The 6th World Parkinson Congress (WPC) was the first WPC with major representation from the Canadian Open Parkinson Network (C-OPN). Held in Barcelona, Spain, in July 2023, WPC offered a unique opportunity for nearly all C-OPN stakeholders to be united in one venue. This included core C-OPN staff, research members, industry partners, funding agencies, people living with Parkinson’s disease (PD) or Atypical Parkinsonisms and enrolled as C-OPN participants, as well as their caregivers.

So what is C-OPN exactly? C-OPN is a Canada-wide research participation platform that bridges researchers, people with Parkinson’s, and data to accelerate discoveries. Participation in C-OPN involves 3 key components: (i) collection of data in the C-OPN database (including information on your disease, lifestyle, family history, and other symptoms); (ii) collection of a blood sample in the C-OPN biobank; and (iii) enrolment in the participant registry, which will keep you informed about upcoming research studies looking for participants in your local area. There are currently 11 C-OPN sites, located in 10 cities across Canada, including Vancouver, Calgary, Edmonton, Toronto, London, Ottawa, Montreal, Quebec City, Lévis, and Halifax. C-OPN was started in June 2020 – thanks to our founding partners, Parkinson Canada and Brain Canada – and has now enrolled over 1800 participants across Canada and supported more than 30 research projects committed to improving our understanding of PD and related disorders.

This past year at #WPC2023, C-OPN presented a poster that was geared towards increasing awareness about our organization, not only among researchers but also with people living in Canada with PD or Atypical Parkinsonisms. It was a wonderful experience to get to speak with different conference attendees, while also catching up with familiar faces. We also met with people working in similar organizations from around the world, and learned about their strategies at advancing research through collaborations, capacity building, fundraising, trials, and campaigns. This included the Michael J. Fox Foundation, the Transforming Parkinson’s Care in Africa (TraPCAf) group, and the Parkinson’s Foundation, among many others.

Crucial to research is the involvement of people with Parkinson’s or a related disorder or care partners. In order to ensure that our goals at C-OPN were aligned with the goals of those directly impacted by Parkinson’s, we created the Parkinson’s Community Advisors Committee (PCAC) in January 2022. Composed of people either living with PD or a related disorder themselves or acting as a care partner to someone with PD, this committee has made invaluable contributions to C-OPN during key decisions across the Network. We were fortunate to have two members of the PCAC, Dianne Bramble and Richard Mayede, join us at #WPC2023.

An artist and health coach based in Ottawa, Ontario, Dianne was invited to participate on a panel in the Book Nook at #WPC2023 in a session on Creativity and PD. When reflecting on the experience, Dianne recalls “speaking on the panel about art and Parkinson’s disease was nerve wracking, but fun. I was able to showcase my book and hear from 3 other very talented people. The questions the audience asked were respectful and insightful. I would love to do it again.” Dianne’s passion for art and writing was reignited after being diagnosed with Young Onset Parkinson’s. She says “Parkinson’s has affected my art by inspiring me to do my best. I loved art before, but I didn’t really start painting until after my diagnosis. It takes me out of my body for a while, and gives me an outlet for my emotions.” More information about Dianne’s art can be found here, and more information about Dianne’s books can be found here.

Richard is a long-time attendee of WPC. “I have attended Portland, Kyoto, and Barcelona. Each one had a different meaning for me. Portland opened my eyes to what is possible in advocacy work. Kyoto showed me that deep bonds of friendship can be made. Barcelona showed me that it's possible to travel independently while I'm still mobile,” he says. While wandering the booths at #WPC2023, Richard approached Dr. Patty Lee, CEO and co-founder of Orbit Health. “Through initial small talk, [I] found out she's Canadian!... So that gave me an in to talk about C-OPN.” Richard’s initial introduction has led to ongoing to talks with the Orbit Health team, with very strong potential for future collaboration between our organizations. “What motivated me to talk to her about C-OPN is that if I'm talking with people who need data to help their study, research, product development, etc...it only makes sense for me to introduce C-OPN. Will it benefit them? I don't know, but it never hurts to talk about C-OPN,” says Richard.

Richard calls WPC “Parkinson’s Disneyland”. For 4 days, the host city becomes a safe haven. “You’re surrounded by people who truly care to fight the disease and you don’t have to worry about being too tired or too dyskinetic. Everyone is understanding and non-judgemental,” reflects Richard. Venues like WPC that unite researchers, clinicians, industry partners, and people directly impacted by PD in one room, make the ultimate goal of finding a cure for this debilitating condition possible. We need to work together to achieve significant strides that bring us closer, step by step, to ending Parkinson’s.

Marisa Cressatti, PhD is a Knowledge Translation Lead with C-OPN at the University of Calgary, and also a medical student at the School of Medicine, Queen’s University. She was an abstract presenter at the WPC 2023.
𝕏: @MarisaCressatti

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®