2019-03-11T08:24:27-05:00 2018-09-30 111986323 MARCUM LLP 1899 L STREET NW SUITE 850 WASHINGTON DC 20036 990 2017-10-01 431131436 THE LUPUS FOUNDATION OF AMERICA INC LUPU 2023491155 2121 K STREET NW NO 200 WASHINGTON DC 20037 SEUNG-AE CHUNG CHIEF FINANCIAL OFFICER 2023491155 2019-03-07 1 FRANK H SMITH P00639053 2022274000 47.19.127.190 2019-03-07 14:59:00 ES P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 283714205276AA39147BD1B708D29006EA201FE5 2017 2019-02-21 02:37:17Z STEVAN W GIBSON 2121 K STREET NW NO 200 WASHINGTON DC 20037 19075253 0 X WWW.LUPUS.ORG X 1977 DC IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS THROUGH RESEARCH, EDUCATION, SUPPORT AND ADVOCACY. 20 20 58 2985 0 12201 12484585 13324163 1137886 2989013 18188 40931 -5227 -22590 13635432 16331517 573295 1313346 0 0 4900430 5687990 105703 96850 2580452 7676712 8527462 13256140 15625648 379292 705869 8329175 9520522 3879596 4275401 4449579 5245121 X THE LUPUS FOUNDATION OF AMERICA, INC. (THE FOUNDATION) IS DEDICATED TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS THROUGH PROGRAMS OF RESEARCH, EDUCATION, SUPPORT, AND ADVOCACY. 0 0 5741758 1754794 PUBLIC INFORMATION AND EDUCATION: THE LUPUS FOUNDATION OF AMERICA (THE FOUNDATION) EXECUTES ONGOING EFFORTS TO INCREASE PUBLIC AWARENESS AND UNDERSTANDING OF LUPUS AND ITS HEALTH CONSEQUENCES AS A TOOL TO IMPROVE EARLY DIAGNOSIS AND TREATMENT OF THE DISEASE. ONGOING EFFORTS INCLUDES PUBLIC AWARENESS CAMPAIGNS, MEDIA RELATIONS, ONLINE AND SOCIAL MARKETING, AND OUTREACH EFFORTS TO BUILD AND ENHANCE SUSTAINABLE CORPORATE AND COMMUNITY PARTNERSHIPS. THROUGHOUT THIS PAST YEAR, THE FOUNDATION CONTINUED TO EXPAND ITS REACH THROUGH IN-PERSON PROGRAMS, SOCIAL MEDIA PLATFORMS AND THE FOUNDATION'S WEBSITES, ENGAGING CELEBRITIES, AND PROMOTING ITS NATIONAL AWARENESS CAMPAIGN, BE FIERCE.TAKE CONTROL. THIS DIGITAL-BASED CAMPAIGN SEEKS TO REACH YOUNG WOMEN AT GREATEST RISK FOR LUPUS TO RECOGNIZE THE SIGNS OF LUPUS AND TO TAKE ACTION IF THEY ARE EXPERIENCING THEM (WITH THE ULTIMATE GOAL TO REDUCE THE TIME RECEIVING A LUPUS DIAGNOSIS). OUR EFFORTS THIS YEAR RESULTED IN NEARLY 7.4 MILLION IMPRESSIONS AND 70,000 VISITS TO OUR CAMPAIGN WEBSITE TO LEARN MORE. THE FOUNDATION REMAINS THE NUMBER ONE ONLINE SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN AUDIENCE OF 7 MILLION ANNUAL VISITS TO ITS WEBSITE PROPERTIES, AND NEARLY 330,000 FOLLOWERS THROUGH ITS SOCIAL MEDIA PROPERTIES. IN ITS THIRD YEAR OF THE FIVE-YEAR COOPERATIVE AGREEMENT WITH THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), THE FOUNDATION CONTINUES TO RAISE AWARENESS OF THE SIGNS AND SYMPTOMS OF LUPUS AND PROVIDE GUIDANCE ON THE NEXT STEPS TO TAKE IF LUPUS IS SUSPECTED, AS WELL AS INCREASE KNOWLEDGE ON MANAGING LUPUS. SOME KEY ACCOMPLISHMENTS THIS YEAR INCLUDE:- CREATED OR ENHANCED 80 EDUCATIONAL MATERIALS TIED TO UNDERSTANDING, DIAGNOSING, LIVING AND MANAGING LUPUS. EIGHTY-SIX PERCENT (86%) OF THOSE RESOURCES WERE ALSO CREATED IN SPANISH AND SIMPLIFIED CHINESE. - CONTINUED TO GROW OUR ONLINE COMMUNITY, LUPUSCONNECT, WHERE MORE THAN 7,000 PEOPLE WITH LUPUS AND CAREGIVERS MAKE CONNECTIONS AND FIND PRACTICAL INSIGHTS FROM OTHERS.