Worldwide Resource Links

Tons of great resources and information all in one place!

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The first clinic in Canada, fully focused on the diagnosis and management of Progressive Supranuclear Palsy (PSP) and other similar conditions. The clinic is made up of a team of expert neurologists, specialist nurses, research coordinators and administrators. The team of experts uses the latest techniques in evidence-based medicine to help our patients. They combine tools such as comprehensive data collection, biospecimen and imaging analysis as well as longitudinal observation to better address the clinical and research needs of patients.

 

CurePSP is a USA 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). As a catalyst for new treatments and a cure, they establish important partnerships and fund critical research. Through their advocacy and support efforts, they enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP’s mission and all of their services.

 

PSPA

PSPA is the only UK charity dedicated to creating a better future for everyone affected by PSP & CBD. Their Goals are to enable people living with PSP & CBD and their families to live their best lives possible with high quality support and information. They strive to improve the quality of life of people living with PSP & CBD through research, education and awareness raising. 

 

Parkinson Canada

Since 1965, Parkinson Canada has worked to provide support services and education to people living with Parkinson’s disease including PSP/MSA/CBD, their families, and the health care professionals who treat them.

 

The Michael J. Fox Foundation in the USA is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's and Atypical Parkinsonism today.

 

The Krembil Brain Institute at Toronto Western Hospital (UHN) in Canada is home to​ one of the world’s largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine.

 

Fight Parkinson's in Australia offers national specialist support for individuals and families and can help with information on symptom management, services, health-related benefits and entitlements and everyday living. As families and people affected by PSP often come into contact with health professionals with no or limited knowledge of their condition, they can also provide specific information for, and advocate on your behalf, to medical and healthcare professionals. 

NORDIf you live with a rare disease, or love someone who does, NORD is here to help you. For more than 30 years, we have been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments.

 

NINDS

PSP is one of the diseases being studied as part of the NINDS Parkinson's Disease Biomarkers Program, which aims to discover ways to identify individuals at risk for developing Parkinson's and related disorders, and to track disease progression.

 

Mayo Clinic

Every year, more than a million people come to Mayo Clinic for care. Our highly specialized experts are deeply experienced in treating rare and complex conditions.

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

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