Advocacy: Driving better policy

By Yvon Trepanier, Chair, National Advocacy Committee

Yvon Trepanier, Chair, National Advocacy Committee

Yvon Trepanier, Chair, National Advocacy Committee

In 2005, Parkinson Society Canada’s national advocacy committee set a big goal – to launch a national study to learn about the impact of Parkinson’s disease in Canada. Little did they know, this national study would grow to become Canada’s first-ever study of not only Parkinson’s disease, but 13 other neurological conditions as well. Nor could they have imagined that the $15 million study would be funded entirely by the Government of Canada, with full support from the federal health portfolio (Health Canada, Public Health Agency of Canada, Canadian Institutes of Health Research).

Fast forward to 2011,
• the National Population Study of Neurological Conditions is well underway, with Parkinson’s included in 17 of 18 research projects;
• neurological conditions have been added to the federal surveillance system for chronic disease;
• the first-ever Parliamentary Subcommittee on Neurological Diseases heard 30 hours of testimony (including 4 hours of Parkinson’s-specific testimony);
• a framework for a national brain strategy has been tabled with federal policy makers;
• and, as evidence of how much attention neurological conditions have garnered in recent years, policy related to brain health was included in every national party platform during the recent federal election.

“The progress is staggering,” says Joyce Gordon, CEO of Parkinson Society Canada and Chair of Neurological Health Charities Canada (NHCC). “Credit goes to volunteers and staff within the 26 member organizations of the NHCC. Everyone has rolled up their sleeves and pitched in with commitment and a real sense of partnership.”

Looking ahead, Parkinson Society Canada is committed to building on our positive and productive working relationship with the Government of Canada. During the election, the Conservative Party of Canada made two important commitments to our community:
• to invest up to $100 million in neuroscience research; and
• to implement a new Family Caregiver Tax Benefit.

These two promises begin to address key elements of the proposed national brain strategy and Parkinson Society Canada will work with members of Canada’s 41st Parliament and federal policy makers to realize these commitments as soon as possible. This is an excellent start but much more is needed to improve the quality of life of more than 100,000 Canadians with Parkinson’s, and more than 5 million Canadians with neurological conditions.

Your support for this work is critical. To learn more about Parkinson Society Canada’s advocacy program, please visit the Advocacy Centre at

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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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