2019-03-24T07:53:17-05:00 2018-06-30 521798441 WOLFE & FIEDLER PA 634 FREDERICK RD STE 1 CATONSVILLE MD 21228 990 2017-07-01 521704978 CUREPSP INC CURE 8027341185 1216 BROADWAY 2ND FLOOR NEW YORK NY 10001 DAVID KEMP PRESIDENT 8027341185 2019-03-24 true JOHN R FIEDLER P00147612 4107470789 2019-03-24 216.230.123.34 2019-03-24 07:53:17 CD P DD9F2335B466B4A5B8505C1A07781CE3E36E00B4 DD9F2335B466B4A5B8505C1A07781CE3E36E00B4 2017 2019-02-21 02:37:17Z X DAVID KEMP 1216 BROADWAY 2ND FLOOR NEW YORK NY 10001 2889213 false X WWW.CUREPSP.ORG X 1990 MD CUREPSP IS A NONPROFIT ADVOCACY ORGANIZATION FOCUSED ON PRIME OF LIFE NEURODEGENERATIVE DISEASES, A SPECTRUM OF FATAL BRAIN DISORDERS THAT OFTEN STRIKE DURING MIDDLE AGE. SINCE IT WAS FOUNDED IN 1990, CURE PSP HAS PROVIDED SIGNFICANT SUPPORT FOR SCIENTISTS, PATIENTS AND FAMILIES, AND HEALTHCARE PROFESSIONALS. BECAUSE OF ITS FOCUS ON TAU PROTEIN-RELATED DISEASES LIKE PROGRESSIVE SUPRANUCLEAR PALSY (PSP), CUREPSP OCCUPIES A CENTRAL POSITION IN CURRENT NEURODEGENERATION RESEARCH THROUGH ITS FUNDING OF TALENTED EARLY CAREER INVESTIGATORS AND ITS ABIILITY TO RECRUIT FOR AND MARKET CLINCAL TRIALS IN PSP NOW BEING UNDERTAKEN BY MAJOR PHARMACEUTICAL MANUFACTURERS. 13 13 10 170 0 2577806 2456446 106430 191356 9566 9560 10980 181616 2704782 2838978 329500 577725 0 930159 891055 0 388692 1097564 1095740 2357223 2564520 347559 274458 3074588 3716323 466427 811227 2608161 2905096 X CUREPSP IS A NONPROFIT ADVOCACY ORGANIZATION FOCUSED ON PRIME OF LIFE NEURODEGENERATIVE DISEASES, A SPECTRUM OF FATAL BRAIN DISORDERS THAT OFTEN STRIKE DURING MIDDLE AGE. SINCE IT WAS FOUNDED IN 1990, CURE PSP HAS PROVIDED SIGNFICANT SUPPORT FOR SCIENTISTS, PATIENTS AND FAMILIES, AND HEALTHCARE PROFESSIONALS. BECAUSE OF ITS FOCUS ON TAU PROTEIN-RELATED DISEASES LIKE PROGRESSIVE SUPRANUCLEAR PALSY (PSP), CUREPSP OCCUPIES A CENTRAL POSITION IN CURRENT NEURODEGENERATION RESEARCH THROUGH ITS FUNDING OF TALENTED EARLY CAREER INVESTIGATORS AND ITS ABIILITY TO RECRUIT FOR AND MARKET CLINCAL TRIALS IN PSP NOW BEING UNDERTAKEN BY MAJOR PHARMACEUTICAL MANUFACTURERS. false false 1046703 577725 CUREPSP ADVANCES THE UNDERSTANDING AND SEEKS TREATMENT AND CURE FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) AND RELATED "PRIME OF LIFE" NEURODEGENERATIVE DISEASES BY FUNDING RESEARCH THAT FOCUSES ON (A) THE CAUSES AND RISK FACTORS FOR THESE DISORDERS, (B) BIOMARKERS AND CLINICAL TESTS THAT AID IN DIAGNOSIS, (C) GENETIC VARIANTS THAT ARE ASSOCIATED WITH THE DISEASES, (D) THERAPIES THAT WOULD PREVENT, STOP, OR REVERSE BRAIN DAMAGE ASSOCIATED WITH PATHOLOGICAL PROTEIN ACCUMULATION IN THE BRAIN, AND (E) AIDING PHARMACEUTICAL COMPANIES AND RESEARCH INSTITUTIONS IN RECRUITMENT OF COHORTS FOR CLINICAL TRIALS AND MARKETING OF THOSE TRIALS. CUREPSP PROVIDES CRITICAL BRAIN-TISSUE SAMPLES TO RESEARCHERS THROUGH ITS SUPPORT OF THE MAYO CLINIC'S BRAIN BANK. 514095 95470 CUREPSP ADVOCATES FOR PATIENTS, FAMILIES, AND CAREGIVERS MANAGING PRIME OF