Research is a foundational cornerstone of Parkinson Canada’s mandate. Your support fosters research innovation through the Parkinson Canada Research Program and Canadian Open Parkinson Network, programs governed by strong scientific leadership. We are excited to announce a newly formed advisory committee dedicated to research and other critical matters. The Research and Clinical Advisory Committee (RCAC) is responsible for advising the Board of Directors on the state of Parkinson’s research, clinical care, and emerging trends relevant to the Parkinson’s community. The RCAC also oversees Parkinson Canada’s Research Program and recommends research funding to the Board. The Board approved this newly formed committee in March of this year.
The RCAC will be comprised of 15-18 members. It will include members of the scientific community, the clinical community, health professionals engaged in patient care and patient advocates, and a director of the Parkinson Canada Board. In the recent kick-off meeting, the Committee began to set the groundwork for the vital work ahead, reviewing the mandate and history of the current Parkinson Canada research program and having preliminary discussions about new research opportunities.
The Committee will allow Parkinson Canada to better leverage the expertise and talent within the Canadian Parkinson’s research and clinician community. Moreover, it will facilitate changes to the research program that reflect the priorities of the Canadian Parkinson’s community, from researchers to clinicians and, of course, people affected by Parkinson’s. The collaborative nature of the committee will also help ensure that Parkinson Canada stays on top of emerging trends.
Long-time Parkinson advocate John Parkhurst sits on the RCAC as a patient advocate. He knows what it means to be a care partner and considers himself a strong advocate for caregivers. His wife, Margot Bartlett, a retired registered nurse, has lived with Parkinson’s for over 30 years. Both have served on the Parkinson Canada Board of Directors. Just before speaking with us, Margot and John had undertaken a 10-hour day in making the drive to visit her Parkinson specialist; they are well aware of the challenges of access to care, though they consider themselves relatively fortunate in that regard. (You can read more about their story here.)
We asked John for his perspective on the benefits of the new committee.
“The elements of this committee have always been present, but other individual committees have handled them. This committee will make many of these elements more centralized, and therefore the research environment will be more efficient.”
In his years of involvement with Parkinson Canada, John has come to appreciate the high quality of researchers in Canada and their innovative work.
“What I’m hoping we can do with this committee, in addition to helping researchers leverage their resources, is to bridge those connections between deep research and science and be able to relate that to people with Parkinson’s and the public so that they get more of a sense of what we do. It’s important that people with Parkinson’s and their families can know where we’re going with this research. This committee will help Parkinson Canada in continuing to be the go-to source for Parkinson’s knowledge.”
In his patient advocate role, we do not doubt that John, along with the other members of the RCAC, will make a pivotal contribution to Parkinson Canada’s ongoing commitment to providing the best evidence-based information for Canadians living with Parkinson’s. We will keep you apprised of their work.