CurePSP - Foundation for Progressive Supranuclear Palsy
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organization721 wordssynced 2026-04-02
CurePSP
Overview
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CUREPSP["CurePSP"]
RESEARCH["Research"]
CUREPSP -->|"funds"| RESEARCH
style CUREPSP fill:#4fc3f7,stroke:#333,color:#000
style RESEARCH fill:#81c784,stroke:#333,color:#000
[CurePSP](/investment/progressive_supranuclear_palsy) (formerly known as the PSP Association) is the premier nonprofit organization dedicated to advancing research, patient care, and public awareness for [progressive supranuclear palsy (PSP)](/diseases/progressive-supranuclear-palsy), [corticobasal degeneration (CBD)](/diseases/corticobasal-degeneration), and related 4R-tauopathies. Founded to address the needs of patients and families affected by these rare but devastating neurodegenerative disorders, CurePSP has become the leading voice for the PSP and CBD community worldwide.
History and Evolution
Founding
CurePSP was established as the PSP Association in the United Kingdom, founded by families affected by PSP who recognized the need for a dedicated organization to advance research and support patients. The organization has since expanded its scope to become a global force in tauopathy research.
Name Evolution
PSP Association: Original founding name
CurePSP: Rebranded name reflecting expanded mission beyond PSP to include CBD and related disorders
...
CurePSP
Overview
Mermaid diagram (expand to render)
[CurePSP](/investment/progressive_supranuclear_palsy) (formerly known as the PSP Association) is the premier nonprofit organization dedicated to advancing research, patient care, and public awareness for [progressive supranuclear palsy (PSP)](/diseases/progressive-supranuclear-palsy), [corticobasal degeneration (CBD)](/diseases/corticobasal-degeneration), and related 4R-tauopathies. Founded to address the needs of patients and families affected by these rare but devastating neurodegenerative disorders, CurePSP has become the leading voice for the PSP and CBD community worldwide.
History and Evolution
Founding
CurePSP was established as the PSP Association in the United Kingdom, founded by families affected by PSP who recognized the need for a dedicated organization to advance research and support patients. The organization has since expanded its scope to become a global force in tauopathy research.
Name Evolution
PSP Association: Original founding name
CurePSP: Rebranded name reflecting expanded mission beyond PSP to include CBD and related disorders
Milestones
| Year | Milestone | |------|-----------| | 1995 | PSP Association founded in UK | | 2007 | Expansion to international research collaboration | | 2015 | rebranding to CurePSP | | 2020 | International patient registry launched | | 2023 | Global network of affiliate organizations |
Mission and Programs
Core Mission
CurePSP's mission encompasses:
Research Funding: Financial support for basic and clinical research into PSP, CBD, and related disorders
Patient Registry: Comprehensive database connecting patients with research opportunities
Education: Healthcare provider training and patient/family education programs
Advocacy: Policy engagement to advance research funding and patient care
Support Services: Direct support for patients and families navigating PSP and CBD
Research Programs
Grant Funding
CurePSP provides competitive research grants through its scientific review process:
| Program | Focus Area | Typical Award | |---------|------------|---------------| | Discovery Grants | Novel hypotheses, pilot data | $50,000-$100,000 | | Clinical Awards | Patient-oriented research | $75,000-$150,000 | | Postdoctoral Fellowships | Early career researchers | $50,000/year | | Center of Excellence | Multi-investigator teams | $250,000+ |
Research Priorities
Biomarker discovery and validation
Genetic risk factors and modifiers
Disease mechanisms and therapeutic targets
Clinical trial design and endpoint development
Quality of life interventions
Patient Registry
The [CurePSP International Patient Registry](/clinical-trials/curepsp-genetics-program) represents a major initiative to accelerate research:
Trial Matching: Connecting patients with clinical trials
Global Network
International Affiliates
CurePSP coordinates with partner organizations worldwide:
| Region | Organization | |--------|---------------| | United States | CurePSP USA | | United Kingdom | PSP Association UK | | Canada | PSP Canada | | Australia | PSP & CBD Foundation Australia | | Europe | PSP Europe Network |
Academic Partnerships
CurePSP works with leading research centers:
[University College London](/institutions/university-college-london) - Institute of Neurology](/institutions)
[University of Pennsylvania](/institutions/university-of-pennsylvania) - Penn FTD Center](/institutions)
[Mayo Clinic](/institutions/mayo-clinic) - Movement Disorders](/institutions)
[University of Toronto](/institutions/university-of-toronto) - Tanz Centre
Leadership and Governance
Board of Directors
CurePSP is governed by a board including:
Patient and family representatives
Scientific advisors
Healthcare professionals
Business and community leaders
Scientific Advisory Board
Leading researchers in tauopathy biology and clinical care guide CurePSP's research strategy:
Dr. Lawrence Golbe (Rutgers)
Dr. Alexander Pantelyat (Johns Hopkins)
Dr. Günter Höglinger (Munich)
Dr. Irene Litvan (San Diego)
Key Initiatives
CurePSP Conferences
Annual scientific and family conferences bring together:
Researchers presenting latest findings
Patients and families learning about advances
Healthcare providers receiving training
Networking opportunities
Awareness Campaigns
PSP Awareness Month (January)
CBD Education initiatives
Healthcare provider training programs
Advocacy
CurePSP advocates for:
Increased NIH and foundation research funding
Orphan drug development incentives
Access to experimental therapies
Caregiver support policies
Financial Information
Funding Sources
Individual donations and bequests
Corporate sponsorships
Foundation grants
Event fundraising
Research Investment
CurePSP invests substantial resources in research: