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Victoria Epilepsy & Parkinson's Centre

Parkinson's Blog

Acknowledgment to our membership

 

Here at Headway Victoria Epilepsy and Parkinson’s Centre, we continue to include input provided by our Parkinson’s advisory committee within our service delivery plan and we are so thankful for such an active membership. Our members are passionate leaders in their community. They are advocates, and key players in promoting change in service delivery and research.

For example, Jillian Carson, one of our Parkinson’s advisory committee members,  participated in the McGill Neurological Institute and the McGill University Integrated Program in Neuroscience conference retreat on September 20th, 2013. Jillian provided a presentation to neuroscientists called Patient Talks. The presentation included patient views and perspectives on Parkinson’s treatment and research. As an advocate, professional and person’s with Parkinson’s (PwP), Jillian brought with her the voices of thousands of individuals from around the world.

As Jillian states, “we need to push things faster; and the conference is an example of an amazing opportunity to share with researchers the views and priorities for individuals with Parkinson’s. Because, as you know it has been 50 years of sinemet being the gold standard for treatment....We need to have better quality of life now. The side effects push us into a corner with not much to offer but end stage PD. At age 53, I don’t plan to ever get to end stage. Parkinson’s needs to become more of a priority in all facets of care, and globally.”

Jillian is also an ambassador for the Parkinson’s Movement (PM).  With her infectious passion and enthusiasm, Jillian continues to rally the voices of PwP to ensure, “we the PwP have influence on not just our own lives but on the Parkinson’s agenda, i.e. issues about progress in care and cure, and all points in between. Her message will continue to express the importance of patient engagement, stating, “our opinions need to be properly represented so that no decisions about Parkinson’s is made without informed input from the people who live with PD day to day. A huge challenge yes, but there is a huge following from the best advocates around the world. I will be representing Canada in bringing the PM here.”

We would like to congratulate Jilllian on her video submission, which was recognized at the World Parkinson's Congress. For those of you who weren't in attendance Jillian's video submission can be viewed here.

 

Do you have feedback and input to provide to our agency regarding our service delivery? Please do not hesitate to contact our agency, by phone, email or by stopping by. Our doors are always open to welcome new and familiar faces.

Posted by Sandra Graham, Community Awareness Coordinator on 24th Oct 2013 2:04pm