Parkinson Canada Backgrounder
Parkinson Canada is the national voice of Canadians living with Parkinson’s disease. Our vision is a better life today for people living with Parkinson’s; a world without Parkinson’s tomorrow.
From diagnosis to discovery, we guide the way for Canadians to live well with Parkinson’s disease throughresearch, advocacy and support. Whether you are an individualliving with Parkinson’s, a health care professional who treats them, or a family caregiver, we offer programs and servicesin communities coast to coast to coast, in person, by telephone and online. The Parkinson Canada Research Program funds innovative research to search for better treatments and a cure. Working with all levels of governments, ouradvocacyinitiatives focus on those issues of the greatest importance to the Parkinson’s community.
Parkinson Canada is accredited under the Imagine Canada Standards Program. Parkinson Canada fulfils its mission through the generosity of donors.
Research
· The Parkinson Canada Research Program supports novel research ideas, builds research capacity and grows specialists to provide quality care for people with Parkinson’s.
· By funding advanced clinical training fellowships, Parkinson Canada is helping to grow the number of specialists to ensure high quality of care for people with Parkinson’s.
· Parkinson Canada Research Program has funded 528 research awards, fellowships and grants, totaling more than $27 million, since 1981.
· The program has led to many publications including the first published study that demonstrated the neuroprotective role of Omega-3 fatty acids against Parkinson's.
Education
· Parkinson Canada regularly holds in-person sessions as well as webinars to educate the public and health care professionals on the latest knowledge on Parkinson’s disease and other Parkinsonisms, including multiple system atrophy (MSA) and progressive supranuclear palsy (PSP).
· Resources, learning opportunities and the Canadian Guidelines on Parkinson’s Disease for health care professionals can be found at www.ParkinsonClinicalGuidelines.ca.
· Understanding the non-motor symptoms helps improve quality of life for living individuals with Parkinson’s. With funding from the research program, Dr. Ron Postuma developed two tools to help people with Parkinson’s and their physicians identify and manage non-motor symptoms, such as hallucinations, REM sleep behaviour disorder, constipation and several other symptoms that were not in the past generally associated with Parkinson's disease.
Support
· Individuals can access Parkinson Canada’s toll-free Information and Referral Centre from anywhere in Canada.
· Each person’s unique circumstances and concerns are addressed in a timely and confidential manner by trained, knowledgeable staff. Requests are handled with discretion and compassion.
· Information resources are available in English and French online at www.parkinson.ca and in print by calling 1-800-565-3000. Certain information sheets are available in other languages: Chinese, German, Italian, Punjabi, and Spanish.
· People living with Parkinson’s can access local support and education. An interactive map accessible at www.parkinson.ca helps individuals connect with a variety of programs and support groups, to learn about Parkinson’s from others with similar experiences, as well as experts.
Advocacy
· Parkinson Canada actively advocates on a range of issues that affect the Parkinson’s community. Key advocacy priorities for 2017 include:
· Timely access to affordable and effective therapies, diagnostics and health services
· Caregiver Support: To help caregivers maintain their own physical and mental well-being
· Income Security: To protect people affected by Parkinson’s disease from poverty
· A Pan-Canadian Brain Strategy
· Genetic Fairness Protection to protect Canadians affected by a genetic condition including Parkinson’s disease, from genetic discrimination by employers and the insurance industry
· Accelerated and targeted investment in neuroscience and Parkinson’s research.
· Mobilizing Ambassadors to engage with all levels of government.
Partnerships
Parkinson Canada participates in numerous coalitions and partnerships to effectively fulfil its mission.
· Parkinson Canada is a founding member of Neurological Health Charities Canada (NHCC), whose primary aim is to seek a national brain strategy. In partnership with the Public Health Agency of Canada, a national epidemiological study of neurological disease was recently published.
· Parkinson Canada cooperates with a vast range of provincial or locally based organizations, whenever it advances the cause of the Parkinson’s community.
· Parkinson Canada is a member of the Best Medicines Coalition, Canadian Caregiver Coalition, Canadian Coalition for Genetic Fairness, Health Charities Coalition of Canada, Neurological Health Charities Canada and the World Parkinson Coalition.
Call 1-800-565-3000 or visit www.parkinson.ca to donate, get information and find programs and services available near you.
Updated March 2017