2018-05-11T09:33:11-04:00 2017-06-30 521798441 WOLFE & FIEDLER PA 634 FREDERICK RD STE 1 CATONSVILLE MD 21228 990 2016-07-01 521704978 CUREPSP INC CURE 3472942893 1206 YORK ROAD STE L-4 LUTHERVILLE MD 21093 DAVID KEMP PRESIDENT 3472942893 2018-05-10 true JOHN R FIEDLER P00147612 4107470789 2018-05-11 2016 2022-09-23 18:48:47Z X DAVID KEMP 1206 YORK ROAD LUTHERVILLE MD 21093 2797290 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 17 180 0 3119335 2577806 101521 106430 5459 9566 -2494 10980 3223821 2704782 477501 329500 0 1165951 930159 0 466301 1508769 1097564 3152221 2357223 71600 347559 3162762 3074588 936756 466427 2226006 2608161 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 741950 329500 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. 527273 88800 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. 273786 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. 17040 17630 GOALS OF THE PATIENT ENGAGEMENT PROGRAM: ACCELERATING CLINICAL TRIALS TO DEVELOP TREATMENTS AND DISCOVER CURES FOR RARE DISEASES. 17040 17630 1560049 true true false false false false false false false true true false false false false false true true false false false false false false true false false true false true false false false false false true false true false false false false true false false false false true 28 0 17 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 3472942893 1206 YORK ROAD STE L-4 LUTHERVILLE MD 21093 EVERETT COOK VICE CHAIR 2.00 X X 0 0 0 ADAM MURPHY DIRECTOR 2.00 X 0 0 0 ILEEN MCFARLAND DIRECTOR 2.00 X 0 0 0 JOHN BURHOE CHAIR EMERIT 2.00 X 0 0 0 LAWRENCE GOLBE DIRECTOR 2.00 X 0 0 0 AMY BRANCH DIRECTOR 2.00 X 0 0 0 BRENDAN DIXON SECRETARY 2.00 X X 0 0 0 GEORGE JANKIEWICZ TREASURER 2.00 X X 0 0 0 STEPHEN GOLDMAN DIRECTOR 2.00 X 0 0 0 WILLIAM MCFARLAND CHAIR 2.00 X X 0 0 0 JEFFREY FRIEDMAN DIRECTOR 2.00 X 0 0 0 JIM MCCLELLAN DIRECTOR 2.00 X 0 0 0 JAMES SHEA DIRECTOR 2.00 X 0 0 0 DAVID KEMP PRESIDENT 45.00 X 200000 0 0 200000 1 false true false 183016 2394790 2577806 SPONSORSHIPS 88800 88800 PATIENT ENGAGEMENT PROGRAM 17630 17630 106430 10394 10394 73153 73340 641 -187 -641 -828 -828 23024 183016 16640 6384 6384 5993 1887 4106 4106 OTHER 490 490 490 2704782 110198 16778 329500 329500 200000 135260 35860 28880 621904 431479 97203 93222 13754 9343 2443 1968 33375 22672 5930 4773 61126 41523 10856 8747 49153 13226 35927 37974 37974 3270 3270 4993 4993 12026 11957 69 329010 108327 2332 218351 67788 36523 2720 28545 145318 84489 34772 26057 6411 235 6176 168896 168896 51390 35157 8991 7242 12217 9157 1695 1365 MEETINGS & BOARD EXPENSES 25491 3648 21843 BANK & PAYROLL FEES 23783 15 7198 16570 BRAIN BANK TISSUE HARVEST 21989 21989 SUPPORT GROUPS 20866 20866 116989 67524 18884 30581 2357223 1560049 330873 466301 1064908 895681 1475532 1478278 3850 4650 13104 22920 20382 34854 50959 293244 134457 36859 158787 388290 427158 145365 15773 3162762 3074588 169646 112387 767110 354040 936756 466427 X 1311405 1749321 542483 455396 372118 403444 2226006 2608161 3162762 3074588 347559 34596 X false true X true false X 1583318 3115827 2521513 3119335 2577806 12917799 141364 210083 212132 105518 112913 782010 1724682 3325910 2733645 3224853 2690719 13699809 167351 1495316 956514 50696 138765 2808642 167351 1495316 956514 50696 138765 2808642 10891167 8418 10945 12746 15298 10394 57801 8418 10945 12746 15298 10394 57801 1733100 3336855 2746391 3240151 2701113 13757610 0.79160 0.79530 0.00000 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 372118 34596 3270 403444 380827 -5591 3118 372118 383411 529 3113 380827 351169 35179 2937 383411 325369 29537 3737 351169 false false 293244 134457 158787 158787 2739378 34596 34596 2704782 2704782 2357223 2357223 2357223 SCHEDULE D, PAGE 2, PART V, LINE 4 INCOME IS USED TO SUPPORT PSP RESEARCH BY STUDENTS All States HILL COUNTRY WI 36148 28918 7230 1400 MARCO ISLAND WA 35730 26798 8932 6589 5 51551 44689 6862 942 4005 2820 123429 100405 23024 942 4005 10809 15756 7268 true COLUMBIA UNIVERSITY 630 WEST 68TH STREET NEW YORK NY 10032 135598093 501C3 44000 PRECLINICAL RESEARCH REGENERATIVE RESEARCH FOUNDATION ONE DISCOVERY DRIVE RENSELAER NY 12144 203654626 501C3 40000 PRECLINICAL RESEARCH NYU SCHOOL OF MEDICINE PO BOX 415026 BOSTON MA 022415026 135562308 501C3 83500 PRECLINICAL RESEARCH HUMBOLDT STATE UNIVERSITY 1 HARPST STREET ARCATA CA 955218299 946050071 501C3 100000 PRECLINICAL RESEARCH MOUNT SINAI SCHOOL OF MEDICINE 1425 MADISON AVENUE NEW YORK NY 10029 136171197 501C3 12000 PRECLINICAL RESEARCH TEACHERS COLL COLUMBIA UNIVERSITY 525 WEST 120TH STREET NEW YORK NY 100276696 131624202 501C3 50000 PRECLINICAL RESEARCH X false false false false false false false false false DAVID KEMP PRESIDENT 200000 200000 WOLFE FIEDLER PA CPA 28800 ACCOUNTING & CONSULT 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 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 S ALARY 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 W ITHIN 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 404 5TH AVENUE 3RD FLOOR NEW YORK NY 10018 474679085 RESEARCH NY 17630 19092 CURE PSP