2017-09-11T12:18:08-05:00 2016-12-31 131655065 LUTZ AND CARR CPAS LLP 551 FIFTH AVENUE SUITE 400 NEW YORK NY 10176 990 2016-01-01 582492929 LUPUS RESEARCH ALLIANCE INC F/K/A ALLIANCE FOR LUPUS RESEARCH INC LUPU 2122182840 275 MADISON AVE 10TH FLOOR NEW YORK NY 10016 DEBRA ROSE CHIEF FIN. AND ADMIN. OFFICER 2122182840 2017-09-08 1 LAUREN CRESCI P01268493 2126972299 2016 2022-09-23 18:48:47Z KENNETH M FARBER 275 MADISON AVE 10TH FLOOR NEW YORK NY 10016 55917648 0 X LUPUSRESEARCH.ORG X 1999 NY SEE SCHEDULE OTHE MISSION OF LUPUS RESEARCH ALLIANCE (LRA) IS TO SUPPORT BIO-MEDICAL RESEARCH TO PREVENT, TREAT AND CURE LUPUS. 17 17 35 500 0 0 15274909 19101537 0 0 3299578 -850998 224378 19588 18798865 18270127 9031864 18737789 0 0 2242797 3323432 49000 49000 2724883 3858750 4991682 15182411 27101903 3616454 -8831776 63114028 67639535 14893239 22480616 48220789 45158919 X THE LUPUS RESEARCH ALLIANCE UNITES THE GLOBAL LUPUS COMMUNITY IN BOLD DETERMINATION TO FREE THE WORLD OF LUPUS THROUGH THE POWER OF SCIENCE. WE WILL TRANSFORM THE LIVES OF PEOPLE AFFECTED BY LUPUS AS WE WELCOME AND EMBRACE A NEW SCIENTIFIC ERA, PIONEER INNOVATION, PUSH THE FRONTIERS OF KNOWLEDGE, ENLIST DIVERSE NEW SCIENTIFIC TALENT, AND LEAD THE DRIVE TO NEW TREATMENTS, PREVENTION AND CURE. 1 0 17760597 17097789 RESEARCH:THE LRA ENGAGES IN ACTIVE GRANT MAKING MANAGEMENT, WORKING HAND-IN-HAND WITH INVESTIGATORS TO GUIDE AND DRIVE THE RESEARCH PROCESS. SINCE ITS INCEPTION, THE LRA HAS COMMITTED OVER $173 MILLION TO FUND LUPUS RESEARCH PROJECTS. IN 2016, GRANTS TOTALING $17 MILLION WERE AWARDED UNDER FOUR MAIN GRANT MECHANISMS: 1) 7 NEW LEGACY ALR TARGET IDENTIFICATION IN LUPUS (TIL) THREE YEAR GRANT MECHANISM FOR OVER $4 MILLION; 2) 10 NEW NOVEL LEGACY LRI GRANTS FOR $3 MILLION OVER THREE YEARS;CONTINUES ON SCHEDULE O.3) 3 DISTINGUISHED INNOVATOR AWARDS (DIA) FOR $2 MILLION OVER 2 TO 4 YEARS4) JOINT LRA-CTI GRANTS WERE AWARDED FOR $1.1 MILLION OVER ONE YEAR5) DUE TO THE MERGER OF THE LUPUS RESEARCH INSTITUTE INTO THE ALR THERE WAS ALSO AN ACCRUAL FOR LEGACY DIA AND NOVEL LRI GRANTS FOR NEARLY $7 MILLION.LRA'S UNIQUE FUNDING MODEL SUPPORTS PROMISING RESEARCH EFFORTS WITH THE GOAL OF IMPROVING THE LIVES OF PEOPLE WITH LUPUS IN THE NEAR FUTURE. THROUGH A COMPETITIVE PEER-REVIEW PROCESS AND AN INNOVATIVE VENTURE-CAPITALIST APPROACH, PROJECTS BY THE LRA AIM TO TRANSLATE RESULTS FROM THE RESEARCH BENCH TO THE BEDSIDE AS QUICKLY AS POSSIBLE. BECAUSE THE LRA'S BOARD OF DIRECTORS FUNDS ADMINISTRATIVE AND FUNDRAISING EXPENSES, 100% OF ALL OTHER CONTRIBUTIONS GOES TO SUPPORT THE LRA'S LUPUS RESEARCH PROGRAMS. 