- CREATED IMPROVED USER PATHS TO DIAGNOSTIC CONTENT WITHIN OUR NATIONAL RESOURCE CENTER ON LUPUS RESULTING IN AN 8% INCREASE IN NEW USERS TO CORE CONTENT PAGES.- LAUNCHED TAKE CHARGE, AN 8-WEEK EMAIL SERIES ON MANAGING LUPUS. IN JUST THREE SHORT MONTHS 4,500 USERS SUBSCRIBED TO THE SERIES. 2778787 1279346 675658 RESEARCH: OUR NATIONAL RESEARCH PROGRAM ENTITLED SMART RESEARCH. FASTER PROGRESS SEEKS TO FIND SOLUTIONS TO PROBLEMS THAT FOR DECADES HAVE STALLED PROGRESS IN LUPUS RESEARCH AND HINDERED EFFORTS TO BETTER UNDERSTAND THE DISEASE. WE AGGRESSIVELY PURSUED STRATEGIES TO INCREASE FEDERAL, STATE AND INDUSTRY SUPPORT FOR RESEARCH ON LUPUS, FACILITATED STRATEGIC COLLABORATIONS, AND PROVIDED DIRECT FINANCIAL SUPPORT TO RESEARCHERS THROUGH THE FOUNDATION'S PEER REVIEWED RESEARCH GRANT PROGRAMS. THROUGH OUR DIRECT RESEARCH FUNDING SUPPORT AND VARIOUS RESEARCH INITIATIVES, WE INVESTED NEARLY $2.8 MILLION IN TOTAL RESEARCH PROGRAM. FURTHERMORE THROUGH OUR ADVOCACY EFFORTS, MORE THAN $100 MILLION IN TOTAL FEDERAL FUNDING WAS GENERATED TO ADVANCE LUPUS RESEARCH AND EDUCATION, ENSURING PATIENT ACCESS TO TREATMENTS, AND ENGAGING PEOPLE WITH LUPUS TO SHARE THEIR PERSPECTIVE IN THE DRUG DEVELOPMENT PROCESS. OVER THE YEARS WE HAVE LED INITIATIVES TO OVERCOME BARRIERS TO THE DEVELOPMENT AND APPROVAL OF NEW, EFFECTIVE AND TOLERABLE TREATMENTS FOR PEOPLE WITH LUPUS. THIS PAST YEAR, THE FOUNDATION: - KICKED OFF A GLOBAL EFFORT TO BUILD CONSENSUS AROUND PRIORITIZING THE MOST URGENT NEEDS IN TREATMENT DEVELOPMENT, CLINICAL CARE AND TREATMENT ACCESS. THE FOUNDATION IS LEADING THIS EFFORT WITH THE GOAL OF CREATING A GLOBAL ROADMAP FOR KEY STAKEHOLDERS TO FOLLOW. - CONTINUED OUR IMPORTANT PARTNERSHIP WITH THE FOUNDATION FOR THE NATIONAL INSTITUTES OF HEALTH (FNIH) TO SUPPORT A 5-YEAR INITIATIVE TO DEVELOP NEW MEDICINES FOR LUPUS AND OTHER DISEASES. THE SUCCESS OF THIS PROGRAM AND EFFORTS TO DATE HAVE LED TO AN ADDITIONAL 6TH YEAR OF FUNDING FROM KEY PARTNERS. - CONTINUED EFFORTS TO USE POOLED CLINICAL TRIAL DATA (DE-IDENTIFIED) PROVIDED BY PARTICIPATING BIOPHARMA COMPANIES TO IMPROVE THE DESIGN OF LUPUS CLINICAL TRIALS. NEW FINDINGS WERE PRESENTED AT A MAJOR SCIENTIFIC MEETING AND PUBLISHED IN PEER REVIEWED MEDICAL JOURNALS REACHING PHYSICIANS AND OTHER HEALTH CARE PROFESSIONALS GLOBALLY. - CONTINUED TO PUBLISH PAPERS FROM IMPORTANT AND PIVOTAL BASIC, CLINICAL, TRANSLATIONAL AND EPIDEMIOLOGICAL STUDIES OF ALL