CurePSP (formerly the Society for Progressive Supranuclear Palsy) is the premier international nonprofit organization dedicated to funding research, providing patient support, and raising awareness for Progressive Supranuclear Palsy (PSP) and related neurodegenerative disorders. Founded in 1990 by Dr. John Steele and a small group of patients and families, CurePSP has become the driving force behind global PSP research.
CurePSP's core mission encompasses:
- Research Funding — Fund cutting-edge research into PSP causes, mechanisms, and treatments
- Patient Support — Provide information, resources, and support networks for PSP patients and families
- Clinical Infrastructure — Build and maintain registries and clinical trial networks
- Awareness — Increase recognition of PSP among healthcare professionals and the public
- Professional Education — Train the next generation of neurologists and researchers
CurePSP funds research through multiple mechanisms:
- Discovery Grants: Early-stage research exploring novel hypotheses about PSP mechanisms
- Career Development Awards: Training the next generation of PSP researchers
- Consortium Grants: Multi-center collaborative projects
- Clinical Trial Grants: Supporting translation of discoveries into clinical trials
CurePSP designates leading institutions as Research Centers of Excellence:
- UCL Institute of Neurology (London, UK) — Brain bank and neuropathology
- Mayo Clinic Florida (Jacksonville, FL) — Clinical and genetic research
- University of Texas Southwestern (Dallas, TX) — Tau biology and therapeutics
- University of Pittsburgh — Clinical trials and biomarkers
- Mass General Hospital (Boston, MA) — Clinical research
CurePSP maintains the PSP International Registry (PSP-IR), a global patient registry that:
- Enrolls PSP patients worldwide for clinical research participation
- Collects standardized clinical and genetic data
- Facilitates clinical trial recruitment
- Enables natural history studies
CurePSP coordinates brain donation and tissue banking:
- Partnerships with brain banks worldwide
- Standardized neuropathological assessment protocols
- DNA and tissue sample distribution to researchers
CurePSP provides comprehensive patient education:
- Website: Educational materials about PSP symptoms, diagnosis, and management
- Helpline: Staffed by experienced patient advocates
- ** webinars**: Regular educational sessions for patients and families
- Printed guides: Comprehensive guides for newly diagnosed patients
- Peer Support Program: Connections between patients and families
- Support Groups: Local and virtual support meetings
- Family Days: Educational events for families
- Caregiver Resources: Tools and support for caregivers
- Medical Training: Modules for neurologists and geriatricians
- Clinical Guidelines: Best practices for PSP diagnosis and care
- CME Programs: Continuing medical education credits
¶ Founders and Pioneers
- Dr. John Steele (1934-2023) — Co-discoverer of PSP ( Steele-Richardson-Olszewski syndrome), founded CurePSP
- Dr. Jerzy Olszewski — Co-discoverer of PSP syndrome (deceased)
- Dr. Jacqueline C. Steele — Co-founder and longtime volunteer
¶ Board and Staff
- CEO: Currently led by a professional staff including scientific and program directors
- Scientific Advisory Board: Leading PSP researchers guiding research priorities
- Board of Directors: Patient representatives, family members, and scientific experts
¶ Financials and Impact
CurePSP is funded through:
- Individual donations and memorials
- Corporate sponsorships
- Foundation grants
- Planned giving programs
- Special events
As of recent reports:
- $50M+ invested in research over the organization's history
- 50+ research grants funded annually
- 3,000+ patients enrolled in the international registry
- 1,000+ brain samples banked and distributed
CurePSP serves as the international hub for national PSP organizations:
| Country |
Organization |
Relationship |
| United Kingdom |
PSP Association UK |
Affiliate |
| Australia |
PSP Australia |
Affiliate |
| Canada |
PSP Canada |
Affiliate |
| Japan |
PSP Japan |
Affiliate |
| Italy |
Associazione PSP Italiana |
Affiliate |
| Netherlands |
PSP Netherlands |
Affiliate |
| Scandinavia |
PSP Scandinavia |
Affiliate |
| Spain |
PSP España |
Affiliate |
¶ Clinical Trials and Therapeutic Pipeline
CurePSP actively promotes clinical trial participation:
- IONIS-HTTRx (Ionis/wave) — Antisense for PSP
- LOTUS (Lilly) — OGA inhibitor for PSP
- Abolurin (Roche) — Tau antibody
-
Disease-Modifying Therapies
- Tau aggregation inhibitors
- Tau-directed immunotherapy
- OGA inhibitors
- Gene therapy approaches
-
Symptomatic Therapies
- Motor症状管理
- Cognitive interventions
- Sleep disorder treatments
-
Biomarker Development
- Blood-based biomarkers
- Imaging biomarkers
- Digital biomarkers
CurePSP partners with:
- National Institutes of Health (NIH) — Funding and clinical trials
- Alzheimer's Association — Shared research initiatives
- American Academy of Neurology — Professional education
- Pharmaceutical companies — Trial design and recruitment
- Patient advocacy organizations — Broader neurodegenerative community