3943902 1640000 SCIENTIFIC PROGRAMS:THE LRA ENCOURAGES CROSS-SECTOR AND CROSS-DISCIPLINE PARTNERSHIPS TO FOSTER AN INNOVATIVE RESEARCH ENVIRONMENT. IN 2016, THERE WERE COLLABORATIVE MEETINGS FUNDED BY THE LRA WHERE RESEARCHERS WERE ENCOURAGED TO EXCHANGE IDEAS AND HELP THE LRA TARGET NEW RESEARCH OPPORTUNITIES. THIS INCLUDED THE ANNUAL 2 DAY FORUM FOR DISCOVERY, SCIENTIFIC ADVISORY BOARD MEETINGS, LUPUS INDUSTRY COUNCIL MEETINGS, AND LUPUS CLINICAL INVESTIGATORS NETWORK (LUCIN) MEETINGS. CONTINUES ON SCHEDULE O.IN 2016, THE LRA FULLY FORMED LUCIN TO RUN "PROOF OF CONCEPT" CLINICAL TRIALS TO EVALUATE WHETHER NEW TREATMENTS WILL IMPROVE THE OUTCOME IN PATIENTS WITH LUPUS UNDER THE DRUG REPOSITIONING PROGRAM. WE WILL BE BUILDING ALLIANCES AND PARTNERSHIPS WITH COMPANIES, ORGANIZATIONS, AND INDIVIDUALS WHO ARE WILLING TO ASSIST LRA IN REALIZING THE GREAT POTENTIAL OF THIS PROGRAM. OVER THE NEXT 5 YEARS WE WILL RUN MULTIPLE CLINICAL TRIALS WITH MEDICINES THAT LOOK THE MOST PROMISING. IN 2016, 3 "PROOF OF CONCEPT" CLINICAL TRIALS WERE INITIATED IN APPROXIMATELY 60 TRIAL SITES THROUGHOUT THE UNITED STATES AND CANADA AND 2-3 MORE ARE EXPECTED IN 2017.A LUCIN GOVERNANCE STRUCTURE HAS BEEN DEVELOPED TO PROVIDE AN INITIAL FRAMEWORK TO OPERATIONALIZE NETWORK ACTIVITIES AND FACILITATE LUPUS COMMUNITY INVOLVEMENT. THE GOVERNANCE STRUCTURE IS COMPRISED OF LUCIN INVESTIGATORS AND PATIENTS, COVERING A DIVERSE RANGE OF INTEREST AND EXPERTISE, WITH THE SINGULAR FOCUS OF IDENTIFYING AND ACCELERATING THE DEVELOPMENT OF NEW AND SAFER TREATMENTS FOR LUPUS PATIENTS. UP TO 90% OF THE PEOPLE WITH LUPUS ARE WOMEN AND THE DISORDER IS THREE TIMES MORE PREVALENT IN AFRICAN AMERICAN WOMEN THAN ANY OTHER GROUP. PATIENT RECRUITMENT WILL BE THE MOST CRITICAL ELEMENT IN THE SUCCESS OF THIS PROGRAM. A PATIENT ADVOCATES IN LUPUS PROGRAM IS ALSO BEING CREATED AS AN ADJUNCT TO LUCIN TO ASSIST WITH PATIENT RECRUITMENT. 541256 PUBLIC POLICY:THE MAIN GOALS OF THE LRA'S PUBLIC POLICY PROGRAM ARE TO EDUCATE MEMBERS OF CONGRESS AND THE ADMINISTRATION ABOUT THE IMPORTANCE OF FUNDING LUPUS RESEARCH, TO INCREASE FEDERAL FUNDING FOR LUPUS RESEARCH BY INCREASING OVERALL NATIONAL INSTITUTES OF HEALTH (NIH) FUNDS, AND TO SECURE ADDITIONAL FUNDING FOR LUPUS RESEARCH THROUGH OTHER KEY FEDERAL AGENCIES INCLUDING THE VETERANS ADMINISTRATION AND DEPARTMENT OF DEFENSE. VOLUNTEERS ACROSS THE COUNTRY HELP US WITH THESE OUTREACH EFFORTS.CONTINUES ON SCHEDULE O.THROUGH THE LRA'S PUBLIC POLICY PROGRAM EFFORTS, FUNDING FOR LUPUS RESEARCH HAS BEEN OBTAINED UNDER THE DEPARTMENT OF DEFENSE PEER REVIEWED MEDICAL RESEARCH PROGRAM. THIS IS A $50 MILLION COMPETITIVE RESEARCH GRANT PROGRAM. ONLY THOSE DISEASES LISTED IN THE DEFENSE APPROPRIATIONS COMMITTEE REPORT ARE