Form 990 for tax year 2024

Totals

Total revenue

$7,903,274

Total expenses

$5,865,853

Contributions and grants received

$7,506,914

Grants paid

$1,740,086

Program service revenue

$0

Investment income

$370,642

Other revenue

$25,718

Total assets, end of year

$11,029,404

Total liabilities, end of year

$1,139,409

Net assets or fund balances, end of year

$9,889,995

Program services expenses (Part IX)

$4,752,756

Management and general expenses

$594,283

Fundraising expenses

$518,814

Program service expenses (Part III)

$4,752,756

Program services were 81.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2024

• 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.

  Expenses $2,252,697 · Grants $1,170,733 · Revenue $3,218

• 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.

  Expenses $1,101,271 · Grants $30,000

• 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.

  Expenses $1,398,788 · Grants $539,353

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• NORTH TEXAS COMMUNITY FOUNDATION

  $200,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• REGENERATIVE RESEARCH FOUNDATION

  $150,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• ALZHEIMERS ASSOCIATION

  $125,000

  SPECIAL INITIATIVE GRANT: REIMB. FOR GLOBAL TAU MEETING, LONDON, APRIL 24-25, 2025

• BAYLOR COLLEGE OF MEDICINE - GRANTS

  $100,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• MAYO CLINIC JACKSONVILLE

  $100,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• UNIVERSITY OF MASSACHUSETTS

  $100,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• UNIVERSITY OF NEBRASKA MEDICAL CENTER

  $100,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• WASHINGTON UNIVERSITY

  $100,000

  FUNDING RESEARCH - CURE PILLAR OF OUR MISSION

• SJO RESEARCH & CONSULTING

  $54,474

  RESEARCH GRANT

• STANFORD OFFICE OF RESEARCH ADMINISTRATION

  $50,000

  FY25 CENTER OF CARE AWARD GRANT

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type

form_990

Tax year

2024

Filed

27 April 2026

IRS schema version

2024v5.5

Source object

202601179349301220

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.