Putting Parkinson’s on the Map: Our first 50 Years

Since 1965, Parkinson Society Canada (PSC), together with its regional partners, has reached into cities, towns and rural areas across the country to provide education and services, to lobby governments and create a National Research Program. We have truly put Parkinson’s on the map through heightened awareness and scientific discoveries, not only in Canada, but also around the world.

From our beginning as a single entity, the Canadian Parkinson’s Disease Association, we have grown to more than 250 chapters and support groups, working with regional partners from coast to coast. We are the national voice for Canadians living with Parkinson’s.

Then and Now

Throughout 2015, we will highlight our history, our accomplishments, and the pioneers who have moved the Parkinson’s cause forward. From leaders to front-line volunteers and from corporate supporters to researchers, thousands of dedicated people have helped raise awareness and improve the lives of those living with Parkinson’s.

One of those individuals was Dr. André Barbeau of Montreal, the internationally recognized neurologist who, in 1960, initiated research that demonstrated Parkinson’s resulted from a dopamine deficit. Dr. Barbeau was among the inaugural Directors attending the first meeting of the Canadian Parkinson’s disease Association in Toronto, along with the mayor Charles Mortimer, Q.C., and another Parkinson pioneer Dr. Ronald Tasker.

For more than four decades, levodopa has been widely available as the gold standard treatment for Parkinson’s disease. During this time, research into diagnosis, causes, complications and treatments has exploded. Research is incremental and methodical, and scientists are making headway to better understand the causes and progression of this complex disease, while moving closer to finding a cure. A subsequent issue of e-Parkinson Post will highlight some of the breakthroughs made by National Research Program funded researchers.

In 1981, PSC awarded the first research grant of $150,000 to Dr. Clement Young of Toronto Western Hospital/University of Toronto. Since then PSC has invested more than $24 million through the National Research Program to fund 450 awards, fellowships, and grants that teach us more about causes, biomarkers, neuroprotection, complications and treatments.

It’s been almost 200 years since James Parkinson wrote his 1817 Essay on the Shaking Palsy. Much of his essay commented on the lack of effective treatments available. In an article on Dr. Parkinson, author Dr. Patrick Lewis comments: “I think James Parkinson would marvel at the progress that has been made in diagnosing, understanding and treating the condition that now bears his name.”

We marvel too at the personal strength, courage and optimism demonstrated by Canadians living with Parkinson’s. And we are grateful for the ongoing support of our donors and volunteers who make our mission possible, including providing information and support through the National Information and Referral Centre, and educating the public and health professionals through webinars, websites, social media channels and publications. We advocate for social benefits, access to treatments, research funding and genetic fairness. We raise funds to invest in education, support groups and our National Research Program. We developed and distributed the first Canadian Guidelines on Parkinson’s Disease, written collaboratively by neurologists and movement disorder specialists from across Canada, with input from people with Parkinson’s, surgeons, family physicians, nurses, allied health professionals, and Parkinson Society Canada to provide a consistent standard for health care professionals to diagnose and treat their patients.

At the heart of every great discovery is a personal story. We hope you will connect us with other Parkinson pioneers that have made a difference to you and others. Throughout our 50th anniversary year, we would like to share these stories, memories and anecdotes of living with Parkinson’s with our audiences. Tell us about the changes you’ve seen or accomplishments you’ve witnessed. And tell us how Parkinson Society Canada has been there for you. Post a comment below this article, or get in touch at communications@parkinson.ca, follow us on Facebook or tweet us @ParkinsonCanada and we’ll follow up.

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