ELIGIBLE TO RECEIVE FUNDING. LRA WAS RESPONSIBLE FOR PERSUADING CONGRESS TO INCLUDE LUPUS ON THIS VERY COMPETITIVE LIST THE PAST TEN YEARS. IN ADDITION, THERE IS NOW $5 MILLION EARMARKED SPECIFICALLY FOR LUPUS IN FY17 AND THROUGH THE LRA'S CONTINUED EFFORTS, THE APPROPRIATIONS BILL FOR FY18 PROVIDES AN ADDITIONAL $5 MILLION FOR THE LUPUS MEDICAL RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE (DOD), BRINGING THE TOTAL TO $10 MILLION OVER TWO YEARS.IN 2016, THE LUPUS PATIENT-FOCUSED DRUG DEVELOPMENT (PFDD) INITIATIVE - BRINGING THE VOICE OF THE PATIENT TO DRUG DEVELOPMENT WAS INITIATED. THIS COLLABORATIVE EFFORT WITH THE LUPUS AND ALLIED DISEASES ASSOCIATION (LADA) AND LUPUS FOUNDATION OF AMERICA (LFA) IS A GROUNDBREAKING INITIATIVE DESIGNED TO PROVIDE THE FOOD AND DRUG ADMINISTRATION (FDA) WITH PERSPECTIVES FROM PEOPLE WITH LUPUS, ADVOCATES AND CAREGIVERS TO HELP INFORM THE FDA'S DECISIONS AND OVERSIGHT DURING THE DRUG DEVELOPMENT AND REVIEW PROCESSES. A MAJOR LAUNCH TO THE LUPUS COMMUNITY IS PLANNED FOR MAY 2017 WITH THE MEETING IN FALL 2017. IN ADDITION, ADVOCACY FOR THE CONTINUED AVAILABILITY OF QUINACRINE WAS A PRIORITY IN 2016. THE FOOD AND DRUG ADMINISTRATION (FDA) IS ASSESSING ALL COMPOUNDED PHARMACEUTICALS THROUGH THEIR PHARMACY COMPOUNDING ADVISORY COMMITTEE (PCAC). IN THE SPRING, THE COMMITTEE VOTED TO RECOMMEND TAKING QUINACRINE OFF THE COMPOUNDING PHARMACY LIST. IN OCTOBER LRA MET WITH THE DR. JANET WOODCOCK, DIRECTOR, CENTER FOR DRUG EVALUATION AND RESEARCH, AND A LARGE TEAM AT FDA TO DISCUSS WAYS TO KEEP QUINACRINE AVAILABLE TO PEOPLE WITH LUPUS IN A WAY THAT IS ACCEPTABLE TO THE FDA. WE ARE LOOKING INTO THOSE OPTIONS. 22245755 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 0 1 0 0 0 1 1 0 1 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 54 0 1 35 1 0 0 0 0 0 1 1 0 0 0 0 X 17 17 1 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN VA WA WV WI X X X DEBRA ROSE 6468848000 275 MADISON AVE 10 FLOOR NEW YORK NY 10016 ROBERT WOOD JOHNSON IV CHAIRMAN OF THE BOARD 1.00 X X 0 0 0 RICHARD K DESCHERER VICE CHAIR 1.00 X X 0 0 0 ROBERT RAVITZ SECRETARY 1.00 X X 0 0 0 JOSEPH MAURIELLO TREASURER 1.00 X X 0 0 0 IRA AKSELRAD DIRECTOR 1.00 X 0 0 0 NEIL J BURMEISTER DIRECTOR 1.00 X 0 0 0 JERMOME CHAZEN DIRECTOR 1.00 X 0 0 0 JENNIE DESCHERER DIRECTOR 1.00 X 0 0 0 SIR MARC FELDMANN DIRECTOR 1.00 X 0 0 0 DANIEL LAVECCHIA DIRECTOR 1.00 X 0 0 0 LOUIS LUCIDO DIRECTOR 1.00 X 0 0 0 WILLIAM J MULVIHILL DIRECTOR 1.00 X 0 0 0 ROBERT W PITTMAN DIRECTOR 1.00 X 0 0 0 FERN TESSLER DIRECTOR 1.00 X 0 0 0 KEITH C WOLD DIRECTOR 1.00 X 0 0 0 WILLIAM WOLFE DIRECTOR 1.00 X 0 0 0 CAROL WIESMAN DIRECTOR 1.00 X 0 0 0 KENNETH M FARBER CO-CEO AND CO-PRESIDENT 40.00 X 300181 0 59806 MARGARET P DOWD CO-CEO AND CO-PRESIDENT 40.00 X 107105 0 20094 DEBRA ROSE CHIEF FIN. 