editor-in-chief of Abilities, met with Yves Savoie, recently appointed president and chief executive of the Multiple Sclerosis Society of Canada and president of the Ontario Division, to talk about the organization and its philosophy of engagement.

RAYMOND COHEN: When you and I first met at Toronto’s Super Cities Walk for MS this year, we spoke about people with MS and how they’re referred to. Some people refer to them as clients, some as consumers. And you said, "Why deal with either of those? They’re people - people with MS."

YVES SAVOIE: The MS Society is here because there were people with MS or affected by MS who created it. We’re not standing above the people affected by MS. I've been influenced by people who conceptualize disability as not being about what's wrong in the person who has the disability, but as a reflection of what’s wrong in our society. People with MS who participate, for instance, in the MS Walk are there as contributors to the Society. They’re not there as our clients. They’re our lifeline, the embodiment of what the Society is all about. To use "client" to refer to people who volunteer in different contexts, who serve on committees and boards, reduces their range of impact, and the impact we have in our relationships.

RC: Historically, the MS Society has been thought of as a two-pronged organization that does both service and research. You bring more of a consumer focus - you’ve held consultations across the country and invited people with MS to participate.

YS: The MS Society has a dual mission, and people with MS tell me we must continue to have a dual mission. We’ve conceived of it as service and research, but let’s re-conceptualize it for a moment: finding a cure and improving quality of life. And I think when you focus on quality of life, one of the things we do a lot of is to be partners with people in asserting their rights, creating the tools or helping them navigate the system. Increasingly, we press governments to be more responsive. In the consultations, I found there is a real appetite for the Society to play a greater role in making sure that governments are responsive to MS-related issues.

RC: You’re referring to a domino effect - one can’t really deal with MS outside of the context of other disabilities.

YS: Absolutely. The work we do involves collaboration. For example, there is the reality of episodic disabilities, such as those experienced by many people with MS. We’re in dialogue with organizations interested in the reality of people with AIDS/HIV to possibly seize an opportunity to make changes with the federal government about employment insurance, so that the system is better equipped to respond to people who enter and exit the employment market because of different episodes or the progression of their disability. The Society will be a rigorous, systematic, evidence-based partner and contributor to policy conversations.

RC: Can you tell Abilities more about your national consultations? What did you learn?

YS: I arrived in February, and from March to June, there were 19 consultations across Canada. Those conversations were about the future of the Society in terms of vision and plan. As part of my role, I bring ideas and create a vision, but I also listen actively to ensure that people who are part of our shared enterprise - people with MS, people affected by MS as caregivers, children, parents, volunteers - have a voice in that process. Part of the personal contribution I want to make is to increase the level of engagement in decisions we make, in our work. And that, in large part, is what the consultations were all about.

RC: What are the next things on the horizon for MS?

YS: Over the past 15 years, there have been pharmacological developments that have changed the reality for some people, particularly those who have relapsing MS, in terms of slowing the course of the progression. The research agenda holds promise, and I hear from everyone that Canada plays a very, very significant role. Leveraging that potential, both the research community in Canada and the recent significant investments in our research infrastructure - the creation of the Canadian Institutes of Health and Research and the Society’s capacity to fund research - will be quite promising. In terms of quality of life, we’ve talked about government advocacy. I know the appetite is there. We’ll build on important work that the Society has done, but I think you’ll also see a new focused energy and more people involved at different levels, and that's in line with my own appetite to contribute on that front.

For more information about the MS Society, please visit http://www.mssociety.ca