Advancing Hope for People Living with Progressive Supranuclear Palsy and Other Atypical Parkinsonian Conditions

Parkinson Canada is proud to announce an exciting new partnership with CurePSP, the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). This collaboration marks a significant step forward in addressing the unmet needs of Canadians living with PSP, a rare and complex neurological disorder often overshadowed by the more common Parkinson’s disease diagnosis.

The partnership is built on a shared commitment to raise awareness, expand educational resources and improve access to care for people with PSP across Canada. By joining forces, CurePSP and Parkinson Canada will leverage their combined expertise and resources to support research, develop new support services, and empower individuals and families affected by PSP.

“This new partnership responds to a growing recognition of the significant gap in knowledge and the need for new research projects specifically targeted to unique needs of people living with PSP,” said Ko Currie, Director of Research Programs and Partnerships at Parkinson Canada. “By working together, CurePSP and Parkinson Canada aim to accelerate progress, foster innovation, and ensure that people affected by PSP in Canada receive the care and attention they deserve.”

Introducing Two New Co-Funded Projects

As part of this collaboration, CurePSP and Parkinson Canada are co-funding two research projects from the 2025 CurePSP Collaborative Approaches to Resources, Education and Support (CARES) grant program. CurePSP CARES aims to assess unmet needs, improve access to innovative, person-centered care, foster collaboration among clinicians and researchers within the Centers of Care network, and accelerate new clinical solutions.

Funding for these projects was made possible in part by the Parkinson Canada SuperMom Walk/Run event that was started by Carlota Lee in Vancouver. “My journey with progressive supranuclear palsy (PSP), a Parkinson’s Plus disease, has reshaped nearly every aspect of my life, but it has also clarified what matters most to me and why I continue to give back. Giving back is no longer optional for me—it is essential. Contributing to something larger than myself reminds me that my life is still rich with purpose” said Carlota Lee.

Mapping Barriers to Diagnosis in Underserved Communities

Led by teams at the University of Alberta and the University of Toronto, this project uses a mixed-methods approach to identify barriers to — and facilitators of — timely diagnosis of PSP, corticobasal syndrome (CBS), and multiple system atrophy (MSA) in underserved regions across Canada. By gathering insights from patients, caregivers, and healthcare providers, the project aims to develop evidence-based recommendations and process maps that will streamline referral pathways and improve access to specialized care. The ultimate goal is to reduce delays, promote equity, and empower those most affected by these challenging conditions.

Virtual Wellness Program for Atypical Parkinsonism

A second project, led by teams at the University of British Columbia and the University of California San Diego, tests the effectiveness of an eight-week virtual wellness program for people living with PSP, CBS, and MSA. The program will focus on mobility, speech, and social connection, offering activities like chair yoga, vocal exercises, and support groups. By measuring changes in well-being, resilience, and caregiver burden, the study will provide valuable data to inform future programs and expand access to non-drug therapies for people with PSP across Canada.

Looking Ahead

“These initiatives represent just the beginning of what’s possible through collaboration,” said Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP. “Parkinson Canada and CurePSP are committed to ongoing partnership, regular review, and meaningful engagement with our community. Together, we hope to spark new research, improve care, and bring hope to Canadians living with PSP and related diseases and their families.”

For more information and updates, visit https://www.parkinson.ca/ and https://www.curepsp.org/.