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PRINCIPAL TO REMAIN INTACT UNLESS HIGH PRIORITY LUPUS RESEARCH PROJECTS NEED TO BE FUNDED THAT COULD NOT BE FUNDED OTHERWISE. PART XII, LINE 4B - OTHER ADJUSTMENTS: RETURN OF GRANTS & ADJUSTMENTS 1,876. PART XI, LINE 4B AND PART XII, LINE 4B UNUSED PORTIONS OF GRANTS RETURNED TO ALR THAT WERE PAID IN PREVIOUS YEARS IN THE AMOUNT OF $1,876. THESE AMOUNTS ARE RECONCILING ITEMS BETWEEN THE REVENUE AND EXPENSES FROM THE AUDITED FINANCIAL STATEMENTS AND THOSE REPORTED ON FORM 990. SCHEDULE D PART VI, LINE 1A - LAND HELD FOR RESALE IN DECEMBER 2006, THE ORGANIZATION RECEIVED A DONATION OF LAND AND BUILDING CURRENTLY VALUED AT $1,725,928 WHICH IS BEING HELD FOR RESALE. 1 EAST ASIA AND THE PACIFIC 0 0 PROGRAM SERVICES GRANTS TO RECIPIENTS 1336445 NORTH AMERICA 0 0 PROGRAM SERVICES GRANTS TO RECIPIENTS 320000 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICES GRANTS TO RECIPIENTS 250000 0 0 0 0 0 0 1906445 0 1906445 EAST ASIA AND THE PACIFIC LUPUS RESEARCH 336445 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK EAST ASIA AND THE PACIFIC LUPUS RESEARCH 250000 CHECK BOOK EAST ASIA AND THE PACIFIC LUPUS RESEARCH 750000 CHECK BOOK EUROPE (INCLUDING ICELAND AND GREENLAND) LUPUS RESEARCH 250000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK NORTH AMERICA LUPUS RESEARCH 40000 CHECK BOOK 10 0 0 0 0 0 0 PART I, LINE 2: BEFORE A GRANT IS AWARDED, THE INSTITUTION MUST AGREE TO THE TERMS AND CONDITIONS OUTLINED IN THE LRA'S POLICY STATEMENT FOR RESEARCH GRANTS THAT INCLUDE: - CONFIRMATION BY THE PRINCIPAL INVESTIGATOR (PI) AND THE INSTITUTION THAT FUNDS WILL ONLY BE USED AS DESCRIBED IN THE APPLICATION SUBMITTED AND APPROVED FOR FUNDING. - AGREE THAT PI AND SPONSORING INSTITUTION ARE BOTH RESPONSIBLE FOR INSURING THAT ALL RESEARCH ACTIVITIES ARE CONDUCTED IN A SAFE, RESPONSIBLE AND ETHICAL MANNER. - AGREE TO GET APPROVAL FROM THE LRA IF THERE NEEDS TO BE A SIGNIFICANT CHANGE TO THE BUDGET AS SUBMITTED. - AGREE TO GET APPROVAL FROM THE LRA IF ADDITIONAL TIME IS NEEDED TO COMPLETE THE PROJECT WORK. - AGREE TO SUBMIT ALL DELIVERABLES AND REPORTS AS SCHEDULED: (A) ANNUAL PROGRESS REPORTS AND (B) ANNUAL BUDGET RECONCILIATION IS REQUIRED. THE PI AND A REPRESENTATIVE FROM THE INSTITUTION MUST SUBMIT THE FOLLOWING: A SIGNED LETTER OF ACCEPTANCE CONFIRMING THE FOLLOWING: A. PI'S WILLINGNESS TO ADHERE TO THE TERMS OF THE BUDGET AS OUTLINED IN THE FUNDING LETTER. B. PI'S WILLINGNESS TO COMPLY WITH ALL OF THE CONDITIONS OUTLINED IN THE POLICY STATEMENT