A Future without Parkinson’s?

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Parkinson Canada invites people living with Parkinson’s disease to join the Canadian Open Parkinson Network (C-OPN) to be part of the solution to improve lives for those living with Parkinson’s and ultimately to help discover a cure.  To find out more about COPN, visit www.copn-rpco.com

Read about one C-OPN participant in Quebec, Linda Bérard, diagnosed in 2013 with Young Onset Parkinson’s disease.

“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 proud 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,” says Linda Bérard.

Linda sat in the waiting room, anticipating what her family doctor would say about her recent tremors and not knowing what to expect. He immediately referred her to a neurologist and movement disorder specialist. It was early in the summer of 2013, at the age of 44, that Linda received the shocking news that she had Parkinson’s disease.

“I always thought that Parkinson’s was an old person’s disease and this diagnosis was tragic for me. However, I have come a long way and am far more knowledgeable today about Parkinson’s and I now focus on helping others understand this disease,” says Linda.

As luck would have it, over the seven years since her diagnosis, Linda would be cared for by some of the best, starting with Dr. Edward Fon. Dr. Fon is the Scientific Director of the Montreal Neurological Institute, Professor at McGill University, Co-director of the Canadian Open Parkinson Network (C-OPN), and Director of Quebec Parkinson Network (QPN). He asked Linda if she wanted to participate in research.

“To date, I have participated in several research protocols and, to the best of my abilities, I will continue to do so,” she says.

Linda’s decision to register with QPN/C-OPN is driven by her commitment to help others. Her daughters were teenagers in school when she was diagnosed. Today they are young mothers who gave birth on the same day, 8 hours apart, and a third granddaughter was born in March 2020.

“We all need to do our part and I am choosing to participate in trials, knowing that I am doing this for my kids, my grandkids and our future generations,” says Linda.

Not one to sit around and wait for a miracle, Linda founded a non-profit organization / support group called “EntraidonsNous” translating to “Let us help each other” in English https://entraidonsnous.ca/accueil in partnership with Quebec Parkinson Network. Their mission is to support newly diagnosed people with Parkinson’s disease, and their care partners, who play a critical role in disease management and quality of life. She has made lasting friends as they share information with one another and with other Parkinson’s groups. Linda travelled to Japan in 2019 to exhibit her support group activities at the World Parkinson Congress last year.

Watch her WPC video https://vimeo.com/387139520/68842ea3e3

“I feel lucky and grateful to have the medical support, the great doctors, and access to a main facility of specialists. People with Parkinson’s need reliable information from the experts, and not necessarily what they find online with searches. And a good support group can work wonders,” she adds.

Indeed, her attitude towards Parkinson’s disease has significantly changed since her diagnosis in 2013. What was originally perceived as a tragedy, has now transformed into a mission to create a better world for the next generation.

To ensure this initiative will have the greatest impact, the network needs people with Parkinson’s disease and Parkinson Plus (Atypical) Syndrome across Canada to register and participate in moving science forward at a more rapid pace.

Last month, Dr. Antonio Strafella presented an intimate Town Hall with early registrants for September’s Parkinson Canada SuperWalk event. In that session, shared in full below, he spoke on his perspective on the role of the Canadian Open Parkinson Network, C-OPN, on the Canadian and international research landscape and on how people with Parkinson’s can partner with the research community as part of this project.  Join us at SuperWalk on September 12 to fuel research progress through C-OPN and beyond.  https://www.youtube.com/embed/R9-9P0S5gHE

To find out more about COPN, visit www.copn-rpco.com or email communications@parkinson.ca

Editor’s Note:  World Parkinson Coalition Partner Highlight webinar was held live on July 30, 2020 with Coalition partner, Parkinson Canada.

Parkinson Canada’s CEO, Karen Lee, PhD, was joined by leading Canadian Parkinson researchers and co-leaders of the C-OPN, Drs. A. Jon Stoessl, Oury Monchi, and Edward “Ted” Fon, to learn about the new Canadian Open Parkinson’s Network (C-OPN) designed to accelerate Parkinson’s research.
To watch the panel discussion visit: https://youtu.be/23g1Lb8LeqI

If you would like to sign up to be a part of the Canadian Open Parkinson’s Network (C-OPN) to help accelerate research across Canada, and ultimately the world, visit this link to: SIGN UP FOR C-OPN.

Questions?  contact communications@parkinson.ca