2024-05-14T08:28:39-05:00 2023-06-30 812950760 SAX LLP 1040 AVENUE OF THE AMERICAS 16TH FLOOR NEW YORK NY 10018 990 2022-07-01 521704978 CUREPSP INC CURE 6467251453 325 HUDSON STREET 4TH FLOOR NEW YORK NY 100131045 KRISTOPHE DIAZ EXECUTIVE DIRECTOR 6467251453 2024-05-14 1 KRISTOPHE DIAZ 999009999 0 MIKE SCHALL P02024184 2122682804 2024-05-13 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z KRISTOPHE DIAZ 325 HUDSON STREET 4TH FLOOR NEW YORK NY 100131045 3521970 0 X WWW.CUREPSP.ORG X 1990 MD TO RAISE AWARENESS, BUILD COMMUNITY, IMPROVE CARE AND FIND A CURE FOR PSP, CBD AND MSA. 15 15 13 270 0 0 3585545 3237361 0 0 217382 53126 3984 18460 3806911 3308947 991063 1243837 0 0 1122055 1361644 0 0 361557 1348289 1651095 3461407 4256576 345504 -947629 7863202 7777249 1105775 1404498 6757427 6372751 X TO RAISE AWARENESS, BUILD COMMUNITY, IMPROVE CARE AND FIND A CURE FOR PSP, CBD AND MSA. 0 0 1850176 1062290 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. 798475 50325 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. 771509 1321221 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. 3420160 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 1 0 1 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 27 0 1 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 15 15 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AR CA FL GA HI IL KS KY MD MA MI MN MS NH NJ NM NY NC OR PA RI SC TN UT VA WV WI X X KRISTOPHE DIAZ 6467251453 325 HUDSON STREET 4TH FLOOR NEW YORK NY 100131045 ANDREW MAUS CHAIR 6.00 X X 0 0 0 AMY BRANCH VICE CHAIR 12.00 X X 0 0 0 LARRY GOLBE CHAIR SAB 12.00 X X 0 0 0 JUSTIN SHEA TREASURER 2.00 X X 0 0 0 LAWRENCE LEVIEN SECRETARY 1.00 X X 0 0 0 JACK PHILIPS DIRECTOR 5.00 X 0 0 0 ILEEN MCFARLAND DIRECTOR 35.00 X 0 0 0 MANA BHATT SANGHVI DIRECTOR 2.00 X 0 0 0 JAMES MCCLELLAN DIRECTOR 1.00 X 0 0 0 MAGGIE ORSETH DIRECTOR 1.00 X 0 0 0 ALEXANDER PANTELYAT DIRECTOR 2.00 X 0 0 0 ROBERT HAND DIRECTOR (THROUGH 10/22) 1.00 X 0 0 0 PAUL FREEMAN DIRECTOR 2.00 X 0 0 0 WILLIAM MCFARLAND DIRECTOR 4.00 X 0 0 0 LOUIS FOXWELL DIRECTOR 3.00 X 0 0 0 NADINE TATTON DIRECTOR 1.00 X 0 0 0 KRISTOPHE DIAZ EXECUTIVE DIRECTOR 40.00 X 195042 0 15937 JACLYN C ZENDRIAN SENIOR DIRECTOR 40.00 X 101689 0 17950 JESSICA SHURER DIRECTOR, PATIENT AND CAREPARTNER ADVOCACY 40.00 X 100190 0 17824 396921 0 51711 3 0 1 0 REGINA PRINTING 260 WAGNER STREET MIDDLESEX NJ 08846 PRINTING SERVICES 290526 ARABELLA ADVISORS LLC 1828 L ST NORTHWEST STE 300 WASHINGTON DC 20036 ACCOUNTING SERVICES 116572 2 336006 2901355 3237361 189592 189592 23282 159748 -136466 -136466 -136466 52581 336006 52581 0 7971 694 7277 7277 OTHER REVENUE 900099 11183 11183 11183 3308947 7277 0 64309 875133 875133 358704 358704 10000 10000 235271 188217 23527 23527 871378 716193 72722 82463 16061 13299 1205 1557 152148 126435 11012 14701 86786 71863 6509 8414 48870 48870 146344 146344 11445 11445 93821 81624 6597 5600 455166 272592 3611 178963 6475 5423 458 594 130987 113717 7428 9842 63965 53048 4751 6166 162847 114626 29869 18352 52123 44307 6714 1102 10936 9058 816 1062 14196 12655 1541 RESEARCH 