FOR RESEARCH GRANTS AND PATENT AND INTELLECTUAL PROPERTY POLICY. C. THERE IS NO OVERLAPPING SOURCE OF SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THIS GRANT. OTHER FUNDING THAT MIGHT BE CONSTRUED AS OVERLAPPING, MUST BE EXPLAINED IN DETAIL. D. THE FOLLOWING STATEMENT SHOULD APPEAR AT THE CONCLUSION OF THE LETTER OF ACCEPTANCE, "I AGREE TO ACCEPT RESPONSIBILITY FOR THE SCIENTIFIC AND TECHNICAL CONDUCT OF THE RESEARCH PROJECT AND FOR THE PROVISION OF ALL PROGRESS REPORTS REQUIRED FROM INVESTIGATORS FUNDED BY A GRANT FROM THE LUPUS RESEARCH ALLIANCE." - IF AN EXTENSION IS AWARDED ADDITIONAL INTERIM PROGRESS REPORTS AND BUDGET RECONCILIATIONS ARE REQUIRED TO BE SUBMITTED. - AT THE END OF THE GRANT A FINAL PROGRESS REPORT AND BUDGET RECONCILIATION IS REQUIRED TO BE SUBMITTED, UNSPENT AMOUNTS ARE TO BE RETURNED TO THE LRA. ALL INSTITUTIONS RECEIVE A PAYMENT AND DELIVERABLE SCHEDULE AND THE PROJECT IS MONITORED BY: - PERIODIC PROGRESS REPORTS - PERIODIC BUDGET RECONCILIATIONS - ALL PUBLICATIONS RELATED TO THE GRANT ARE TO BE SUBMITTED TO THE LRA X X X X X 1 DS CONSULTING GROUP 845 THIRD AVENUE 6TH FLOOR NEW YORK NY 10022 SPECIAL EVENT CONSULTANT 1 2293340 49000 2293340 2293340 49000 2293340 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX VT VA WA WV WI WY GALA CELEBRATION 3015898 2614673 401225 280959 8000 112266 WALK-A-THONS 2058564 2037251 21313 21313 1 371748 371748 5446210 5023672 422538 280959 8000 133579 422538 0 SCHEDULE G, PART I, LINE 2B, COLUMN (V) DS CONSULTING PLANNED AND MANAGED ALR'S GALA EVENT. CONTRACT AMOUNT FOR THE PERIOD COVERING 1/1/16 - 12/31/16 WAS $49,000 PLUS REIMBURSABLE EXPENSES. 1 UNIVERISTY OF CALIFORNIA LOS ANGELES BOX 951432 1125 MURPHY HALL 405 HILGARD AVENUE LOS ANGELES CA 90095 956006143 501(C)(3) 8095 BOOK LUPUS RESEARCH UNIVERSITY OF LOUISVILLE RESEARCH FOUNDATION INC 505 SOUTH HANCOCK ST ROOM 602A LOUISVILLE KY 40202 611029626 501(C)(3) 8242 BOOK LUPUS RESEARCH THE CENTER FOR INFORMATION & STUDY ON CLINICAL RESARCH PARTICPATION 56 COMMERCIAL WHARF EAST BOSTON MA 02110 200588190 501(C)(3) 10000 BOOK LUPUS RESEARCH ALLEGHENYSINGER RESEARCH INSTITUTE 320 E NORTH AVE PITTSBURGH PA 15212 251320493 501(C)(3) 40000 BOOK LUPUS RESEARCH EMORY UNIVERSITY 1762 CLIFTON RD NE ATLANTA GA 30322 580566256 501(C)(3) 40000 BOOK LUPUS RESEARCH NORTHWELL HEALTH - DIVISION OF RHEUMATOLOGY 972 BRUSH HOLLOW RD 5TH FL WESTBURY NY 11590 112673595 501(C)(3) 40000 BOOK LUPUS RESEARCH OKLAHOMA MEDICAL RESEARCH FOUNDATION 825 NE 13TH STREET OKLAHOMA CITY OK 73104 730580274 501(C)(3) 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CHAPEL HILL NC 27174 566001393 501(C)(3) 200000 BOOK LUPUS RESEARCH UNIVERSITY