Curepsp Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
TO RAISE AWARENESS, BUILD COMMUNITY, IMPROVE CARE AND FIND A CURE FOR PSP, CBD AND MSA.
- Income
- $7.9 million
- Spending
- $5.9 million
- Spent on programs
- 81%
- Reserves
- 14.5 months of spending
- Largest source of income
- donations and private grants, 95%
- Employees
- 17
- Volunteers
- 350
- Highest pay
- $290,496, exe dir and chief science officer
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 100 out of 100. Higher than 83% of charities in its peer group (diseases, $1m to $10m).
Reserves
35 of 35Spendable reserves would cover 14.5 months of spending.
Debt
20 of 20It owes 10% of what it owns.
Living within its means
15 of 15Income exceeded spending by 26% of income.
Income trend
15 of 15Income rose 54% on the year before.
Spending floor
15 of 1581% of spending went to programs and raising each dollar of donations cost 7 cents.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 85 out of 100. Higher than 33% of charities in its peer group (diseases, $1m to $10m).
Independent board
25 of 2514 of 14 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
0 of 8Reports no written whistleblower policy.
Record keeping policy
0 of 7Reports no written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $2.3 million spent. CUREPSP SUPPORTS SCIENTIFIC RESEARCH AIMED AT DEVELOPING NEW TREATMENTS AND ULTIMATELY A CURE FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) AND CORTICOBASAL DEGENERATION (CBD), BOTH PRIMARY TAUOPATHIES. THE ORGANIZATION FUNDS AND FACILITATES RESEARCH PROJECTS THAT ADVANCE UNDERSTANDING OF THESE DISEASES WHILE ALSO CONTRIBUTING TO BROADER SCIENTIFIC KNOWLEDGE RELEVANT TO OTHER NEURODEGENERATIVE CONDITIONS, INCLUDING ALZHEIMER'S DISEASE, PICK'S DISEASE, ARGYROPHILIC GRAIN DISEASE, CHRONIC TRAUMATIC ENCEPHALOPATHY, AND CERTAIN FORMS OF FAMILIAL FRONTOTEMPORAL DEMENTIA.CONTINUED ON SCHEDULE OCUREPSP'S FUNDING AND PARTNERSHIPS ARE STRATEGICALLY FOCUSED ON ADVANCING RESEARCH IN SEVERAL KEY AREAS: (A) UNDERSTANDING THE CAUSES AND RISK FACTORS OF NEURODEGENERATION, (B) DISCOVERING AND VALIDATING ACTIONABLE BIOMARKERS AND CLINICAL TESTS TO ENHANCE DIAGNOSIS AND INCREASE THE LIKELIHOOD OF MORE EFFECTIVE CLINICAL TRIALS, (C) IDENTIFYING GENETIC VARIANTS LINKED TO THESE DISEASES, (D) DEVELOPING THERAPIES THAT COULD PREVENT, HALT, OR REVERSE THE BRAIN DAMAGE CAUSED BY THE PATHOLOGICAL ACCUMULATION OF PROTEINS, (E) ASSISTING PHARMACEUTICAL, BIOTECH, AND DIAGNOSTIC COMPANIES, AS WELL AS RESEARCH INSTITUTIONS, IN RECRUITING AND PROMOTING PARTICIPATION IN CLINICAL TRIALS, AND (F) DEVELOPING STRATEGIC ASSETS THAT DIRECTLY BENEFIT INDUSTRY PARTNERS, SUCH AS THE COMPREHENSIVE PATIENT JOURNEY STUDY, WHICH PROVIDES DETAILED INSIGHTS INTO THE REAL-WORLD EXPERIENCES OF PATIENTS TO INFORM AND OPTIMIZE CLINICAL TRIAL DESIGN. ADDITIONALLY, CUREPSP COLLABORATES WITH LEADING INSTITUTIONS LIKE THE MAYO CLINIC'S BRAIN BANK IN JACKSONVILLE, FLORIDA, TO PROVIDE ESSENTIAL BRAIN TISSUE SAMPLES TO RESEARCHERS WORLDWIDE, EXPANDING ACCESS TO THESE CRUCIAL BIOLOGICAL RESOURCES. CUREPSP'S PARTNERSHIPS ARE DESIGNED TO FAST-TRACK SHARED OBJECTIVES. IN THIS EFFORT, CUREPSP WORKS CLOSELY WITH AND CO-INVESTS IN PROGRAMS AND RESEARCH ALONGSIDE PROMINENT NONPROFIT ORGANIZATIONS AND FOUNDATIONS, SUCH AS THE ALZHEIMER'S ASSOCIATION, THE MICHAEL J. FOX FOUNDATION, THE PARKINSON'S FOUNDATION, AND THE RAINWATER CHARITABLE FOUNDATION, AS WELL AS PATIENT-LED ORGANIZATIONS LIKE MISSION MSA IN THE UNITED STATES AND THE PSP ASSOCIATION IN THE UNITED KINGDOM.
