Contact Us
Our Location

Centre de Recherche de l'Institut Universitaire de Gériatrie de Montréal (CRIUGM) 4545, Chemin Queen-Mary, Montréal (Québec) H3W 1W4

Telephone Number

(403) 220-2276

Email Address

national.manager@copn-rpco.ca

PCAC Members

Parkinson Community Advisory Committee

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

For any questions, please contact: Iris Kathol, ikathol@ucalgary.ca



MEET OUR MEMBERS



BARBARA

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:

http://MimeOverMind.com

https://parkinsonseurope.org/what-parkinsons-feels-like/

https://www.michaeljfox.org/news/mjff-guest-blogger-barbara-salsberg-mathews-re-illustrating-5-stages-parkinsons-women

 




MANON

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

https://mewe.com/join/everythingaboutparkinsons

r/youngparkinson an online group on Reddit for patients diagnosed with yopd

https://www.reddit.com/r/youngparkinson/s/urjt7dPgYA

 

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

 




LAURINE

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 means 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.

Get involved in whatever way you are able!

Links:

https://www.laurinefillophotography.com/



MARK

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.

My LinkedIn profile:  Mark Taylor | LinkedIn



VIRGINIA

Let me begin this profile by sharing my personal mantra” Yes, I do have Parkinson’s disease, but it does not have me” and I am determined to not let this disease detract away from who I am as a person. I will turn 79 in October 2025, and I was officially diagnosed in 2015, but I am aware that I had numerous symptoms for a few years prior to that. I was born and raised in Woodstock, Ontario and lived and shared my early years with my parents and my elder brother, all of whom have predeceased me. I was ordained an Anglican Priest in 1977, being the first female graduate of Theology from Huron College (UWO) to be ordained in the Diocese of Huron. There is no question that my first years of ministry were that of a ‘pioneer’, breaking new ground in a male-dominated profession. After a number of years in Parish Ministry and after my certification as a Clinical Pastoral Education (CPE) Teaching Supervisor, my ministry focus turned to the Hospital setting. In 1988 I was hired by the Vancouver General Hospital (VGH) to establish a Department of Pastoral Care and develop an Intern and Residency CPE program. Since leaving VGH in 1995 and facing the cutbacks impacting Pastoral/Spiritual Care programs, I ended up teaching and supervising training programs in the USA and eventually retiring from the University of Iowa Hospitals and Clinics, where I worked as a Chaplain Educator for the last four years of my ministry.

I also trained as a Psychotherapist and reached Associate Teaching Supervisor in Pastoral Counselling. Prior to moving to the USA, I worked as a therapist in my own private practice as well as a Counselling Centre and completed one year of the Psychoanalytical Psychotherapy training program at the Toronto Psychoanalytic Society. Part of my training as a Teaching Supervisor as well as a Psychotherapist was to be in a therapeutic relationship as a client, where I was invited to explore my own strengths and growing edges. Working over 5 years with a psychoanalyst was certainly a challenging experience where one is opened-up to their own vulnerabilities and invited to explore their own defense mechanisms, resistances, power dynamics etc., which I believed helped me to come to a much deeper understanding of who I am as a person and what can possibly challenge my defense mechanisms. This deeper understanding of my personality has helped me to develop a stronger inner core, which in turn has assisted me in coping with the realities of living with Parkinson’s on a daily basis. Self-awareness, I believe, can be a real strength in dealing with Parkinson’s disease.  As a Priest, my faith has been and continues to be a source of strength and courage as well as I continue my journey in life and face the realities of living alone and dealing with Parkinson’s.

Growing up as a child I loved the outdoors where I could discover new things each day by simply turning over stones and seeing what may crawl out from under it.  Needless to say, I was a curious child and I still value my curiosity. I was also quite athletic, playing hockey, football, baseball, cricket (long before girls did) but my real love was to be in the water. Swimming became an integral part of my life as a child and youth, swimming on the local swim team, and this continues to this day as I am a Master’s Swimmer and I still compete at the local, Provincial and national level. I have been a member of the London Silver Dolphins for almost 30 years and deeply value all the relationships that I have developed with my team members and Master’s swimmers across Canada and other parts of the world.

Why I joined the PCAC:

In February 2024 I was invited to participate in the C-OPN, Western University Site research study because I had been diagnosed with Parkinson’s disease and had indicated an interest in future research studies.  Since I became a PCAC member, I have struggled for some time trying to understand the role of the PCAC and its members. Initially I felt like I was ‘running after a fast train, trying to get on-board and then discovering I really didn’t know where the train was headed’. As I have continued to attend the monthly meetings, I have begun to realize that C-OPN is relatively new in its development as it continues to evolve. With the reality of some changes in my health and work life over this past year, I have not been able to give the attention I felt I needed to discern my role on the PCAC. Having now completed my work contract, I do hope to explore more thoroughly what my role may be, especially in terms of understanding and interfacing with the Parkinson Society Southwestern Ontario.

What does C-OPN as an organization mean to me?

As a person living with Parkinson’s and having participated in the Michael J. Fox Foundation ‘Fox Insight’ study for a couple of years, I have gained a fuller understanding of the disease and its complexities. Also having worked in health care facilities in the USA for a number of years, I do appreciate the financial differences between Canada and the USA especially in terms of support for research. Having identified this and having now had some initial exposure to the work of C-OPN here in Canada, I feel it is incredibly important that C-OPN be supported as it evolves as Canada’s central arm in terms of Parkinson’s research.

What can I contribute to this network and especially to this PCAC?

As indicated above, I am still in the early stages of trying to understand the role and work of C-OPN and the PCAC. I will continue to attend the meetings of PCAC and initiate more contact with its members to gain further understanding of how they perceive their role and work as a PCAC member. As I have come to recognize some differences in how the various regions/provinces work and connect with C-OPN, I will seek to discern what may be most helpful in terms of building working relationships within the geographical area that I live within. As the Parkinson’s Society Southwestern Ontario (PSSO) has four regions that it covers it will be important for me to connect with the CEO initially to gain an understanding of how PSSO functions and how I may play a role as a member of the PCAC. I am also interested in connecting with the four region’s Community Engagement Coordinators, especially in terms of exploring how the Parkinson’s patients in their areas may benefit from participating in C-OPN research. As I continue to discern my actual role as a member of PCAC, I would appreciate any possible feedback with regards to the suggestions I have identified above, especially if it is felt that they may not be appropriate steps for me to pursue.

Why I and you should participate in PD research:

In order for research to be credible it must seek to understand the ‘subject’ of its research and what better way for C-OPN to achieve this than to involve persons actually living daily with Parkinson’s disease.  As one who lives this experience and still has an ability to communicate fairly readily what that means day to day, I feel it is important to share what limited insights I may have as a way of broadening an overall understanding of the disease. I also believe, I have a role in helping others living with Parkinson’s to share their experience as well, thereby broadening an understanding of the ‘lived experience’. As a Master’s swimmer and having participated in numerous National Masters Swim Championships, where I swam in several events, including the 1500m and 800m freestyle races prior to my diagnosis, I decided that I wanted to ‘dedicate’ a 1500m swim to support the work of the Parkinson’s Society here in Southwestern Ontario. I was able to raise $4500 when I swam the 1500m free race a few years ago! It is my hope moving forward that I will discern more what my role may consist of and what initiatives I may want to engage in, especially in terms of connecting with the four regions of PSSO Community Engagement Co-ordinators.