National Study of Neurological Conditions Gets Underway

It is with great excitement that we announce that the first-ever national study of neurological conditions in Canada is now underway.

Parkinson Society Canada (PSC) has played a lead role in advocating for this study which aims to improve our understanding of the experience and impact of neurological conditions, like Parkinson’s, so that policy makers can make more appropriate program and policy investments. This represents a tremendous opportunity to effect significant and meaningful change for Canadians with Parkinson’s.

In addition to determining incidence and prevalence, the study will have:

  • one team of researchers investigating health and community systems to identify gaps and recommend programs and tools to improve the system of care and support;
  • another team exploring the impact of living with a neurological condition on individuals, families and society; and
  • a third team focusing on prevention, by working to better understand risk factors or the elements that contribute to the development of specific conditions and to their progression.

Rooted in the input received from over 3,000 stakeholders in early 2009, the study is jointly led by the Public Health Agency of Canada and Neurological Health Charities Canada, of which PSC is a founding member.

The study concludes in early 2013, with a report to the Minister of Health. The results will be used to improve the quality of life for Canadians with neurological conditions and their families. A continued participant in this project, PSC will provide regular updates to keep you informed.


W5 Program on Parkinson’s disease and Compulsive Behaviours

CTV’s W5 program is looking for people with Parkinson’s and care partners who are willing to share their personal stories about how compulsive behaviour, such as gambling, excessive shopping, eating, and hypersexuality, due to Parkinson’s treatment, has affected their lives. Confidentiality and privacy will be protected. If you are interested in sharing your story, please contact Barbara Snelgrove at for more information.


Message from the editor

Welcome to the latest edition of E Parkinson Post!

With Parkinson Society Canada poised to look back on almost 45 years of history (2010 will mark our 45th anniversary), we have decided in this issue to highlight some of the things that make Parkinson Society Canada uniquely yours.

We focus on how people with Parkinson’s, their families, volunteers, researchers and clinicians have come together to create a supportive community across the country and how Parkinson Society Canada has become the national organization Canadians with Parkinson’s look to for support, education, research and advocacy.

You will hear from a person with Parkinson’s and two caregivers who can attest to the value of the help and support they receive from Parkinson Society Canada and its regional partners.

We provide a look at our national research program and bring you up to date on the achievements of some of our previously and currently-funded researchers.

There is also an overview of our advocacy efforts on your behalf and links to Parkinson Society Canada’s latest Position Statements which are posted on the website.

Comments, questions and story ideas are always welcome. You can send them to

We hope you enjoy this issue.

Marjie Zacks


Parkinson Society Canada – Your Society

Canada’s leading organization for people with Parkinson’s

Whether you live with Parkinson’s, are a family member, friend, donor or volunteer, you have helped make Parkinson Society Canada our country’s only national full service Parkinson organization.

During the past 44 years, people like you, coast to coast, have established 12 regional partner Societies, 235 Support Groups and Chapters who want to make a better life for people living with Parkinson’s through support services, education, advocacy and research.

With the support and funding of many like you, Parkinson Society Canada and its 12 regional partners, are able to provide educational workshops, conferences, a 1-800 national information and referral centre, bilingual print materials and supportive counselling. Our Advocacy initiatives are helping to change policy at all levels of government and are helping identify new voices to speak out on behalf of people living with Parkinson’s.

Our proud tradition of funding Canadian-based research has made us the largest private sector funder of Parkinson’s research in the country and last year, the national research program invested $1.12 million in funding innovative pilot projects, clinical fellowships and studentships for talented young researchers to ensure that Canada continues to engage top scientists in the study of Parkinson’s.

Our initiatives complement the work by other Parkinson organizations such as the Parkinson Research Consortium in Ottawa, Pacific Parkinson’s Research Institute in BC, The Brain Repair Centre in Halifax and the American-based Michael J. Fox Foundation.

Monies raised by PS in Canada remain in Canada and that proud tradition of support, advocacy, education and research in Canada continues as we head toward our 45th anniversary in 2010.

This year’s SuperWalk raised a record $2.46 million so thank you to all those who came out and walked, ran and jogged and to those who supported them. You can feel proud of the role you have played personally in creating a better life and brighter future for Canadians living with Parkinson’s today – a world without Parkinson’s tomorrow. Check out the new SuperWalk brand for 2010 at

Our Mission and Vision


Parkinson Society Canada is the national voice of Canadians living with Parkinson’s. Our purpose is to ease the burden and find a cure through advocacy, education, research and support services.


A better life with a brighter future for Canadians living with Parkinson’s today. A world without Parkinson’s tomorrow.


People with Parkinson’s first

  • Those we serve are our first priority in all decisions.


  • Work together to achieve our Mission and encourage all voices to be heard.


  • Conduct all business in a manner that demonstrates empathy and respect for those living with Parkinson’s.


  • Always seek innovative ways to reach our mission.


  • Conduct business in a manner that meets the most rigorous scrutiny and practices accountability.


  • We enable Canadians living with Parkinson’s to take action so that they may live fully in their communities as vibrant participants in all that life has to offer.