This was a very exciting year of change, growth and carving new paths.
Since the union of six Parkinson’s organizations in 2016 into one Parkinson Canada, we continue to take the bold steps needed to grow our capacity to reach more people with Parkinson’s, effectively and efficiently. This is more important than ever given that the number of people with Parkinson’s is growing. Each day more than 25 Canadians are diagnosed with Parkinson’s. And as a result there is increased demand for our services and resources through calls, email requests, website visitors, and attendees at events in communities like yours.
We are grateful to each of our generous donors who ensure that we can provide you and your loved ones support that you can use. And we are grateful when you share that information and resources with others, helping us expand our reach to include members of your health team.
We are growing as we continue to search for better treatments and a cure.
We announced the Canadian Open Parkinson Network (C-OPN), the first Parkinson-specific collaboration of this scope and scale for Canada. Researchers working across multiple sites and provinces will be able to accelerate discoveries leading to better treatments and a cure through shared data and samples that include a patient registry with comprehensive clinical information, a database with information from diagnostics (imaging tests, MRI, PET scans), and a biobank with patient biomaterials such as blood samples and DNA for genetic studies. The official launch of Phase One will occur in Spring 2020 for Parkinson Awareness Month.
C-OPN will build capacity and increase awareness among all levels of government, healthcare professionals, the research community, health charities and the general public. Together, Parkinson Canada and Brain Canada partnered to fund this first phase with a $2 million seed grant. This enabled the initial development and groundwork for a multi-site large-scale research network that is built on the foundation of the established and successful Quebec Parkinson Network (QPN). Watch for more updates in 2020.
Also this year, the second edition of the Canadian Guideline for Parkinson Disease launched to address gaps in care. More healthcare professionals—doctors, nurses, pharmacists and various therapists—now have access to these guidelines. This professional education will help in their daily practices and care delivery. When your care team understands and follows those specific recommendations set out in the guidelines, this helps to ensure that you and your loved ones receive the most appropriate care and treatment. At this time, over 80,000 print copies are in the hands of healthcare professionals and an additional 50,000 were downloaded, in just over 3 months since the resources became available.
We launched new programs.
In order to meet the growing demand for information, we update and create new educational content for healthcare providers, people with Parkinson’s, their families and care partners.
Our Act on Time™ program is a new initiative specifically created to help people living with Parkinson’s to better communicate with their healthcare teams, and to help alert health professionals to better understand the unique needs of people with Parkinson’s in emergency rooms, hospitals and long-term care facilities.
Another publication delivered in response to the need for resources to support care partners, Care Partnering: Managing Parkinson’s Disease Together, was distributed last summer and continues to fly off the shelf.
In September, Parkinson Canada joined The Parkinson’s Foundation in the US and the Movement Disorders Society in Vancouver, BC at the Allied Team Training for Parkinson’s™ (ATTP) event for health professionals. Interdisciplinary participants learned about the unique and complementary role of each discipline in their care team, while having real cases to evaluate and assess from early, middle and late stages of the disease. The focus was on how to support a person with Parkinson’s disease and the person’s care partners in self-management.
In October, ahead of the elections, the Parkinson’s community gathered in Ottawa, in partnership with the Davis Phinney Foundation, for the Victory Summit®—a day of information and inspiration. Featuring researchers, clinicians and physical therapists in the field of movement disorders, the event provides essential tools and resources that people with Parkinson’s can use to live well today.
Our online community continues to grow.
Parkinson Canada’s Knowledge Network offers webinars and podcasts with the latest updates on research, treatments and self-care. Don’t worry if you have missed past presentations—these videos are available for replay on our YouTube channel and podcasts can be accessed from SoundCloud. Consider subscribing to our YouTube channel and you’ll automatically receive updates as new content is added.
You are not alone on your Parkinson’s journey.
We are here for you, with help and hope. We advocate with you and on your behalf for issues that matter to you. We are grateful to each individual and organization that makes our mission possible through a donation. We are proud to work with other organizations and expert volunteers, making it possible for us to deliver credible services and resources to you and your family, and to your healthcare team. And we are located across Canada, so contact us at a location that’s convenient for you.
I would like to extend my heartfelt gratitude to you. It’s because of you, and our donors, partners, volunteers, researchers, healthcare professionals and staff—who each help those affected by Parkinson’s to live their best life possible.
I want to wish you and your family a wonderful holiday season and all the best for a joyous and healthy 2020.
Here’s to progress through growth in 2020.