ASPECTS OF LUPUS AND RELATED DISEASES IN OUR PEER REVIEWED, OPEN ACCESS JOURNAL, THE FIRST OF ITS KIND IN LUPUS, LUPUS SCIENCE & MEDICINE. THE JOURNAL PROVIDES A BARRIER-FREE FORUM FOR PUBLICATION OF GROUND-BREAKING STUDIES IN LUPUS. - PROVIDED NEW FUNDING TO ADDRESS ISSUES CRITICALLY IMPORTANT TO PEOPLE WITH LUPUS, INCLUDING TREATMENT DEVELOPMENT FOR CHILDREN WITH THE DISEASE. - CONTINUED MULTI-YEAR EFFORTS WHICH EXPLORE MESENCHYMAL STEM CELLS AS A POTENTIAL TREATMENT FOR PEOPLE WITH THE DISEASE. - HELPED TO ADDRESS THE ONGOING DECLINE IN SCIENTIFIC MOMENTUM AND LOSS OF CURRENT AND FUTURE LUPUS INVESTIGATORS CAUSED BY A DECLINE IN FEDERAL SUPPORT FOR RESEARCH THROUGH OUR STUDENT FELLOWSHIP AND CAREER DEVELOPMENT GRANT MECHANISMS. AS WELL, THE FOUNDATION HAS BEEN WORKING TO BUILD AND SOLIDIFY KEY PARTNERSHIPS WITH ORGANIZATIONS THAT PLAY A CENTRAL ROLE TO THE ADVANCEMENT OF THE SCIENCE OF LUPUS. KEY 2018 PARTNERSHIPS INCLUDE:THE CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) TO BEGIN RESEARCH THAT LOOKS AT THE KEY PRIORITIES IN CARE AND TREATMENT OF CHILDREN WITH LUPUS. THE SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC), THE PREMIER BODY OF LUPUS EXPERTS FROM THE US AND AROUND THE GLOBE, TO FUND RESEARCH LOOKING INTO THE DAMAGE CAUSED BY THE USE OF STEROIDS ON INDIVIDUAL WHO MUST TAKE THIS MEDICATION TO MANAGE THEIR DISEASE. THROUGH OUR ADVOCACY EFFORTS IN 2018, WE HAVE:- SECURED AN ADDITIONAL $7.5 MILLION, A $1 MILLION INCREASE, TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE CDC, WHICH WOULD BRING TOTAL FUNDING TO $63.8 MILLION.- SECURED AN ADDITIONAL $5 MILLION IN FUNDING FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE (DOD)BRINGING TOTAL DOD FUNDING FOR LUPUS RESEARCH TO NEARLY $37 MILLION. - ADVOCATED FOR AN ADDITIONAL $2 MILLION FOR THE OFFICE OF MINORITY HEALTH'S LUPUS PROGRAM, WHICH SUPPORTS A GRANT MECHANISM SPECIFICALLY FOCUSED ON ADDRESSING THE BARRIERS TO MINORITY PARTICIPATION IN CLINICAL TRIALS.- SUPPORTED AN INCREASE OF $2 BILLION IN FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH.- CONTINUED TO SUPPORT THE FOOD AND DRUG ADMINISTRATION'S COMMITMENT TO INCORPORATING THE PATIENT VOICE INTO THEIR REGULATORY PROCESS TO ACCELERATE THE DRUG DEVELOPMENT PROCESS AND GET SAFER, MORE EFFECTIVE LUPUS THERAPIES TO MARKET FASTER. 2356224 34000 360320 NETWORK SUPPORT AND SERVICES: THE FOUNDATION'S NATIONAL NETWORK IS COMPOSED OF CHAPTERS, REGIONAL OFFICES, COMMUNITY AMBASSADORS, AND LOCAL SUPPORT GROUPS ACROSS THE UNITED STATES. THE NETWORK SUPPORTS THOSE LIVING WITH LUPUS THROUGH OUR PROGRAMS OF EDUCATION, RESEARCH, SUPPORT AND ADVOCACY ALL DESIGNED TO IMPROVE THE QUALITY OF LIFE FOR THOSE WHO SUFFER FROM THE IMPACT OF LUPUS. THE FOUNDATION PROVIDES CAPACITY-BUILDING SERVICES, STRATEGIC SUPPORT, ON-SITE