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Rossy Progressive Supranuclear Palsy Centre

 

Rossy PSP Centre Toronto Canada

 

 

The Rossy PSP Centre, Toronto Ontario

The Rossy PSP Centre at UHN: Transforming Lives through Comprehensive Care

The Rossy PSP Centre at the University Health Network (UHN) is at the forefront of providing exceptional care and support to patients suffering from progressive supranuclear palsy (PSP), a rare and devastating neurodegenerative disorder. With its multidisciplinary approach and groundbreaking research initiatives, the center is dedicated to improving the lives of individuals affected by PSP and their families.

PSP is a complex condition that affects movement, balance, cognition, and speech. It presents unique challenges that require specialized care. The Rossy PSP Centre is a beacon of hope for patients and their loved ones, offering a comprehensive range of services tailored to address the diverse needs of those impacted by PSP.

Thanks to generous donations, the Rossy PSP Centre can provide a range of vital services. These funds support cutting-edge research, enabling the center's expert team of clinicians and scientists to unravel the complexities of PSP, search for effective treatments, and ultimately find a cure. Donations also contribute to the ongoing development of innovative programs that enhance patients' quality of life, from rehabilitative therapies to psychological support and caregiver supports.

FAQ's by The Rossy PSP Centre

Why am I referred to the Rossy PSP Centre?

As a patient diagnosed with PSP or a related disorder, we believe is important that you receive specialized care. As part of our program you are moving knowledge forward and contributing to advancements in the field.

What happens at my appointment?

Our team will assess the state of your condition and conduct other specific tests such as a memory test or collect bio-samples such as a blood test. These assessments will provide a full clinical picture to help the doctors understand you and your condition better.

When and where will my appointments be?

Your appointments will be at the Movement Disorders Clinic at Toronto Western Hospital, scheduled for every 6 months. Virtual/remote appointments via Ontario Telehealth Network may be an option.

Is there anything extra that I must do?

There is nothing extra that you must do as a patient of our program. However, if there are questionnaires or tests you are asked to complete ahead of time, it is recommended that you do so before your appointment so that we are able to provide you with the proper care.

PSP Appointments: Please call Tel: (416) 603 6422

Questions about the program: Please call Puja Bhakta Tel: (416) 603-5800 ext. 5234

Email: rossypsp@uhn.ca

Mailing Address:

Toronto Western Hospital - Rossy Progressive Supranuclear Palsy Centre

399 Bathurst St. Movement Disorders Clinic, McLaughlin Wing 7th floor

Toronto, ON M5T 2S8

Tel: (416) 603 6422

Fax: (416) 603 5004

 

Tracing the paths to disease

The study, led by Dr. Gabor Kovacs of UHN’s Krembil Research Institute, maps the regions of the brain where pathological tau proteins arise in individuals with various sub-types of progressive supranuclear palsy. These sub-types include Richardson syndrome and Parkinsonism. 

Progressive supranuclear palsy (PSP) is a rare brain disorder with no known cure. As it worsens, the disease can cause serious problems with walking, balance, eye movements, swallowing, as well as changes in mood and thinking.

A recent large-scale international study led by Krembil Senior Scientist Dr. Gabor Kovacs identified the underlying stages of disease, which are key to better managing symptoms and developing targets for therapy. 

"This is the first study that attempts to define stages of PSP," says Dr. Kovacs. "By knowing where to look, we can better monitor patients and better predict prognoses."

The research project included international collaborators, including Dr. John Trojanowski from the University of Pennsylvania and Dr. Günter Höglinger from the German Centre for Neurodegenerative Disease. Together, the research team evaluated more than 200 brains affected by PSP and defined six stages of disease progression.

An abnormal protein, known as the pathological tau protein, is seen in the brains of individuals with PSP. The researchers traced how this protein spreads through the brain in distinct paths for each clinical sub-type. The findings showed that irrespective of the disease's clinical sub-type the first stage of PSP develops in the same brain region.

"Knowing where the pathological accumulation of the tau protein starts in the brain, means that we can now focus on researching this area specifically," says Dr. Kovacs. "Because this region comprises unique cell populations with different receptors or metabolic activity — we will get a better idea of which brain cells to target with therapy in the early stages of PSP."

