Form 990 for tax year 2022

Totals

Total revenue

$3,308,947

Total expenses

$4,256,576

Contributions and grants received

$3,237,361

Grants paid

$1,243,837

Program service revenue

$0

Investment income

$53,126

Other revenue

$18,460

Total assets, end of year

$7,777,249

Total liabilities, end of year

$1,404,498

Net assets or fund balances, end of year

$6,372,751

Program services expenses (Part IX)

$3,420,160

Management and general expenses

$474,859

Fundraising expenses

$361,557

Program service expenses (Part III)

$3,420,160

Program services were 80.4% 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 · 2022

• CUREPSP SERVES AS A CATALYST FOR DEVELOPING NEW TREATMENTS AND ULTIMATELY A CURE FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) AND CORTICOBASAL DEGENERATION (CBD), BOTH OF WHICH ARE PRIMARY TAUOPATHIES. THE SCIENTIFIC RESEARCH AND PROJECTS SUPPORTED BY CUREPSP NOT ONLY FOCUS ON THESE CONDITIONS BUT ALSO BENEFIT BROADER SCIENTIFIC PRIORITIES RELATED TO OTHER NEURODEGENERATIVE DISEASES, INCLUDING ALZHEIMER'S, PICK'S DISEASE, ARGYROPHILIC GRAIN DISEASE, CHRONIC TRAUMATIC ENCEPHALOPATHY, AND CERTAIN TYPES OF FAMILIAL FRONTOTEMPORAL DEMENTIA. THIS BROAD IMPACT UNDERSCORES THE SIGNIFICANCE OF CUREPSP'S CONTRIBUTIONS TO THE FIELD OF NEUROLOGICAL RESEARCH. CONTINUED ON SCHEDULE O.CUREPSP'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 BIOMARKERS AND CLINICAL TESTS TO ENHANCE DIAGNOSIS AND FACILITATE 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, AND (E) ASSISTING PHARMACEUTICAL COMPANIES AND RESEARCH INSTITUTIONS IN RECRUITING PARTICIPANTS FOR CLINICAL TRIALS AND PROMOTING THESE TRIALS. ADDITIONALLY, CUREPSP COLLABORATES WITH LEADING INSTITUTIONS LIKE THE MAYO CLINIC'S BRAIN BANK IN JACKSONVILLE, FLORIDA, TO SUPPLY ESSENTIAL BRAIN TISSUE SAMPLES TO RESEARCHERS WORLDWIDE, THEREBY 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 $1,850,176 · Grants $1,062,290

• THE PREVALENCE OF PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS ON PAR WITH 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 BOOSTS AWARENESS. CONTINUED ON SCHEDULE O.CUREPSP PURSUES THESE GOALS THROUGH VOLUNTEER DEVELOPMENT PROGRAMS, PROFESSIONAL EDUCATION, AND BY DISTRIBUTING 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 AND ENCOURAGES COMMUNITY INVOLVEMENT IN LEGISLATIVE ADVOCACY EFFORTS AIMED AT IMPROVING QUALITY OF LIFE FOR THOSE IMPACTED. WITH THE AID OF VOLUNTEERS, CUREPSP IS ALSO ADVANCING ITS PUBLIC POLICY AGENDA, FOCUSING ON INCREASING AWARENESS AND SUPPORT FOR PSP, CBD, AND MSA.

  Expenses $798,475 · Grants $50,325

• 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.CONTINUED ON SCHEDULE O.CUREPSP USES SEVERAL SOCIAL MEDIA PLATFORMS TO COMMUNICATE WITH ITS CONSTITUENTS, MAINTAINS AN ONLINE PATIENT AND CAREGIVER FORUM, AND PRODUCES NATIONAL WEBINARS, ONLINE SUPPORT GROUPS, AND ONLINE PRESENTATIONS FROM CLINICIANS AND RESEARCHERS. THE CUREPSP QUALITY OF LIFE RESPITE GRANT, SUPPORTED BY THE CHERIE LEVIEN QUALITY OF LIFE FUND, OFFERS FINANCIAL ASSISTANCE TO MAKE PROFESSIONAL IN-HOME CARE MORE AFFORDABLE AND ACCESSIBLE FOR FAMILIES IN NEED.AS PART OF ITS EDUCATIONAL OUTREACH, CUREPSP HOSTS "ASK THE EXPERTS" INTERACTIVE WEBINARS, WHERE RESEARCHERS AND HEALTHCARE PROFESSIONALS SHARE THEIR INSIGHTS, ADVICE, AND RESEARCH FINDINGS WITH PATIENTS AND CAREGIVERS. ADDITIONALLY, CUREPSP CONDUCTS AN ANNUAL ONLINE "WELLNESS WORKSHOP" TO EDUCATE ATTENDEES ON MANAGING DISEASE BURDEN AND THE STRESSES ASSOCIATED WITH CAREGIVING FOR THESE INCURABLE DISORDERS. SUPPORTING OVER 50 VIRTUAL AND IN-PERSON SUPPORT GROUPS, CUREPSP LEVERAGES ITS NETWORK OF MORE THAN 270 VOLUNTEERS GLOBALLY TO PROVIDE COMPREHENSIVE ONLINE, TELEPHONE, AND FACE-TO-FACE SUPPORT.CUREPSP ALSO SPEARHEADS THE CUREPSP CENTER OF CARE PROGRAM, A COLLABORATIVE ALLIANCE THAT FOSTERS A NETWORK OF MEDICAL AND RESEARCH CENTERS ACROSS THE UNITED STATES AND CANADA. THIS PROGRAM AIMS TO CONNECT INDIVIDUALS DIAGNOSED WITH PSP (PROGRESSIVE SUPRANUCLEAR PALSY), CBD (CORTICOBASAL DEGENERATION), AND MSA (MULTIPLE SYSTEM ATROPHY) WITH TOP-TIER CARE. THE MISSION OF THE CUREPSP CENTERS OF CARE IS MULTIFACETED, FOCUSING ON ENHANCING ACCESS TO ACCURATE AND EARLY DIAGNOSES, PROVIDING STATE-OF-THE-ART CLINICAL CARE, OFFERING COMPREHENSIVE SUPPORT, SERVING AS REGIONAL LEADERS, RAISING AWARENESS OF THESE DISEASES, OPTIMIZING CARE STANDARDS, AND FOSTERING MULTI-CENTER RESEARCH INITIATIVES. THESE CENTERS ARE OFTEN SELECTED AS SITES FOR CLINICAL TRIALS, WHERE CUREPSP'S STRATEGIC PARTNERSHIPS HELP PHARMACEUTICAL COMPANIES IDENTIFY THE BEST LOCATIONS FOR TRIALS AND ENHANCE TRIAL QUALITY. ADDITIONALLY, THE COLLABORATIVE APPROACHES TO RESOURCES, EDUCATION, AND SUPPORT (CARES) GRANT PROGRAM, LAUNCHED IN 2022, AIMS TO FOSTER PARTNERSHIPS WITHIN THE CENTER NETWORK TO ADDRESS THE UNMET CARE NEEDS OF THE CUREPSP COMMUNITY.

