Raising the voice of people affected by Parkinson’s has always been an important priority of Parkinson Canada and was one of the guiding principles behind Karen Lee’s CEO Listening Tour this summer, hosted just months after joining the organization. What became clear there is the priority for a greater inclusion of the Parkinson Voice – your voice – in the organization’s decision making.

A formal council accountable to the CEO is being established in response. Parkinson Canada has intentionally sought engagement of the Parkinson Community at key moments throughout the organization’s history, and the establishment of this council will formalize this process ensuring that people living with Parkinson’s and their needs are at the centre of everything the organization does. The council will be tasked with helping to build a comprehensive engagement strategy to bring forward the perspective of lived experience with Parkinson’s. This will help to centre Parkinson Canada’s work on keeping Canadians with Parkinson’s strong, resilient and determined to live well: No Matter What.

“What has become clear to me in my time at Parkinson Canada is the importance of hearing from the many diverse voices and perspectives of people impacted by Parkinson’s. Without your voice, there would be no Parkinson Canada. We believe that people with Parkinson’s, their care partners, and family members should have a guiding voice in shaping the research, advocacy, and community engagement work of Parkinson Canada,” says Karen Lee, President and CEO of Parkinson Canada.

PAC will serve as an advisory council to the CEO and organization to:

• Incorporate the perspective of people impacted by Parkinson’s into all we do,
• Provide insight and expertise into key program and strategy decisions of the organization
• Champion the vision, mission, and initiatives of Parkinson Canada.
• Be the driver of Parkinson engagement across Parkinson Canada.

“We are very excited to establish the Advisory Council as it will be the driver of Patient Engagement across Parkinson Canada,” says Todd MacPherson, VP, Community Engagement who will manage the Council along with key staff.

Photo of Todd MacPherson, VP Community Engagement of Parkinson Canada

Details and call for applications

The Parkinson Advisory Council will be comprised of people living with Parkinson’s who are the “experts by experience” with 12-15 members. This will be a diverse and inclusive representation of Canadians diagnosed with Parkinson’s, care partners, family members and others with lived experience from a broad range of backgrounds and represent diverse genders, expertise, socio-economic levels and cultural demographics.

Individuals will be volunteers who, after application and interview, will be chosen by a selection committee comprised of People with Parkinson’s, key volunteers, and staff. A commitment to and prior engagement in the ongoing work of Parkinson Canada plus a passion to make a difference in the Parkinson community will be essential.

The Parkinson Advisory Council is separate from the Board of Directors and staff and does not serve members’ personal agendas or local goals. The work of the PAC supports Parkinson Canada and the Parkinson communities across Canada.

PAC will advise and report to the CEO and is managed by the VP, Community Engagement, with staff support from the Manager, Public Affairs and Partnerships.

The responsibilities of the PAC are:

1. To advise and make recommendations to the President & CEO on key programs and strategy decisions that address the unmet needs of people affected by Parkinson’s.
2. To co-create the Parkinson Canada patient engagement strategy.
3. To promote the inclusion of the perspectives of people living with Parkinson’s across all areas at Parkinson Canada.
4. To champion the vision, mission and initiatives of Parkinson Canada.
5. To represent the PAC on additional internal Committees to ensure consistency and facilitate knowledge exchange.
6. To be accountable to Parkinson Canada and adhere to Parkinson Canada’s policies and procedures.

PAC members will serve for a three-year term. It will have a Chair and a Vice Chair, who are identified by a nominating committee that is also comprised of PAC members and staff. Typically, the Vice Chair steps into the Chair role in their second year of leadership.

PAC members will be asked to commit a minimum of four hours per month that will include a monthly conference call plus other work arising from the council’s agenda. Meetings will be held via a videoconference platform.

Applications closed on January 25, 2021.