Why I joined and what does it mean to be part of C-OPN ?
As a caregiver to my husband who has lived with Parkinson's since he was 40 years of age I wanted to be more involved on a national level. I have worked with PSBC since he was officially diagnosed and continue to volunteer locally.
I put my application to join C-OPN to be part of moving forward with research on Parkinson's and to gain a better understanding of the effects/outcomes of the research being done in Canada.
Also to gain more information on what is being done on the world wide basis, through the world conferences.
Enjoy hearing from the students and professors in the research projects that are being conducted and how it can impact the people living with the disease and their caregivers.
Also have met some amazing and fabulous people living with Parkinson's and their journey.
Sandra Alexander, husband diagnosed at 40,
My name is Manon Day. I am 39 years old.
In 2011 at the age of 27, I was diagnosed with young onset Parkinson’s at the Montreal Neurological Institute.Being a rare case of Parkinson’s,I strongly believe participating in research is important.Therefore, I want to contribute for the advancements of knowledge of Parkinson’s. Making a difference is very impactful.
Manon Day, 39, diagnosed in 2011,
The Calgary Parkinson Research Initiative [now linked to the Canadian Open Parkinson Network] was well organized and comprised of two site visits of 3 hours each. The research coordinators were well prepared and this made participation enjoyable. I consider it a privilege to have the opportunity to advance research in Parkinson’s disease. Get involved… What are you waiting for?
Laurine Fillo, 55, diagnosed in 2003,
It was early in the summer of 2013, at the age of 44, that we received the shocking news that I had Parkinson’s disease. And it was shocking. A total Knock Out … .3,2,1 out! Our life was turned upside down, and we sought to better understand this insidious disease that invades me. When Dr. Fon told us about the Quebec Parkinson Network [now linked to the Canadian Open Parkinson Network], I registered without hesitation. As parents (and now grandparents), our greatest wish is to win the fight against this chronic and degenerative disease so that generations following us will speak about Parkinson’s as a curable disease. To date, I have participated in several research protocols and, to the best of my abilities, I will continue to do so.
Linda Bérard, diagnosed in 2013,
The Parkinson’s research registry is important and should be recognized. It not only records data, but also gives out information that can guide future research. I enjoy working with the researchers and being part of a larger community of volunteer participants. I want to pay back prior study participants, who helped research that I benefit from and now I can pay it forward to future generations. This is your chance to be part of the future knowledge of Parkinson’s disease.
Eldean Kathol, 88, diagnosed 34 years ago,