CurePSP — The International PSP Foundation
Overview
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organizations_curepsp["CurePSP International PSP Foundation"]
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organizations_cureps_0["Mission"]
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organizations_cureps_1["Research Programs"]
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organizations_cureps_2["Grant Funding"]
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organizations_cureps_3["Research Centers of Excellence"]
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organizations_cureps_4["International Registry"]
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organizations_cureps_5["Biobanking Initiative"]
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CurePSP — The International PSP Foundation
Overview
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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.
Mission CurePSP's core mission encompasses:
Research Funding — Fund cutting-edge research into PSP causes, mechanisms, and treatmentsPatient Support — Provide information, resources, and support networks for PSP patients and familiesClinical Infrastructure — Build and maintain registries and clinical trial networksAwareness — Increase recognition of PSP among healthcare professionals and the publicProfessional Education — Train the next generation of neurologists and researchers
Research Programs
Grant Funding CurePSP funds research through multiple mechanisms:
Discovery Grants : Early-stage research exploring novel hypotheses about PSP mechanismsCareer Development Awards : Training the next generation of PSP researchersConsortium Grants : Multi-center collaborative projectsClinical Trial Grants : Supporting translation of discoveries into clinical trialsResearch Centers of Excellence CurePSP designates leading institutions as Research Centers of Excellence:
UCL Institute of Neurology (London, UK) — Brain bank and neuropathologyMayo Clinic Florida (Jacksonville, FL) — Clinical and genetic researchUniversity of Texas Southwestern (Dallas, TX) — Tau biology and therapeuticsUniversity of Pittsburgh — Clinical trials and biomarkersMass General Hospital (Boston, MA) — Clinical researchInternational Registry 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
Biobanking Initiative CurePSP coordinates brain donation and tissue banking:
Partnerships with brain banks worldwide
Standardized neuropathological assessment protocols
DNA and tissue sample distribution to researchers
Patient Support Programs
CurePSP provides comprehensive patient education:
Website : Educational materials about PSP symptoms, diagnosis, and managementHelpline : Staffed by experienced patient advocates webinars : Regular educational sessions for patients and familiesPrinted guides : Comprehensive guides for newly diagnosed patientsSupport Networks
Peer Support Program : Connections between patients and familiesSupport Groups : Local and virtual support meetingsFamily Days : Educational events for familiesCaregiver Resources : Tools and support for caregiversHealthcare Professional Education
Medical Training : Modules for neurologists and geriatriciansClinical Guidelines : Best practices for PSP diagnosis and careCME Programs : Continuing medical education creditsKey Leadership
Founders and Pioneers
Dr. John Steele (1934-2023) — Co-discoverer of PSP ( Steele-Richardson-Olszewski syndrome), founded CurePSPDr. Jerzy Olszewski — Co-discoverer of PSP syndrome (deceased)Dr. Jacqueline C. Steele — Co-founder and longtime volunteerBoard and Staff
CEO : Currently led by a professional staff including scientific and program directorsScientific Advisory Board : Leading PSP researchers guiding research prioritiesBoard of Directors : Patient representatives, family members, and scientific expertsFinancials and Impact
Funding CurePSP is funded through:
Individual donations and memorials
Corporate sponsorships
Foundation grants
Planned giving programs
Special events
Impact Metrics As of recent reports:
$50M+ invested in research over the organization's history50+ research grants funded annually3,000+ patients enrolled in the international registry1,000+ brain samples banked and distributedAffiliated National Organizations CurePSP serves as the international hub for national PSP organizations:
| Country | Organization | Relationship |
Clinical Trials and Therapeutic Pipeline CurePSP actively promotes clinical trial participation:
IONIS-HTTRx (Ionis/wave) — Antisense for PSPLOTUS (Lilly) — OGA inhibitor for PSPAbolurin (Roche) — Tau antibodyResearch Priorities for Therapy Development
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
Partnerships CurePSP partners with:
National Institutes of Health (NIH) — Funding and clinical trialsAlzheimer's Association — Shared research initiativesAmerican Academy of Neurology — Professional educationPharmaceutical companies — Trial design and recruitmentPatient advocacy organizations — Broader neurodegenerative communityCross-References
[PSP Association UK](/organizations/psp-uk)
[PSP Australia](/organizations/psp-australia)
[PSP Canada](/organizations/psp-canada)
[Patient Support](/organizations/support-organizations) — General support resources
[Clinical Trials](/clinical-trials) — Current PSP trials
References
[CurePSP Official Website](https://www.curepsp.org/)
[PSP International Registry](https://www.psp-registry.org/)
[CurePSP Annual Report 2024](https://www.curepsp.org/about/annual-reports/) Show full description