- $1.1 million spent. THE PREVALENCE OF PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS COMPARABLE TO THAT OF ALS (AMYOTROPHIC LATERAL SCLEROSIS), YET PSP, ALONG WITH CORTICOBASAL DEGENERATION (CBD) AND MULTIPLE SYSTEM ATROPHY (MSA), REMAINS SIGNIFICANTLY UNDERRECOGNIZED COMPARED TO ALS. CUREPSP IS DEDICATED TO RAISING AWARENESS FOR THESE CONDITIONS AND SUPPORTING THE PATIENTS, FAMILIES, AND CAREGIVERS AFFECTED BY THEM, EMPOWERING THEM TO ADVOCATE EFFECTIVELY FOR THEIR NEEDS. THE ORGANIZATION IS COMMITTED TO ENHANCING QUALITY OF LIFE AND PATIENT OUTCOMES BY BUILDING A RESILIENT AND SUPPORTIVE COMMUNITY THAT GROW AWARENESS NATIONALLY AND GLOBALLY. CONTINUED ON SCHEDULE OCUREPSP PURSUES THESE GOALS THROUGH VOLUNTEER DEVELOPMENT PROGRAMS, PROFESSIONAL EDUCATION, AND THE DISTRIBUTION OF EDUCATIONAL RESOURCES BOTH ONLINE AND IN PRINT FOR THE PUBLIC AND HEALTHCARE PROFESSIONALS. ADDITIONALLY, IT ACTIVELY SHARES VITAL INFORMATION THROUGH SOCIAL MEDIA AND ONLINE NEWSLETTERS. CUREPSP ENGAGES IN ADVOCACY TO ADVANCE PUBLIC POLICIES THAT IMPROVE CARE, SUPPORT RESEARCH, AND INCREASE AWARENESS. THE ORGANIZATION MOBILIZES PATIENTS, CARE PARTNERS, AND VOLUNTEERS TO PARTICIPATE IN LEGISLATIVE OUTREACH, EDUCATES POLICYMAKERS ABOUT THE NEEDS OF THE COMMUNITY, AND COLLABORATES WITH NATIONAL ADVOCACY COALITIONS TO PROMOTE POLICIES THAT EXPAND ACCESS TO CARE, SUPPORT FAMILY CARE PARTNERS, IMPROVE DIAGNOSTICS, AND INCREASE FEDERAL INVESTMENT IN RESEARCH. THROUGH THESE EFFORTS, CUREPSP HAS HELPED ADVANCE FEDERAL AND STATE POLICY INITIATIVES RELATED TO TELEHEALTH ACCESS, COORDINATED NATIONAL STRATEGIES FOR PARKINSONIAN DISEASES, AND INCREASED RECOGNITION OF THESE CONDITIONS WITHIN FEDERAL RESEARCH PRIORITIES.