LIFE NEURODEGENERATION TO IMPROVE QUALITY OF LIFE AND PATIENT OUTCOMES. CUREPSP DOES THIS THROUGH FAMILY CONFERENCES, CAREGIVER RETREATS, VOLUNTEER DEVELOPMENT, PROFESSIONAL EDUCATION, ONLINE AND PRINTED RESOURCES, AND SOCIAL MEDIA. CUREPSP SUPPORTS SOME 50 SUPPORT GROUPS AND AROUND 200 VOLUNTEERS PROVIDING ONLINE, TELEPHONE, AND FACE-TO-FACE SUPPORT WORLDWIDE. CUREPSP'S CHERIE LEVIEN QUALITY OF LIFE FUND PROVIDES PROFESSIONAL IN-HOME CARE TO FAMILIES IN NEED. 250844 CUREPSP PUBLISHES A LIBRARY OF PRINTED AND ONLINE EDUCATIONAL MATERIALS FOR FAMILIES, PATIENTS, AND PHYISICIANS AND OTHER HEALTHCARE PROFESSIONALS. THE FOUNDATION SPONSORS PROFESSIONAL EDUCATION CONFERENCES IN COLLABORATION WITH LEADING INSTITUTIONS TO INCREASE KNOWLEDGE OF THE DISEASE THAT WILL LEAD TO EARLIER AND MORE ACCURATE DIAGNOSIS AND BETTER PATIENT CARE. SEVERAL DOZEN VOLUNTEER EVENTS ANNUALLY SUPPORTED BY CUREPSP FURTHER EDUCATE THE GENERAL PUBLIC. THE FOUNDATION MAINTAINS AN ONGOING RELATIONSHIP WITH A GLOBAL PR FIRM TO CREATE AWARENESS WITIH PROFESSIONALS AND THE GENERAL PUBLIC. 4477 5545 GOALS OF THE PATIENT ENGAGEMENT PROGRAM: ACCELERATING CLINICAL TRIALS TO DEVELOP TREATMENTS AND DISCOVER CURES FOR RARE DISEASES. 4477 5545 1816119 true true false false false false false false false true true false false false false false true true false false true true false false true false false true false true false false false false false true false true true false false false true false false false false true 19 0 10 true false false false false false false false false false false false false X 13 13 true true false false false false false true true false false false true true true true true true true false AL AK AR CA CO CT DC FL GA HI IL KS KY LA MD ME MA MI MN MS MO NV NH NJ NM NY NC ND OH OK OR PA RI SC TN TX UT VA WA WV WI X X DAVID KEMP 8027341185 1216 BROADWAY 2ND FLOOR NEW YORK NY 10001 WILLIAM MCFARLAND CHAIR 8.00 X X 0 0 0 EVERETT COOK VICE CHAIR 3.50 X X 0 0 0 JAMES SHEA TREASURER 2.00 X X 0 0 0 BRENDAN DIXON SECRETARY 2.00 X X 0 0 0 MAGGIE ORSETH DIRECTOR 2.75 X 0 0 0 ILEEN MCFARLAND DIRECTOR 30.00 X 0 0 0 JOHN BURHOE CHAIR EMERIT 10.00 X 0 0 0 LAWRENCE GOLBE DIRECTOR 2.00 X 0 0 0 AMY BRANCH DIRECTOR 30.00 X 0 0 0 JOHN T BURHOE JR DIRECTOR 2.00 X 0 0 0 STEPHEN GOLDMAN DIRECTOR 4.00 X 0 0 0 JEFFREY FRIEDMAN DIRECTOR 2.00 X 0 0 0 JIM MCCLELLAN DIRECTOR 2.00 X 0 0 0 DAVID KEMP PRESIDENT 45.00 X 199998 0 0 199998 1 false true false 2456446 96133 2456446 SPONSORSHIPS 541700 95470 95470 RESEARCH ROUNDTABLE 541900 90341 90341 PATIENT ENGAGEMENT PROGRAM 541700 5545 5545 191356 12836 12836 10194 4300 9967 7803 227 -3503 -3276 -3503 227 172757 30805 141952 141952 3591 1660 1931 1931 OTHER 37733 37733 37733 2838978 227517 155015 502543 502543 75182 75182 199998 125199 45799 29000 588891 368679 134694 85518 15123 9467 3460 2196 31326 19610 7167 4549 55717 34883 12748 8086 63987 29823 34164 31145 31145 3620 3620 56781 56781 895 448 447 275696 99274 4974 171448 