C-OPN strives to connect with the people who are affected by Parkinson’s disease (PD) or Atypical Parkinsonism (AP) while contributing data and bio-samples to PD research.
This is why we invited patients and caregivers from different Provinces to join our Parkinson Community Advisory Committee (PCAC).
This is a position for which interviews were conducted and since 2022 this group has grown to 14 members representing: British Columbia, Alberta, Ontario, Québec, Nova Scotia, and New Brunswick.
Meetings take place virtually on a monthly basis, and PCAC members influence how C-OPN operates in different meaningful ways by providing their unique perspective.
News: Currently looking for a representative from Nova Scotia
I’m a 66-year-old artist who was diagnosed with Parkinson’s disease (PD) in 2020, though my symptoms began at least a decade earlier. Despite the challenges, I’ve developed innovative techniques to continue my work. For instance, I use a fold-out stick to support my drawing and painting arm, which prevents my hand from dragging. I’ve even turned my hand tremor into an advantage: I’ll put a pencil in my hand and let the tremor do the shading for me while I rest.
My background as a professional mime artist has also proven invaluable. By becoming hyper-aware of my body’s movements, I’ve learned to counteract many frustrating PD symptoms. When my right foot starts to drag due to “drop foot,” I consciously focus on placing my heel down first. Similarly, visualizing a coat hanger helps me automatically pull my shoulders back into their correct posture.
What does C-OPN mean to me?
I joined the Parkinson’s Community Advisory Committee (PCAC) to give back to our Parkinson’s community. This committee offers a vital platform to learn about the latest research that directly impacts our daily lives and contributes to finding a cure for Parkinson’s disease. Through the PCAC, I feel empowered to be an active advocate, influencing individuals and organizations across Canada about the urgent need to empower people living with Parkinson’s.
What can I contribute to PCAC and the network?
The Canadian Open Parkinson Network (C-OPN) plays a crucial role in connecting researchers and studies with individuals living with Parkinson’s. C-OPN helps to accelerate communication among scientists and ensures the timely sharing of vital information among all stakeholders. For me, C-OPN offers hope in the quest for a cure by efficiently linking researchers with PD participants.
I’m eager to contribute my unique skills and experiences to this network and especially to the PCAC. As a professional mime and illustrator, combined with my background in education, I enjoy using these abilities to support my fellow Parkinson’s community members in any way I can.
Links to different initiatives that I am involved in:
My name is Manon Day. I live in Montreal, Quebec. My first neurological symptoms started at age 17.
I experienced orthostatic hypotension, syncope, stuttering, trouble moving, slowness along with many other symptoms.
Over the years, I consulted several neurologists but none of them believed me. In 2011, I had the chance to be referred to the Montreal Neurological Institute. Dr. Postuma diagnosed me with a rare form of young onset Parkinson’s at the age of 27 years old.
What does C-OPN mean to me?
I decided to join the Parkinson Community Advisory Committee (PCAC) in September 2023 because I want to contribute to the Parkinson’s community. My participation within this group gives me a sense of purpose and fulfillment. Finding out more about the cause of Parkinson’s is very important for me. My unique journey could help contribute to greater understanding of the disease.
What can I contribute to PCAC and the network?
The C-OPN organization plays a crucial role for research participation and recruitment. Many patients are unaware of Parkinson’s trials and research in general. This organization desires to make a positive impact for the advancement of Parkinson’s. I strongly believe the community engagement is very beneficial.
My unique personal experience with Parkinson’s can help contribute to better understanding, and knowledge of this complex disease. My feedback can be useful for participation on different projects. Involving patients in the research process brings a different perspective for the research community.
I strongly recommend fellow Parkinson’s patients to participate in research. Patient involvement is crucial for the advancement of understanding of Parkinson’s and for the acceleration of discoveries. Therefore, patients play an important role for the development of new innovative treatments. Helping future generations of patients afflicted with the disease as well as improving quality of life and care. Patients have a sense of fulfillment and contribution in the Parkinson’s community.
On a different note, I am the administrator of two Parkinson’s online groups.
“Everything about Parkinson’s disease” on the Mewe social network
I enjoy posting reliable content and educating fellow Parkinson’s patients. Communicating with patients helps to cope better with this life altering disease.
You will find below the link of the Parkinson Canada webinar (February 2025)
“The relationship of a parent having a child with YOPD”
I was diagnosed with Young Onset Parkinson’s when I was 38 years old, so have now been living with the condition for 23 years. I enjoy being active with biking, dancing, and tennis. I like the expression, “Move it or Lose it”, meaning the more I move, the more I can move!
I also enjoy photography, painting, playing the piano, playing pool, and reading.
I was a participant in the Vyalev clinical trial for the past 5 1/2 years and have recently starting using the commercial infusion pump and protocol.
