CUREPSP INC

EIN: 521704978 501(c)(3) Diseases & Disorders

NEW YORK, NY

Total Revenue
$7,903,274
Total Expenses
$5,865,853
Total Assets
$11,029,404
Net Assets
$9,889,995
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Financial Trends

Organization Details

Formation Year
1990
Legal Domicile
MD
Principal Officer
KRISTOPHE DIAZ
Phone
6467251453
Tax Period
2024-07-01 to 2025-06-30

CUREPSP INC, founded in 1990, is a community nonprofit in the Diseases & Disorders sector that reported $7.9M in total revenue in fiscal year 2024. Revenue surged 54% from the prior year, signaling strong growth momentum. The organization ran a surplus of $2.0M, a strong 26% operating margin.

Mission

TO RAISE AWARENESS, BUILD COMMUNITY, IMPROVE CARE AND FIND A CURE FOR PSP, CBD AND MSA.

Program Service Accomplishments

Program 1
Expenses: $2,252,697 Revenue: $3,218

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...

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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.

Program 2
Expenses: $1,101,271

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...

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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.

Program 3
Expenses: $1,398,788

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...

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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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $7,506,914
Program Service Revenue $0
Investment Income $370,642
Other Revenue $25,718
TOTAL REVENUE $7,903,274

Expense Breakdown

Grants Paid $1,740,086
Salaries & Benefits $2,059,203
Fundraising Expenses $518,814
Program Expenses $4,752,756
Other Expenses $2,066,564
TOTAL EXPENSES $5,865,853

Year-over-Year Comparison

2024 2023 Change
Revenue $7,903,274 $5,127,686 +0.5%
Expenses $5,865,853 $4,845,918 +0.2%
Net Income $2,037,421 $281,768 +6.2%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
14
Independent Members
14
Employees
17
Volunteers
350

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
6
$290,496
Total Directors
14
$0
Key Employees
0
$0
Highest Compensated
3
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
JACK PHILLIPS CHAIR 25.00
Officer Director
$0 $0 $0
AMY BRANCH VICE CHAIR 8.00
Officer Director
$0 $0 $0
JUSTIN SHEA TREASURER 2.00
Officer Director
$0 $0 $0
LAWRENCE LEVIEN SECRETARY 1.00
Officer Director
$0 $0 $0
LAWRENCE GOLBE CHAIR - SCIENTIFIC ADVISOR 2.00
Officer Director
$0 $0 $0
WILLIAM MCFARLAND DIRECTOR 3.00
Director
$0 $0 $0
JAMES MCCLELLAN DIRECTOR 0.50
Director
$0 $0 $0
ILEEN MCFARLAND DIRECTOR 35.00
Director
$0 $0 $0
LOUIS FOXWELL DIRECTOR 3.00
Director
$0 $0 $0
ALEXANDER PANTELYAT DIRECTOR 3.00
Director
$0 $0 $0
PAUL FREEMAN DIRECTOR 3.00
Director
$0 $0 $0
MANA BHATT SANGHVI DIRECTOR 2.00
Director
$0 $0 $0
NADINE TATTON DIRECTOR 0.50
Director
$0 $0 $0
MARIA SCHMIDT DIRECTOR 2.00
Director
$0 $0 $0
KRISTOPHE J DIAZ EXE DIR AND CHIEF SCIENCE OFFICER 40.00
Officer
$266,514 $23,982 $290,496
RICHARD T SPAIN IV DIRECTOR, DEVELOPMENT 40.00
Highest
$161,643 $22,585 $184,228
JENNIFER L BRUMMET ASSOC. DIR. CLINICAL AFFAIRS AND ADVOCACY 40.00
Highest
$149,533 $22,420 $171,953
JESSICA SHURER DIR. CLINICAL AFFAIRS AND ADVOCACY 40.00
Highest
$113,088 $21,205 $134,293
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $7,903,274 $5,865,853 $11,029,404 $2,037,421
2024 $5,127,686 $4,845,918 $8,687,169 $281,768
2023 $3,308,947 $4,256,576 $7,777,249 $-947,629
2022 $3,806,911 $3,461,407 $7,863,202 $345,504
2021 $6,342,039 $3,488,363 $8,414,669 $2,853,676
2020 $3,522,143 $2,632,741 $5,358,201 $889,402
2019 $3,115,437 $2,394,117 $4,347,464 $721,320
2018 $2,838,978 $2,564,520 $3,716,323 $274,458
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