By Yvon Trepanier,
Chair, National Advocacy Committee
First steps taken toward national research study
Over 3,000 people with or affected by neurological disorders responded to an online questionnaire, in February 2009, asking what types of information should be collected for a four-year national research study to uncover the incidence, prevalence, risk factors and impacts of neurological conditions across Canada. The study is spearheaded by Neurological Health Charities Canada (NHCC), a collective of organizations that represent people with chronic, often progressive, brain diseases, disorders and injuries in Canada. The federal government has committed $15 million to fund the project. Parkinson Society Canada plays a leadership role in the NHCC.
Tulips sent to Parliament Hill
For the April Parkinson’s Awareness Month, the National Advocacy Committee:
• sent fresh tulips to the Prime Minister and federal Minister of Health;
• had an Awareness Month announcement read in the House of Commons by Barrie MP Patrick Brown (download wmv), and read in the Senate by Senator Sharon Carstairs;
• mailed Research Highlights (pdf) to all MPs and Senators, along with a letter signed by PSC President & CEO Joyce Gordon and National Advocacy Committee Chair, Yvon Trepanier;
• sent an information page to all MPs for inclusion in their householder newsletters.
Tell us your experiences of genetic discrimination
PSC is participating in an initiative, led by the Huntington Society of Canada, to persuade the federal government to create legislation that will protect the privacy of individual genetic information and protect against discrimination based on genetic predisposition to disease. If you have had personal experience of either a breach of privacy of genetic information or genetic discrimination, contact us at firstname.lastname@example.org.
Meet us at the PSC Advocacy Café
Advocating for a better life for Canadians with Parkinson’s disease and their families is a community effort. We need your voice and support. You can join us at the PSC Advocacy Café to share information and ideas on how we can work together, or send an email to email@example.com.