OF HOUSTON 4800 CALHOUN ROAD CALHOUN ROAD TX 77004 746001399 501(C)(3) 200000 BOOK LUPUS RESEARCH UNIVERSITY OF SOUTHERN CALIFORNIA ZONAL AVEHMR 705 LOS ANGELES CA 90089 951642394 501(C)(3) 208188 BOOK LUPUS RESEARCH UNIVERSITY OF ROCHESTER 518 HYLAN BUILDING ROCHESTER NY 14627 160743209 501(C)(3) 210648 BOOK LUPUS RESEARCH BRIGHAM AND WOMEN'S HOSPITAL INC 4 BLACK FAN CIRCLE BOSTON MA 02115 042312909 501(C)(3) 248243 BOOK LUPUS RESEARCH SEATTLE CHILDREN'S RESEARCH INSTITUTE 1900 NINTH AVENUE SEATTLE WA 98101 910564748 501(C)(3) 285940 BOOK LUPUS RESEARCH THE CHILDREN'S HOSPITAL OF PHILADELPHIA 3535 MARKET STREET PHILADELPHIA PA 19104 231352166 501(C)(3) 285940 BOOK LUPUS RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 285940 BOOK LUPUS RESEARCH FRED HUTCHINSON CANCER RESEARCH CENTER OFFICE OF SPONSORED RESEARCH 1100 FAIRVIEW AVENUE N SEATTLE WA 98109 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SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BOULEVARD DALLAS TX 75390 746000203 TX STATE GOVERNMENT 508357 BOOK LUPUS RESEARCH UNIVERSITY OF VIRGINIA PO BOX 400126 CHARLOTTESVILLE VA 22904 546001796 501(C)(3) 522089 BOOK LUPUS RESEARCH THE FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH 350 COMMUNITY DRIVE MANHASSET NY 11030 112673595 501(C)(3) 598570 BOOK LUPUS RESEARCH UNIVERSITY OF FLORIDA 207 TIGERT HALL GAINESVILLE FL 32611 596000205 FLORIDA STATE GOV 610219 BOOK LUPUS RESEARCH UNIVERSITY OF WASHINGTON 12455 COLLECTIONS DRIVE CHICAGO IL 11042 231365861 501(C)(3) 621882 BOOK LUPUS RESEARCH ST JUDE CHILDRENS RESEARCH HOSPITAL 333 MEADOWLANDS PARKWAY SECAUCUS NJ 07094 620646012 501(C)(3) 800000 BOOK LUPUS RESEARCH UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL 55 LAKE AVE WORCESTER MA 01655 043167325 MA STATE GOVERNMENT 892274 BOOK LUPUS RESEARCH NEW YORK UNIVERSITY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 135562308 501(C)(3) 942812 BOOK LUPUS RESEARCH TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 1168648 BOOK LUPUS RESEARCH YALE UNIVERSITY PO BOX 208239 NEW HAVEN CT 06520 060646973 501(C)(3) 1441565 BOOK LUPUS RESEARCH 50 1 PART I, LINE 2: BEFORE A GRANT IS AWARDED, THE INSTITUTION MUST AGREE TO THE TERMS AND CONDITIONS OUTLINED IN THE LRA'S POLICY STATEMENT FOR RESEARCH GRANTS THAT INCLUDE: - CONFIRMATION BY THE PRINCIPAL INVESTIGATOR (PI) AND THE INSTITUTION THAT FUNDS WILL ONLY BE USED AS DESCRIBED IN THE APPLICATION SUBMITTED AND APPROVED FOR FUNDING. - AGREE THAT PI AND SPONSORING INSTITUTION ARE BOTH RESPONSIBLE FOR INSURING THAT ALL RESEARCH ACTIVITIES ARE CONDUCTED IN A SAFE, RESPONSIBLE AND ETHICAL MANNER. - AGREE TO GET APPROVAL FROM THE LRA IF THERE NEEDS TO