The only thing certain in life is change.
We’ve been changing. 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.
Parkinson Canada is the nationwide voice and source of credible information for individuals like you, your family members and your healthcare team. 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, including members of your health team.
Throughout the year, I look forward to meeting many of you who attend events that build awareness of Parkinson’s and allow us to connect in person, and online, with you, your families and your healthcare teams. Your energy and passion for our work and your thirst for knowledge are inspirational. We rely on input and participation from individuals like you to shape our priorities for programs and services. Through your responses via a recent national survey, you have told us how research is a top priority to you as donors and as people affected by Parkinson’s.
We are expanding the scope of Parkinson Canada’s Research Program to make an even bigger difference in the Parkinson’s community.
We recently announced funding for the Canadian Open Parkinson Network (C-OPN), the first Parkinson’s-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 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 are funding this first phase with a $2 million grant, intended to launch the initial development and maintenance of 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 2019.
In the coming year, the second edition of the Canadian Guidelines on Parkinson’s will be launched to address gaps in care. More healthcare professionals—doctors, nurses, pharmacists and various therapists—will have access to these guidelines, and additional professional education. 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.
We will also launch Act on Time™—a new initiative specifically created to help people living with Parkinson’s better communicate with their healthcare teams, and help alert health professionals to better understand the unique needs of people with Parkinson’s in health settings such as emergency rooms, hospitals and long-term care facilities.
Another publication we are working on is in response to the need for resources to support care partners. The much-anticipated Care Partnering: Managing Parkinson’s Disease Together is being developed and will be available in 2019.
This past April, Parkinson Canada joined The Parkinson’s Foundation and the Movement Disorders Society in Vancouver, BC at the Allied Team Training for Parkinson’s™(ATTP) 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.
Also in April, Parkinson Canada, in partnership with the Davis Phinney Foundation, other organizations and the Parkinson’s community gathered in Winnipeg, Manitoba for the Victory Summit® for 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. Save the date for the next Canadian stop on the tour: Saturday, October 5, 2019, at the Ottawa Conference and Event Centre.
We always look forward to hearing from you. Connect with us on the telephone, in person, out in the community and online. Simply put, we share a unity of purpose to expand our reach and increase our effectiveness in all that we do. That’s our commitment to you.
Above all, we know that for you and others, a cure can’t wait.
I want to wish you and your family a wonderful holiday season and all the best for a joyous and healthy 2019.
I would also like to extend my heartfelt gratitude to our donors, partners, volunteers, researchers, healthcare life professionals and staff—who all help those affected by Parkinson’s to live their best possible.
Here’s to progress through change in 2019.
Joyce Gordon, CEO