257452 257452 OTHER EXPENSES 103004 23716 75988 3300 DIRECT MAIL 51400 51400 POSTAGE AND SHIPPING 34884 28575 1936 4373 7180 4778 2402 4256576 3420160 474859 361557 1509198 729889 363665 224301 56899 69771 144499 163233 299239 213591 3650 85648 5658237 6386382 127054 118025 7863202 7777249 205592 207089 676670 973896 223513 223513 1105775 1404498 X 5663353 5218158 1094074 1154593 6757427 6372751 7863202 7777249 -947629 562953 0 X X 0 1 X 1 0 X 2845244 3419168 6290908 3585545 3237361 19378226 205367 7277 212644 3050611 3419168 6290908 3585545 3244638 19590870 74320 33051 82413 122202 89000 400986 0 74320 33051 82413 122202 89000 400986 19189884 27191 76559 18990 237008 189592 549340 27191 76559 18990 237008 189592 549340 16637 22737 23693 3984 11183 78234 3094439 3518464 6333591 3826537 3445413 20218444 0.94910 0.95490 0.02720 0.01900 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 351053 32546 26000 357599 397078 -43025 3000 351053 316620 80458 397078 332916 -1296 15000 316620 452650 9116 128850 332916 1.00000 0 0 34293 27511 6782 264946 186080 78866 85648 X 3860455 562953 562953 3297502 11445 11445 3308947 4245131 0 4245131 11445 11445 4256576 PART X, LINE 2: THE ORGANIZATION DOES NOT BELIEVE ITS FINANCIAL STATEMENTS INCLUDE ANY UNCERTAIN TAX POSITIONS. TAX FILING FOR THE PERIOD ENDING JUNE 30, 2020 AND LATER ARE SUBJECT TO EXAMINATION BY APPLICABLE TAXING AUTHORITIES. 0 NORTH AMERICA GRANTMAKING FUNDING RESEARCH [CURE PILLAR OF OUR MISSION] 79000 EUROPE (INCLUDING ICELAND & GREENLAND) GRANTMAKING FUNDING RESEARCH [CURE PILLAR OF OUR MISSION] 100000 EUROPE (INCLUDING ICELAND & GREENLAND) GRANTMAKING FUNDING RESEARCH [CURE PILLAR OF OUR MISSION] 85000 NORTH AMERICA GRANTMAKING URSO (ENDOWMENT) STUDENT FELLOWSHIP GRANT [CURE PILLAR OF OUR MISSION] 10000 EUROPE (INCLUDING ICELAND & GREENLAND) GRANTMAKING FUNDING RESEARCH [CURE PILLAR OF OUR MISSION] 83000 SOUTH AMERICA GRANTMAKING FUNDING RESEARCH [CURE PILLAR OF OUR MISSION] 99884 0 0 0 0 0 0 456884 0 456884 NORTH AMERICA RESEARCH AND FELLOWSHIP GRANTS 89000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH FUNDING 85000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) FUNDING RESEARCH 100000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH FUNDING 83000 WIRE 0 SOUTH AMERICA RESEARCH FUNDING 99884 WIRE 0 6 0 0 0 0 0 0 PART I, LINE 2: GRANT RECIPIENTS MUST ADHERE TO SPECIFIC REPORTING GUIDELINES THROUGHOUT THE DURATION OF THEIR FUNDING. AT THE MIDPOINT OF THE GRANT PERIOD, INVESTIGATORS MUST SUBMIT BOTH A FINANCIAL REPORT AND A SCIENTIFIC PROGRESS REPORT. THESE REPORTS PROVIDE A DETAILED ACCOUNT OF THE FINANCIAL EXPENDITURES RELATED AND SUMMARIZE THE SCIENTIFIC ADVANCES ACHIEVED TO DATE AND ACCORDING TO THE PROJECT PLAN. AT THE CONCLUSION OF THE GRANT PERIOD, A FINAL SET OF FINANCIAL AND SCIENTIFIC PROGRESS REPORTS MUST BE SUBMITTED. THESE DOCUMENTS ARE CRUCIAL FOR EVALUATING THE OUTCOMES AND FISCAL MANAGEMENT OF THE PROJECT. THE REPORTS ARE REVIEWED BY THE ASSOCIATE DIRECTOR OF SCIENTIFIC AFFAIRS AND THE CHIEF SCIENCE OFFICER, AND SUBSEQUENT FUNDING DISBURSEMENTS ARE CONTINGENT