The study was also able to show that the major difference between clinical sub-types of PSP relates not only to the involvement of nerve cells but also to the supporting cells called astroglia and oligodendroglia.

"We've provided a conceptual framework for the spread of tau to understand the mechanisms of how pathological tau jumps from one neuron to the next neuron and how the supporting tissue plays a role," says Dr. Kovacs. "With this understanding, we hope to provide a foundation for basic research to develop blocking agents or therapies to stop the spread of the tau protein."

Dr. Kovacs is Co-Director of the Rossy Program for PSP research, which is led by Dr. Anthony Lang, Director of the Movement Disorders Clinic at Toronto Western Hospital. Funding for the study was obtained by Dr. Lang. Under the directorship of Dr. Lang and a team of world-leading researchers in movement disorders, it is the only program in Canada dedicated to PSP research and care. The research was also supported by Open Access funding from Projekt DEAL, the National Institutes of Health, the Penn Institute on Aging, Fundació Marató de TV3, the Rossy Foundation, the Edmond J. Safra Foundation, the Bishop Dr. Karl Golser Foundation, the German Research Foundation (DFG), the German Federal Ministry of Education and Research (BMBF), the NOMIS Foundation and the Toronto General & Western Hospital Foundation.

Read more about the study. 

About Us: 

The Coleen Cunningham Foundation serves individuals and families dealing with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) and Corticobasal Degeneration (CBD).

Mission

The Coleen Cunningham Foundation (CCF) is dedicated to honoring the legacy of Coleen Cunningham by providing comprehensive support to individuals and families affected by Atypical Parkinsonism. Our mission is to improve the quality of life for those impacted by these rare neurological disorders through compassionate care, advocacy, and education. We strive to foster a supportive community, offer respite and hospice care, and advance the understanding and management of Atypical Parkinsonism.

Objectives

1. Provide Compassionate Respite and Hospice Care

  • Respite Vacations: Offer families affected by Atypical Parkinsonism the opportunity to create cherished memories through specially designed respite vacations.
  • Respite Hospice in the Caribbean: Establish a dedicated hospice facility in the Caribbean that provides comprehensive care and relaxation for families, ensuring a serene environment for both patients and caregivers.

2. Support and Empower Families and Caregivers

  • Support Groups: Facilitate regular support group meetings to provide emotional and practical support for caregivers, patients, and families.
  • Educational Resources: Develop and distribute educational materials to help families and caregivers understand and manage the complexities of Atypical Parkinsonism.
  • Advocacy: Advocate for the needs and rights of those affected by Atypical Parkinsonism at both the local and national levels.

3. Advance Medical Understanding and Management

  • Collaborative Research: Partner with medical institutions and researchers to support studies aimed at understanding Atypical Parkinsonism and developing effective treatments.
  • Medical Insights and Training: Provide healthcare professionals with the latest insights and training on Atypical Parkinsonism to improve patient care.

4. Promote Awareness and Education

  • Public Awareness Campaigns: Conduct campaigns to raise public awareness about Atypical Parkinsonism and the challenges faced by those affected.
  • Educational Events: Host seminars, webinars, and workshops to educate the public, healthcare professionals, and policymakers about Atypical Parkinsonism.

5. Foster a Supportive Community

  • Online Community Platform: Create and maintain an online platform where individuals and families can share experiences, find support, and access resources.
  • Engage with Stakeholders: Build partnerships with organizations, companies, and individuals dedicated to supporting neurological disorders to enhance our outreach and impact.

6. Expand Global Reach

  • International Collaboration: Work with international partners to share knowledge, resources, and best practices in the care and management of Atypical Parkinsonism.
  • Resource Distribution: Ensure that educational and support materials are accessible to a global audience, reaching as many affected individuals and families as possible.

Commitment to Excellence

At the Coleen Cunningham Foundation, we are committed to excellence in all our endeavors. We pledge to uphold the highest standards of care, compassion, and professionalism in our services, ensuring that every individual and family we support receives the best possible assistance and guidance.

Together, we can navigate the challenges of Atypical Parkinsonism, creating a brighter future for those affected by this condition.

No One Walks Alone!

Laura Louizos
Executive Director
Coleen Cunningham Foundation for
PSP Awareness