CONSULTATION, AND ORGANIZATIONAL DEVELOPMENT SUPPORT AND TRAINING TO OUR NETWORK, AS WELL AS OVERSIGHT AND RESOURCES TO THE SUPPORT GROUP FACILITATORS ACROSS THE COUNTRY WHO SERVE CONSTITUENTS. ADDITIONALLY, OUR WALK TO END LUPUS NOW EVENTS RALLIED NEARLY 70,000 INDIVIDUALS IN 74 CITIES TO RAISE AWARENESS OF LUPUS AND FUNDS FOR LOCAL COMMUNITIES TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS. THE FOUNDATION ALSO IS LEADING THE WORLD LUPUS FEDERATION, A COALITION OF GLOBAL LUPUS PATIENT ADVOCACY GROUPS TO ADVANCE LUPUS AWARENESS AND ADVOCACY INITIATIVES AROUND THE WORLD THAT CONTINUES TO BRING GREATER GLOBAL ATTENTION AND RESOURCES TO THE FIGHT TO END LUPUS. THIS YEAR WE RELEASED RESULTS OF A LARGE-SCALE INTERNATIONAL SURVEY THAT REVEALED LOW AWARENESS OF LUPUS RESULTS IN PUBLIC MISCONCEPTIONS ABOUT THE DISEASE. THE LACK OF UNDERSTANDING CONTRIBUTES TO THE STIGMATIZATION OF PEOPLE WITH LUPUS, OFTEN LEAVING THEM FEELING ISOLATED FROM FAMILY AND FRIENDS. 929293 134641 PATIENT EDUCATION AND SUPPORT: WE PROVIDED EDUCATION, SUPPORT AND OTHER ASSISTANCE TO INDIVIDUALS WITH LUPUS, THEIR FAMILIES AND CAREGIVERS. BASED ON THE RESULTS OF THE PATIENT, CAREGIVER AND HEALTH CARE PROFESSIONAL NEEDS ASSESSMENT STUDY CONDUCTED IN 2016, WE CONTINUE TO DEVELOP NEW PROGRAMS AND RESOURCES. MORE THAN 3,000 PEOPLE WITH OR TOUCHED BY LUPUS AND OVER 1,000 PHYSICIANS/HEALTH CARE PROFESSIONALS WERE SURVEYED TO IDENTIFY THE BIGGEST NEEDS IN LIVING WITH THE DISEASE, TO IDENTIFY HOW PEOPLE WANT TO RECEIVE THIS HELP AND SUPPORT AND IN WHAT FORMAT THEY WOULD LIKE DELIVERY. IN ADDITION, WE CONDUCTED THE FIRST EVER WEB-BASED AND INTERVIEW-BASED QUALITATIVE RESEARCH WITH CHILDREN AND TEENS WITH LUPUS (PARENTAL CONSENT RECEIVED) TO BETTER UNDERSTAND HOW TO SUPPORT THEM IN THEIR JOURNEY. IN 2018, WE PUBLISHED ABSTRACTS AT TWO MAJOR RHEUMATOLOGY CONFERENCES ON OUR RESEARCH RESULTS. ADDITIONALLY, OUR NATIONAL HEALTH EDUCATOR NETWORK RESPONDED TO MORE THAN 4,400 TELEPHONE, EMAIL AND HANDWRITTEN INQUIRIES IN BOTH ENGLISH AND SPANISH AND HELD LOCAL, COMMUNITY BASED EDUCATION PROGRAMS REACHING INDIVIDUALS LIVING WITH THE DISEASE. THE HEALTH EDUCATORS DIRECTED CONSTITUENTS TO THE NATIONAL RESOURCE CENTER ON LUPUS FOR FURTHER INFORMATION TO MANAGE LUPUS. THE SITE IS BEING UTILIZED MORE THAN EVER AS THE FIRST STOP FOR PEOPLE WHO ARE SEARCHING FOR BASIC INFORMATION ON LUPUS AND LOCAL RESOURCES. WE CONTINUE TO GENERATE ORIGINAL EDUCATION CONTENT, INCLUDING PODCASTS AND RESEARCH SUMMARIES, IN A VARIETY OF FORMATS AND LANGUAGES INCLUDING SPANISH AND MANDARIN. IN 2018, WE PRODUCED A PLAIN LANGUAGE EDUCATION SERIES FOR OUR CORE MATERIALS, WE PRODUCED MATERIALS SPECIFICALLY ON CHILDHOOD LUPUS AND WE LAUNCHED A MONTHLY VIDEO SERIES ON LIVING WITH LUPUS TOPICS. 