BE A SIGNIFICANT CHANGE TO THE BUDGET AS SUBMITTED. - AGREE TO GET APPROVAL FROM THE LRA IF ADDITIONAL TIME IS NEEDED TO COMPLETE THE PROJECT WORK. - AGREE TO SUBMIT ALL DELIVERABLES AND REPORTS AS SCHEDULED: (A) ANNUAL PROGRESS REPORTS AND (B) ANNUAL BUDGET RECONCILIATION IS REQUIRED. THE PI AND A REPRESENTATIVE FROM THE INSTITUTION MUST SUBMIT THE FOLLOWING: A SIGNED LETTER OF ACCEPTANCE CONFIRMING THE FOLLOWING: A. PI'S WILLINGNESS TO ADHERE TO THE TERMS OF THE BUDGET AS OUTLINED IN THE FUNDING LETTER. B. PI'S WILLINGNESS TO COMPLY WITH ALL OF THE CONDITIONS OUTLINED IN THE POLICY STATEMENT FOR RESEARCH GRANTS AND PATENT AND INTELLECTUAL PROPERTY POLICY. C. THERE IS NO OVERLAPPING SOURCE OF SUPPORT FOR THE SPECIFIC PROJECT THAT IS THE SUBJECT OF THIS GRANT. OTHER FUNDING THAT MIGHT BE CONSTRUED AS OVERLAPPING, MUST BE EXPLAINED IN DETAIL. D. THE FOLLOWING STATEMENT SHOULD APPEAR AT THE CONCLUSION OF THE LETTER OF ACCEPTANCE, "I AGREE TO ACCEPT RESPONSIBILITY FOR THE SCIENTIFIC AND TECHNICAL CONDUCT OF THE RESEARCH PROJECT AND FOR THE PROVISION OF ALL PROGRESS REPORTS REQUIRED FROM INVESTIGATORS FUNDED BY A GRANT FROM THE LUPUS RESEARCH ALLIANCE." - IF AN EXTENSION IS AWARDED ADDITIONAL INTERIM PROGRESS REPORTS AND BUDGET RECONCILIATIONS ARE REQUIRED TO BE SUBMITTED. - AT THE END OF THE GRANT A FINAL PROGRESS REPORT AND BUDGET RECONCILIATION IS REQUIRED TO BE SUBMITTED, UNSPENT AMOUNTS ARE TO BE RETURNED TO THE LRA. ALL INSTITUTIONS RECEIVE A PAYMENT AND DELIVERABLE SCHEDULE AND THE PROJECT IS MONITORED BY: - PERIODIC PROGRESS REPORTS - PERIODIC BUDGET RECONCILIATIONS - ALL PUBLICATIONS RELATED TO THE GRANT ARE TO BE SUBMITTED TO THE LRA X X X X X 0 0 0 0 0 0 0 0 0 KENNETH M FARBER CO-CEO AND CO-PRESIDENT 300181 0 0 0 0 0 21200 0 38606 0 359987 0 0 0 DEBRA ROSE CHIEF FIN. AND ADMIN. OFFICER 150534 0 0 0 0 0 13864 0 18798 0 183196 0 0 0 ROBERT D HINNEN SENIOR DIRECTOR OF PHILANTHROPY 124339 0 0 0 0 0 12259 0 16275 0 152873 0 0 0 JONATHAN MARKS SENIOR REGIONAL DEVELOPMENT DIRECTOR 100376 0 0 0 0 0 13401 0 38611 0 152388 0 0 0 X 9 206337 AVG STOCK VALUE 0 1 1 FORM 990, PART III, LINE 2 PAGE 2, PART III, LINE 2 A LUCIN GOVERNANCE STRUCTURE HAS BEEN DEVELOPED TO PROVIDE AN INITIAL FRAMEWORK TO OPERATIONALIZE NETWORK ACTIVITIES AND FACILITATE LUPUS COMMUNITY INVOLVEMENT. THE GOVERNANCE STRUCTURE IS COMPRISED OF LUCIN INVESTIGATORS AND PATIENTS, COVERING A DIVERSE RANGE OF INTEREST AND EXPERTISE, WITH THE SINGULAR FOCUS OF IDENTIFYING AND ACCELERATING THE DEVELOPMENT OF NEW AND SAFER TREATMENTS FOR LUPUS PATIENTS. UP TO 90% OF THE PEOPLE WITH LUPUS ARE WOMEN AND THE DISORDER IS THREE TIMES MORE PREVALENT IN AFRICAN AMERICAN WOMEN