71124 41999 8170 20955 121258 68552 35661 17045 2838 2057 251 530 102431 102431 65197 56783 1582 6832 13959 9399 2790 1770 RESEARCH ROUNDTABLE 72340 72340 PATIENT PROFILES 31451 31451 BRAIN BANK TISSUE HARVEST 24961 24961 BANK & PAYROLL FEES 18574 3856 14718 139483 80637 32801 26045 2564520 1816119 359709 388692 895681 1553651 1478278 1484448 4650 1650 22920 12728 20382 20859 50959 86612 205330 115087 158787 90243 427158 452650 15773 13482 3074588 3716323 112387 119981 354040 531587 159659 466427 811227 X 1844259 2062063 505534 584665 258368 258368 2608161 2905096 3074588 3716323 274458 22477 X false true X true false X 3115827 2521513 3119335 2577806 2456446 13790927 210083 212132 105518 112913 232680 873326 3325910 2733645 3224853 2690719 2689126 14664253 1495316 956514 50696 138765 93594 2734885 1495316 956514 50696 138765 93594 2734885 11929368 10945 12746 15298 10394 12836 62219 10945 12746 15298 10394 12836 62219 140952 140952 3336855 2746391 3240151 2701113 2842914 14867424 0.80240 0.79160 0.00000 0.00000 X 403444 17957 3620 422301 372118 34596 3270 403444 380827 -5591 3118 372118 383411 529 3113 380827 351169 35179 2937 383411 0.22720 0.61840 0.15440 false false 205330 115087 90243 90243 2861455 22477 22477 2838978 2838978 2564520 2564520 2564520 SCHEDULE D, PAGE 2, PART V, LINE 4 INCOME IS USED TO SUPPORT PSP RESEARCH BY STUDENTS true PRECLINICAL RESEARCH 75182 WIRE TFR 1 false false false false false false SCHEDULE F, PAGE 1, 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. SCHEDULE F, PAGE 5, PART V FINANCIAL STATMENT WAS PREPARED ON ACCRUAL METHOD All States MARCO ISLAND WA 29531 29531 594 7681 PUTT FOR PSP 14246 14246 842 5996 1100 5 48026 48026 14592 91803 91803 842 5996 594 23373 30805 60998 true COMMUNITY FOUNDATION OF NORTH TEXAS 306 WEST 7TH STREET SUITE 1045 FORT WORTH TX 76102 752267767 501C3 100000 PRECLINICAL RESEARCH TEACHERS COLLEGE COLUMBIA UNIV 525 WEST 120TH STREET BOX 021 NEW YORK NY 100276696 131624202 501C3 49918 PRECLINICAL RESEARCH UCLA BOX 957089 1125 MURPHY HALL LOS ANGELES CA 900959000 956006143 501C3 95872 PRECLINICAL RESEARCH UNIVERSITY OF PITTSBURGH 200 LOTHROP STREET PITTSBURGH PA 15213 250965591 501C3 59449 PRECLINICAL RESEARCH UNIVERSITY OF NORTH CAROLINA 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 275991350 566001393 501C3 100000 PRECLINICAL RESEARCH JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501C3 75000 PRECLINICAL RESEARCH UCLA BOX 957089 1125 MURPHY HALL LOS ANGELES CA 900959000 956006143 501C3 19476 X false false false false false false false false false DAVID KEMP PRESIDENT 199998 199998 WOLFE FIEDLER PA CPA 28800 ACCOUNTING & CONSULT false X 1 96133 false true false FORM 990 - ORGANIZATION'S MISSION CUREPSP IS A NONPROFIT ADVOCACY ORGANIZATION FOCUSED ON PRIME OF LIFE NEURODEGENERATIVE DISEASES, A SPECTRUM OF FATAL BRAIN DISORDERS THAT OFTEN STRIKE DURING MIDDLE AGE. SINCE IT WAS FOUNDED IN 1990, CURE PSP HAS PROVIDED SIGNFICANT SUPPORT FOR