- $1.4 million spent. CUREPSP PUBLISHES A LIBRARY OF PRINTED AND ONLINE EDUCATIONAL MATERIALS FOR FAMILIES, PATIENTS, PHYSICIANS, AND OTHER HEALTHCARE PROFESSIONALS. THESE MATERIALS ARE DEVELOPED IN COLLABORATION WITH CUREPSP CENTERS OF CARE, A NETWORK OF HOSPITALS AND BEST-IN-CLASS ACADEMIC CENTERS SPECIALIZING IN TREATING PATIENTS WITH PSP, CBD, AND MSA. CUREPSP SPONSORS EDUCATIONAL CONFERENCES IN COLLABORATION WITH LEADING INSTITUTIONS TO INCREASE KNOWLEDGE AND SUPPORT PEOPLE LIVING WITH THESE FATAL DISEASES. THE OBJECTIVE IS TO PROMOTE EDUCATION, EARLIER AND MORE ACCURATE DIAGNOSIS AND BETTER PATIENT CARE. SEVERAL DOZEN VOLUNTEER EVENTS ANNUALLY, SUPPORTED BY CUREPSP, FURTHER EDUCATE, AND EMPOWER OUR COMMUNITY TO PREPARE FOR THEIR CARE NEEDS. (CONTINUE ON SCHEDULE O)CUREPSP UTILIZES SOCIAL MEDIA, ONLINE PLATFORMS, AND EDUCATIONAL PROGRAMMING TO COMMUNICATE WITH AND SUPPORT PATIENTS, CARE PARTNERS, AND HEALTHCARE PROFESSIONALS. THE ORGANIZATION MAINTAINS AN ONLINE PATIENT AND CAREGIVER FORUM, PRODUCES NATIONAL WEBINARS AND EDUCATIONAL PRESENTATIONS FROM CLINICIANS AND RESEARCHERS, AND HOSTS "ASK THE EXPERTS" INTERACTIVE SESSIONS. CUREPSP ALSO ORGANIZES ONLINE SUPPORT GROUPS, ANNUAL WELLNESS WORKSHOPS, AND AN IN-PERSON COMMUNITY GATHERING TO HELP INDIVIDUALS MANAGE DISEASE BURDEN AND THE CHALLENGES OF CAREGIVING. THROUGH THE CUREPSP QUALITY OF LIFE RESPITE GRANT PROGRAM, SUPPORTED BY THE CHERIE LEVIEN QUALITY OF LIFE FUND AND OTHER DONORS, THE ORGANIZATION PROVIDES FINANCIAL ASSISTANCE TO HELP FAMILIES ACCESS PROFESSIONAL IN-HOME CARE. CUREPSP SUPPORTS MORE THAN 50 VIRTUAL AND IN-PERSON SUPPORT GROUPS AND LEVERAGES A GLOBAL NETWORK OF MORE THAN 350 VOLUNTEERS TO PROVIDE ONLINE, TELEPHONE, AND FACE-TO-FACE SUPPORT.CUREPSP ESTABLISHED THE CUREPSP CENTERS OF CARE NETWORK IN 2017 TO IMPROVE ACCESS TO HIGH-QUALITY, SPECIALIZED CLINICAL CARE. MEDICAL CENTERS ARE DESIGNATED BASED ON CRITERIA INCLUDING EXPERTISE IN DIAGNOSIS AND MANAGEMENT, AVAILABILITY OF MULTIDISCIPLINARY CARE AND SUPPORT SERVICES, AND PARTICIPATION IN CLINICAL RESEARCH. THROUGH THIS NETWORK, CUREPSP COLLABORATES WITH LEADING MEDICAL CENTERS TO PROMOTE EARLIER DIAGNOSIS, ADVANCE BEST PRACTICES IN CARE, EXPAND ACCESS TO SPECIALIZED SERVICES, AND SUPPORT CLINICAL RESEARCH. THE NETWORK NOW INCLUDES CENTERS IN THE UNITED STATES AND CANADA, WITH ADDITIONAL CENTERS PLANNED IN EUROPE.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending June 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since June 1991.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.
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