THAN ANY OTHER GROUP. PATIENT RECRUITMENT WILL BE THE MOST CRITICAL ELEMENT IN THE SUCCESS OF THIS PROGRAM. A PATIENT ADVOCATES IN LUPUS PROGRAM IS ALSO BEING CREATED AS AN ADJUNCT TO LUCIN TO ASSIST WITH PATIENT RECRUITMENT. FORM 990, PART VI, SECTION A, LINE 2 1. NEIL J. BURMEISTER (DIRECTOR), IRA AKSELRAD (DIRECTOR) AND ROBERT WOOD JOHNSON, IV, (CHAIRMAN OF THE BOARD), HAVE A BUSINESS RELATIONSHIP. 2. ROBERT WOOD JOHNSON IV (CHAIRMAN OF THE BOARD) AND ROBERT PITTMAN (DIRECTOR) HAVE A BUSINESS RELATIONSHIP. FORM 990, PART VI, SECTION A, LINE 4 ON JULY 1, 2016 TWO LUPUS ORGANIZATIONS; THE SLE LUPUS FOUNDATION AND THE LUPUS RESEARCH INSTITUTE MERGED WITH AND INTO THE ALLIANCE FOR LUPUS RESEARCH HENCEFORTH KNOWN AS LUPUS RESEARCH ALLIANCE. NEW ARTICLES OF INCORPORATION AND BYLAWS WENT INTO EFFECT WITH THE MERGER DATE OF JULY 1, 2016. FORM 990, PART VI, SECTION B, LINE 11B AFTER PREPARATION BY OF FORM 990 BY LRA'S AUDITOR, LUTZ AND CARR, THE 990 IS REVIEWED BY THE LRA'S SENIOR OFFICERS, THE CHIEF FINANCE AND ADMINISTRATIVE OFFICER AND THE PRESIDENT. THE FINANCE AND AUDIT COMMITTEE OF THE BOARD THEN MEETS TO REVIEW THE 990 BEFORE FILING AND APPROVES FOR FILING WITH ANY NOTED CHANGES. A DRAFT OF THE 990 IS THEN SENT OUT TO THE FULL BOARD FOR COMMENT PRIOR TO FILING WITH THE IRS. THE FINAL FORM 990 IS PRESENTED TO THE FULL BOARD AT THE SEPTEMBER MEETING. FORM 990, PART VI, SECTION B, LINE 12C THE GOVERNANCE COMMITTEE OF THE BOARD IS RESPONSIBLE FOR MONITORING CONFLICTS OF INTEREST. AN ANNUAL CONFLICT OF INTEREST DISCLOSURE FORM IS REQUIRED TO BE FILLED OUT EACH YEAR BY BOARD MEMBERS, OFFICERS AND KEY EMPLOYEES. FORM 990, PART VI, SECTION B, LINE 15 THE EXECUTIVE COMMITTEE OF THE BOARD OF DIRECTORS ASSISTED THE BOARD IN FULFILLING ITS OVERSIGHT RESPONSIBILITIES RELATING TO THE COMPENSATION AND BENEFITS OF THE PRESIDENT AND OTHER EXECUTIVE OFFICERS; AND PROVIDED RECOMMENDATIONS REGARDING MANAGEMENT SUCCESSORS. ANNUALLY THE COMMITTEE REVIEWS AND RECOMMENDS TO THE BOARD THE SALARY FOR THE PRESIDENT AND OTHER OFFICERS/KEY EMPLOYEES. IN 2016, THE COMMITTEE REVIEWED AND APPROVED BASE SALARIES AND ANNUAL MERIT ADJUSTMENTS FOR ALL STAFF. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST AND ON GUIDESTAR.ORG FORM 990, PART XI, LINE 9: RETURN OF UNSPENT GRANT FUNDS 1,876. FORM 990, PART V, QUESTION 2A THE LRA CONTRACTS WITH TRINET AMBROSE, A PROFESSIONAL EMPLOYER ORGANIZATION (PEO), TO PROVIDE PAYROLL AND BENEFITS AS A CO-EMPLOYER WITH THE LRA. LRA PAYROLL AND BENEFITS ARE ADMINISTERED BY AMBROSE AS APPROVED BY LRA OFFICERS. LRA PAYROLL IS THEREFORE UNDER THE AMBROSE EIN: 13-3867443 AND W-2'S ARE PREPARED UNDER THAT EIN BY TRINET AMBROSE.