SCIENTISTS, PATIENTS AND FAMILIES, AND HEALTHCARE PROFESSIONALS. BECAUSE OF ITS FOCUS ON TAU PROTEIN-RELATED DISEASES LIKE PROGRESSIVE SUPRANUCLEAR PALSY (PSP), CUREPSP OCCUPIES A CENTRAL POSITION IN CURRENT NEURODEGENERATION RESEARCH THROUGH ITS FUNDING OF TALENTED EARLY CAREER INVESTIGATORS AND ITS ABIILITY TO RECRUIT FOR AND MARKET CLINCAL TRIALS IN PSP NOW BEING UNDERTAKEN BY MAJOR PHARMACEUTICAL MANUFACTURERS. FORM 990, PART III ORGANIZATION'S SIGNIFICANT ACCOMPLISHMENTS 1. FUNDED MORE THAN 180 RESEARCH STUDIES. PROVIDES SEED FUNDING ("VENTURE GRANTS") TO EARLY CAREER INVESTIGATORS. 2. PUT ON AN ANNUAL GLOBAL RESEARCH SYMPOSIUM. 3.REIMBURSED FAMILIES FOR THE COST OF BRAIN DONATION TO THE MAYO CLINIC, WHICH PROVIDES TISSUE SAMPLES TO SCIENTISTS FOR THEIR RESEARCH. 4.PROVIDED PATIENT AND FAMILY SUPPORT THROUGH SOME 50 IN-PERSON SUPPORT GROUPS AND AROUND 200 VOLUNTEERS WHO PROVIDE TELEPHONE AND ONLINE SUPPORT. THE CUREPSP FORUM ALLOWS PEOPLE AFFECTED BY THE DISEASES TO SHARE INFORMATION AND SUPPORT. 5. HELD TWO FAMILY CONFERENCES A YEAR ATTRACTING MORE THAN 100 PATIENTS AND FAMILIES TO EACH. 6. PUT ON CAREGIVER CONFERENCES AND PROFESSIONAL EDUCATION MEETINGS. 7. PROVIDED GRANTS TO FAMILIES FOR PROFESSIONAL IN-HOME CARE. 8. RECRUITED PATIENTS FOR CLINICAL TRIALS AND MARKETS THE TRIALS. 9. PUBLISHED A LIBRARY OF PRINTED AND ONLINE INFORMATION AND PROVIDED TELEPHONE SUPPORT. FORM 990, PAGE 2, PART III, LINE 4D GOALS OF THE PATIENT ENGAGEMENT PROGRAM: ACCELERATING CLINICAL TRIALS TO DEVELOP TREATMENTS AND DISCOVER CURES FOR RARE DISEASES. FORM 990, PAGE 6, PART VI, LINE 2 WILLIAM MCFARLAND ILEEN MCFARLAND CHAIR DIRECTOR SPOUSAL FORM 990, PAGE 6, PART VI, LINE 3 ORGANIZATION CONTRACTED CPA TO SERVE AS OUTSOURCE CFO FORM 990, PAGE 6, PART VI, LINE 11B 990 IS PROVIDED TO THE FINANCE COMMITTEE FOR REVIEW AND APPOVAL. THE FORM IS THEN PROVIDED TO THE BOARD FOR A PERIOD TO MAKE COMMENTS BEFORE FILING FORM 990, PAGE 6, PART VI, LINE 12C EXECUTIVE DIRECTOR REVIEWS FORMS FORM 990, PAGE 6, PART VI, LINE 15A BOARD DISCUSSED PERFORMANCE AND USES SALARY DATA TO DETERMINE. PERIODICAL LY THE BOARD ALSO OBTAINS AN INDEPENDENT COMPENSATION STUDY TO DETERMINE SALARY LEVELS. FORM 990, PAGE 6, PART VI, LINE 15B PRESIDENT-CEO PERFORMS ANNUAL EMPLOYEE REVIEWS AND APPROVES INCREASES WITH IN THE SCOPE OF AN ANNUAL BUDGET. THE ORGANIZATION PERIODICALLY OBTAINS S ALARY REVIEWS FROM AN OUTSIDE CONSULTANT TO VERIFY THAT THE SALARIES ARE WITHIN A COMPETITIVE RANGE. FORM 990, PAGE 6, PART VI, LINE 17 LOUISIANA, MARYLAND, MAINE, MASSACHUSETTS, MICHIGAN, MINNESOTA, MISSISSIPPI, MISSOURI, NEVADA, NEW HAMPSHIRE, NEW JERSEY, NEW MEXICO, NEW YORK, NORTH CAROLINA, NORTH DAKOTA, OHIO, OKLAHOMA, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, TEXAS, UTAH, VIRGINIA, WASHINGTON, WEST VIRGINIA, WISCONSIN FORM 990, PAGE 6, PART VI, LINE 19 UPON REQUEST PATIENT ENGAGEMENT PROGRAM LLC 1216 BROADWAY 2ND FLOOR NEW YORK NY 10001 474679085 RESEARCH NY 5545 83062 CURE PSP