An interview with Catherine Normandeau from the Canadian Open Parkinson Network on January 25, 2024 by George Ackerman, Ph.D, J.D.
Biography
I did my PhD in Neuroscience and then got involved in research project management. In 2019, I became the National Manager for the Canadian Open Parkinson Network, and though I left this role in 2023, I continue to be involved with the project.
Can you tell me more about your organization?
The mission of the Canadian Open Parkinson Network (C-OPN) is to unite and mainstream research efforts to more efficiently find ways to treat Parkinson’s disease. Our objective is to support large-scale, national research network that will dramatically enhance our capacity to uncover the answers and deliver the personalized treatments and services that improve lives.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is rooted in serving my community and creating a positive impact. I became engaged in Parkinson’s awareness through my position as National Manager. Despite having limited exposure to the Parkinson community prior to this role, I quickly developed a deep appreciation for the individuals involved.
What type of goals do individuals with Parkinson’s have when working with you?
As a part of the project aiming to connect individuals with Parkinson’s to research initiatives, I believe a common aspiration is for people to be engaged in the quest for a cure and to live well with the disease. This involves fostering connections with the broader community dedicated to achieving these shared goals.
What effect can it have on an individual with Parkinson’s?
People have shared with me anecdotally that participating in research brings them a sense of hope and optimism. While I acknowledge that this may not be everyone’s experience, I see it as a positive outcome of involvement in research.
What would you like to see as a future goal for your programs?
It would be wonderful to see increased participation in the network, with the hope of supporting research that can lead to meaningful breakthroughs benefiting the community.
What events do you participate in?
In my capacity, I haven’t personally attended numerous events, but some of my colleagues have participated in both the Parkinson Canada SuperWalk and research conferences.
How does this also assist the caregivers?
Caregivers are also welcome to join the network. Many research initiatives necessitate the inclusion of controls, providing researchers with a comparative understanding of factors associated with Parkinson’s disease versus those observed in individuals without the disease.
How can someone get in touch? What is your website?
Website: https://copn-rpco.ca/
How can others also become advocates for awareness?
You can easily sign up for C-OPN online, so feel free to share the link with anyone who might be interested.
In your opinion what is the key to effective advocacy?
My role is more focused on operations, so I don’t hold strong opinions on the matter of advocacy.
How can we better fundraise to support a cure for Parkinson’s?
Increased awareness and public demand often lead to more fundraising opportunities for research.
Why should people who don’t have Parkinson’s care about this?
I think we are all connected. Parkinson’s disease is the second most common neurodegenerative disorder. The pathophysiology of PD is not fully understood, in part because multiple manifestations of the disease exist.
Have you had any family members or relatives affected by Parkinson’s disease?
No, I don’t have anyone close to me who has been affected.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I have been consistently amazed by the Parkinson’s community.