UPON APPROVAL. FAILURE TO SUBMIT SATISFACTORY REPORTS MAY RESULT IN THE WITHHOLDING OF PAYMENTS." PART III ACCOUNTING METHOD: X X X 1 TEXAS ART FUNDRAISER 47063 29954 17109 17109 ANNUAL CUREPSP AWARENESS WALK 164725 131058 33667 33667 2 176799 174994 1805 1805 388587 336006 52581 52581 52581 0 1 THE UNIVERSITY OF ALABAMA AT BIRMINGHAM 701 20TH STREET SOUTH - AB921 BIRMINGHAM AL 352940109 636005396 0 85000 FUNDING RESEARCH COLUMBIA UNIVERSITY 615 WEST 131ST 3RD FLOOR NEW YORK NY 10027 135598093 501C3 0 99985 FUNDING RESEARCH ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI 1 GUSTAVE L LEVY PLACE NEW YORK NY 100296574 136171197 501C3 0 100000 FUNDING RESEARCH SJO RESEARCH & CONSULTING 205 COUNTRY LANE PHOENIXVILLE PA 19460 451290156 501C3 0 50325 SPECIAL INITIATIVE GRANT, PATIENT JOURNEY PROJECT NORTH TEXAS COMMUNITY FOUNDATION 777 MAIN STREET SUITE 2850 FORT WORTH TX 76102 752267767 501C3 0 257000 RAINWATER PRIME OF LIFE BRAIN INITIATIVE STANFORD UNIVERSITY 485 BROADWAY REDWOOD CITY CA 94063 941156365 501C3 0 6000 URSO (ENDOWMENT) STUDENT FELLOWSHIP GRANT RESEARCH FOUNDATION FOR STATE UNIVERSITY OF NY - BUFFALO THE UB COMMONS SUITE 211 AMHERST NY 14228 141368361 501C3 0 10000 URSO (ENDOWMENT) STUDENT FELLOWSHIP GRANT UNIVERSITY OF CHICAGO 5801 SOUTH ELLIS AVENUE CHICAGO IL 60637 362177139 501C3 0 27000 CENTERS OF CARE GRANT JOHNS HOPKINS UNIVERSITY 12529 COLLECTIONS CENTER DRIVE CHICAGO IL 60693 520595110 501C3 0 27000 CENTERS OF CARE GRANT THE PARKINSONS AND MOVEMENT DISORDERS CENTER (UPENN) 330 SOUTH 9TH STREET PHILADELPHIA PA 19107 231352685 501C3 0 27000 CENTERS OF CARE GRANT 10 1 PIPELINE GRANTS 286 358704 PART I, LINE 2: INVESTIGATORS ARE REQUIRED TO PROVIDE TWO PROGRESS REPORTS DURING THE TERM OF THE GRANT. THE PROGRESS REPORT IS SENT FOR REVIEW AND APPROVAL TO THE VICE PRESIDENT OF SCIENTIFIC AFFAIRS AND PAYMENT MAY BE RELEASED ONLY AFTER APPROVAL HAS BEEN GIVEN. IF PROGRESS REPORTS ARE NOT DETERMINED TO BE SATISFACTORY, PAYMENT MAY BE WITHHELD UNTIL THE INVESTIGATOR CAN PROVIDE A SATISFACTORY REPORT. X 0 0 0 0 0 0 0 0 0 KRISTOPHE DIAZ EXECUTIVE DIRECTOR 195042 0 0 0 0 0 0 0 15937 0 210979 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 WILLIAM R. MCFARLAND AND ILEEN J MCFARLAND ARE HUSBAND AND WIFE. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS PROVIDED TO THE FINANCE COMMITTEE FOR REVIEW AND APPROVAL. THE FORM IS THEN PROVIDED TO THE FULL BOARD OF DIRECTORS FOR A PERIOD TO MAKE COMMENTS BEFORE FILING WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION HAS A BOARD APPROVED CONFLICTS OF INTEREST POLICY. EACH BOARD MEMBER MUST FILL OUT AN ANNUAL DECLARATION STATING THEY HAD NO CONFLICTS OR IDENTIFYING THE NATURE OF THEIR INTERESTED PARTY TRANSACTIONS. FORM 990, PART VI, SECTION B, LINE 15A THE BOARD OF DIRECTORS DISCUSSED PERFORMANCE AND USES SALARY DATA TO DETERMINE. PERIODICALLY THE BOARD ALSO OBTAINS AN INDEPENDENT COMPENSATION STUDY TO DETERMINE SALARY LEVELS. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS ARE MADE AVAILABLE UPON REQUEST. FORM 990, PART XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.