  Expenses $771,509 · Grants $1,321,221

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

• ANDREW MAUS

  CHAIR

  Total calculated

  $0

  Hours/week

  6

• AMY BRANCH

  VICE CHAIR

  Total calculated

  $0

  Hours/week

  12

• LARRY GOLBE

  CHAIR SAB

  Total calculated

  $0

  Hours/week

  12

• JUSTIN SHEA

  TREASURER

  Total calculated

  $0

  Hours/week

  2

• LAWRENCE LEVIEN

  SECRETARY

  Total calculated

  $0

  Hours/week

  1

• JACK PHILIPS

  DIRECTOR

  Total calculated

  $0

  Hours/week

  5

• ILEEN MCFARLAND

  DIRECTOR

  Total calculated

  $0

  Hours/week

  35

• MANA BHATT SANGHVI

  DIRECTOR

  Total calculated

  $0

  Hours/week

  2

• JAMES MCCLELLAN

  DIRECTOR

  Total calculated

  $0

  Hours/week

  1

• MAGGIE ORSETH

  DIRECTOR

  Total calculated

  $0

  Hours/week

  1

• ALEXANDER PANTELYAT

  DIRECTOR

  Total calculated

  $0

  Hours/week

  2

• ROBERT HAND

  DIRECTOR (THROUGH 10/22)

  Total calculated

  $0

  Hours/week

  1

• PAUL FREEMAN

  DIRECTOR

  Total calculated

  $0

  Hours/week

  2

• WILLIAM MCFARLAND

  DIRECTOR

  Total calculated

  $0

  Hours/week

  4

• LOUIS FOXWELL

  DIRECTOR

  Total calculated

  $0

  Hours/week

  3

• NADINE TATTON

  DIRECTOR

  Total calculated

  $0

  Hours/week

  1

• KRISTOPHE DIAZ

  EXECUTIVE DIRECTOR

  Total calculated

  $210,979

  From this org

  $195,042

  From related orgs

  $0

  Other

  $15,937

  Hours/week

  40

  Schedule J breakdown matched by us

  Base

  $195,042

  Bonus

  $0

  Other

  $0

  Deferred

  $0

  Nontaxable benefits

  $15,937

  Filer's total

  $210,979

• JACLYN C ZENDRIAN

  SENIOR DIRECTOR

  Total calculated

  $119,639

  From this org

  $101,689

  From related orgs

  $0

  Other

  $17,950

  Hours/week

  40

• JESSICA SHURER

  DIRECTOR, PATIENT AND CAREPARTNER ADVOCACY

  Total calculated

  $118,014

  From this org

  $100,190

  From related orgs

  $0

  Other

  $17,824

  Hours/week

  40

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

• THE UNIVERSITY OF ALABAMA AT BIRMINGHAM

  $0

  FUNDING RESEARCH

• COLUMBIA UNIVERSITY

  $0

  FUNDING RESEARCH

• ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI

  $0

  FUNDING RESEARCH

• SJO RESEARCH & CONSULTING

  $0

  SPECIAL INITIATIVE GRANT, PATIENT JOURNEY PROJECT

• NORTH TEXAS COMMUNITY FOUNDATION

  $0

  RAINWATER PRIME OF LIFE BRAIN INITIATIVE

• STANFORD UNIVERSITY

  $0

  URSO (ENDOWMENT) STUDENT FELLOWSHIP GRANT

• RESEARCH FOUNDATION FOR STATE UNIVERSITY OF NY - BUFFALO

  $0

  URSO (ENDOWMENT) STUDENT FELLOWSHIP GRANT

• UNIVERSITY OF CHICAGO

  $0

  CENTERS OF CARE GRANT

• JOHNS HOPKINS UNIVERSITY

  $0

  CENTERS OF CARE GRANT

• THE PARKINSONS AND MOVEMENT DISORDERS CENTER (UPENN)

  $0

  CENTERS OF CARE GRANT

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

Provenance

Return type

form_990

Tax year

2022

Filed

14 May 2024

IRS schema version

2022v5.0

Source object

202411359349302616

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.