15th May 2025
The International Progressive MS Alliance has opened a call for nominations to select ten new
members for its People Affected by MS Engagement Coordination Team (ECT). This team represents all
people living with or caring for someone living with progressive MS, bringing their perspective and
lived experience to every facet of the Alliance’s work.
Nominations are open today through 27 June for anyone living with or caring for someone with
progressive MS. Individuals may self-nominate or nominate someone they believe would be a strong
candidate for this role. The Alliance is committed to building a team that represents a wide range of
perspectives, including those shaped by geography, race and ethnicity, gender, and lived experiences
with progressive MS.
The work of the ECT is focused on three main priorities:
- Providing perspective and lived experience, representing people affected by progressive MS for
Alliance work and strategies, including reviewing and evaluating research proposals - Ensuring the implementation of the Principles of Patient Engagement in Research in all the Alliance’s work
- Enhancing visibility for the Alliance’s work and instilling hope in those affected by progressive MS
“Solving progressive MS requires a coordinated effort, and it cannot be done without the voices and
experience of people living with this disease from around the world,” says Ruth Ann Marrie, vice-chair
of the Alliance’s Scientific Steering Committee and chair of the People Affected by MS Nominating Committee. “Their involvement and input ensure that the efforts of the Alliance are focused on
solutions that truly matter to people with progressive MS. We appreciate the work of the current team
and are excited to bring on new members to continue this important work.”
Participation in the Engagement Coordination Team is a two-year term, renewable once for a total
term of up to four years. Some of the responsibilities of this team include:
- Share your story and serve as a spokesperson for the Alliance, engaging with key audiences
- Represent the perspectives of all people affected by progressive MS during strategy discussions, scientific meetings and other events organized by the Alliance
- Read, review and evaluate relevant documents – including research proposals – and contribute to discussion on Alliance direction
- Participate and engage in other Alliance work teams and committees as requested
Vanessa Fanning, current chair of the Alliance’s People Affected by MS Engagement Coordination Team
says, “To all of us living with progressive MS, it’s incredibly important that we have voices
representative of our diverse community bringing their lived experience and perspective to everything
the Alliance does to solve the problem of progressive MS. Serving on this team plays a critical role in
shaping the priorities and strategy of the Alliance, and ensures that everything the Alliance does puts
the needs and expectations of people living with MS front and centre of its work.”
The new team members’ terms will begin in early 2026.
Information on how to nominate yourself or someone else, along with additional requirements,
responsibilities and preferred skills can be found here.