Why did I join the PCAC?
I joined the Parkinson Community Advisory Committee (PCAC) to help bridge the gap between Parkinson’s researchers and those of us living with Parkinson’s. I have been given the opportunity to provide feedback at the early stages of the research process. This helps to ensure that research being undertaken aligns with the needs of people living with Parkinson’s.
What does C-OPN mean to me?
My involvement with C-OPN allows my voice to be heard along with so many others that I represent from the Parkinson’s community. My involvement has included being a member of C-OPN’s Executive Committee, capturing images, and providing feedback in the creation of C-OPN’s website, and being a PCAC member.
What can I contribute to PCAC and the network?
Through my involvement with C-OPN, I provide a lived experience perspective, which is valuable to researchers, to keep the focus on the key issues of this complex neurological condition. In addition, I have learned so much and been very inspired by engaging with my fellow PCAC members.
Why you should participate in research:
I consider participating in research to be an honour and a responsibility. As a researcher you can have the best ideas and a great lab, but if you have no participants…you have nothing. New and innovative research could lead to improved symptom management or even a cure.
I am 46 years old and was diagnosed with Parkinson’s disease when I was 44.
What can I contribute to PCAC and the network?
Since I got diagnosed, I wanted to meet other people with Parkinson’s and see what I could do to help research. This was why I joined the Parkinson Community Advisory Committee (PCAC). I believe in the excellent work C-OPN is doing and learning about the research taking place across Canada gives me hope. I hope to contribute to the network and the PCAC by getting a C-OPN site established in New Brunswick and sharing any contacts and information that may help C-OPN and the PCAC.
Why you should participate in research:
I really believe, the more people get involved in research, the more progress we will make towards finding a cure for Parkinson’s.
When I am not working, I enjoy travelling and spending time with my family.
I am a 60-year-old retired man, diagnosed with Parkinson’s five months ago. I have been married for over 30 years, we have three grown children, and one dog, Riley, who keeps me moving with our daily walks. I stay active with workouts several times a week, and I also volunteer at a long-term care home near our home.
Why did I join the PCAC?
I joined because I want to be part of the conversation that shapes research and care. Getting this diagnosis was difficult, but being involved helps me turn it into something positive — a way to give back and support others on the same path.
What does C-OPN mean to me?
C-OPN gives me hope and a sense of purpose. It’s a place where people with Parkinson’s, researchers, and professionals come together, and it makes me feel like I am not just living with Parkinson’s, but actively helping move the science and care forward.
What can I contribute to this network and especially to this PCAC?
I can bring the perspective of someone newly diagnosed — the questions, the challenges, and the optimism that comes with wanting to stay active and engaged. I am committed to being open and honest, and to making sure the voices of people living with Parkinson’s are always front and center.
Why you should participate in PD research as well:
Because research is the only way things will change. Every story matters: the more of us who get involved, the more complete the picture becomes. It is a way to take something none of us asked for and turn it into progress — for ourselves, and for the generations that follow.
My name is Richard Mayede and I had Deep Brain Stimulation (DBS) surgery in February 2021.
I was diagnosed with Young Onset Parkinson’s disease in June 2005 at the age of 37 and from that point forward I was determined to be a source of positivity and encouragement.
What does C-OPN as an organization mean to me?
After a successful interview in December 2021, I joined my first meeting with C-OPN in January 2022 as one of two Province Representatives on the C-OPN Clinical Investigators Committee.
The other successful applicant was Dianne Bramble! A year later, in October 2023, and with the addition of a few more PWP joining, the Province Representative Committee became what it is now, the Parkinson Community Advisory Committee.
Why did I join the PCAC?
I applied to C-OPN because I feel, if I can make a difference for future people with PD and make the process of finding out about the disease much easier, then I must take that responsibility!
What can I contribute to PCAC and the network?
I do what I can to support the Parkinson community including this Canadian network: I am a support group co-facilitator. I have raised funds for Superwalk since 2005. After over 10 years of fundraising for Superwalk, I wanted to do more for people with Parkinson’s. In 2016, I asked and was accepted, to join the Board of Directors of the Parkinson Society BC (PSBC). In 2017, 2018, and 2025 I acted as one of the faces of the PSBC’s April awareness campaigns, drawing attention to the many ways that the disease affects patients. My involvement in advocacy efforts in 2020 helped secure more operating room time for DBS surgeries in BC. In 2021, I had DBS surgery, which allowed me to win two consecutive grants in 2022 and 2023 to produce two documentary series based on people with Parkinson’s. I now serve as Secretary of the Board.
I also recently joined the board for Dancing with Parkinson’s
PWP don’t have to follow my path, but one should participate in PD research that one is comfortable with because the data one provides might be crucial to finding out new info on PD.