139035 63600 PROFESSIONAL RELATIONS AND EDUCATION: OUR PROFESSIONAL EDUCATION PROGRAMS TRANSLATE RESEARCH FINDINGS INTO PUBLIC HEALTH RECOMMENDATIONS FOR PHYSICIANS, OTHER HEALTHCARE PROFESSIONALS AND THEIR RESPECTIVE ORGANIZATIONS. IN 2018, WE CONTINUED TO FOCUS OUR EFFORTS ON EXPANDING PARTNERSHIPS WITH ORGANIZATIONS THAT SERVE MEDICAL AND OTHER HEALTH CARE PROFESSIONALS SUCH AS THE RHEUMATOLOGY NURSES SOCIETY AND THE AMERICAN ACADEMY OF FAMILY PHYSICIANS (AAFP). IN PARTICULAR, WE CONTINUE TO WORK WITH THE AAFP TO CREATE A PHYSICIAN EDUCATION PROGRAM WHICH WILL BE MADE AVAILABLE ONLINE TO THE THOUSANDS OF FAMILY PHYSICIANS AROUND THE COUNTRY WITHIN THE NEXT YEAR. IN ADDITION, WE BEGAN WORK WITH MEDSCAPE EDUCATION TO PROVIDE A SERIES OF FIVE PHYSICIAN EDUCATION PROGRAMS THAT ARE CURRENTLY AVAILABLE ONLINE TO OVER 250,000 PRIMARY CARE AND SPECIALTY PHYSICIANS THROUGH OUR NATIONAL RESOURCE CENTER ON LUPUS AND ON MEDSCAPE. OUR MULTI-DISCIPLINARY MEDICAL-SCIENTIFIC ADVISORY COUNCIL CONTINUES TO PROVIDE INSIGHT INTO NEWLY PUBLISHED SCIENCE THAT COULD HAVE AN IMPACT ON THE FIELD. WE SHARE THIS INFORMATION WITH THE PUBLIC AND PROFESSIONAL COMMUNITY ON AN ONGOING BASIS VIA PRINT RESEARCH SUMMARIES, RESEARCH PODCASTS, THROUGH SOCIAL MEDIA CHANNELS TARGETED TO KEY AUDIENCES, AND VIDEOS. 1068328 198241 11945097 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 63 0 1 58 1 1 1 0 0 0 0 1 1 0 0 0 1 0 X 20 20 0 0 0 0 0 1 1 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AR CA CT FL GA HI IL KS KY MD MA MI MN MS NH NJ NM NY NC OK OR PA RI SC TN UT VA WI WV X X SEUNG-AE CHUNG 2023491155 2121 K STREET NW NO 200 WASHINGTON DC 20037 CONRAD GEHRMANN CHAIR 5.00 1.00 X X 0 0 0 STEPHEN RABINOWITZ VICE CHAIR 5.00 X X 0 0 0 LYNN BLANDFORD TREASURER 5.00 X X 0 0 0 JOSEPH A ARNOLD ESQ SECRETARY 5.00 X X 0 0 0 PETER M SCHWAB IMMEDIATE PAST CHAIR 5.00 X X 0 0 0 JANINE ALLEN DIRECTOR 1.00 X 0 0 0 TAMARA ATKINS DIRECTOR 1.00 X 0 0 0 JUDY BARLIN DIRECTOR 1.00 X 0 0 0 ANDREW BROPHY DIRECTOR 1.00 X 0 0 0 KAREN COSTENBADER MD MPH DIRECTOR 1.00 X 0 0 0 BRIDGET JORDAN LEVY DIRECTOR 1.00 X 0 0 0 PHONG NGUYEN DIRECTOR 1.00 X 0 0 0 CAROL ANN PETREN DIRECTOR 1.00 X 0 0 0 BARBARA POLK DIRECTOR 1.00 X 0 0 0 KATHERINE A RUFFATTO DIRECTOR 1.00 X 0 0 0 KATHLEEN RUIZ DIRECTOR 1.00 X 0 0 0 CHRISTINE SMITH DIRECTOR 1.00 X 0 0 0 MARJORIE S SUSMAN DIRECTOR 1.00 X 0 0 0 FRAN TSIMOYIANIS DIRECTOR 1.00 X 0 0 0 HALLIE VANDERHIDER DIRECTOR 1.00 X 0 0 0 SANDRA C RAYMOND CEO 40.00 1.00 X 295640 0 35370 SEUNG-AE CHUNG CHIEF FINANCIAL OFFICER 40.00 X 198495 0 25895 STEVAN W GIBSON PRESIDENT - AS OF 07/2017 40.00 X 100986 0 2065 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 40.00 X 195966 0 19592 DONNA GROGAN VP, DEVELOPMENT AND FUNDRAISING 40.00 X 187944 0 16594 LESLIE HANRAHAN VP, EDUCATION & RESEARCH 40.00 X 181477 0 24767 JEANINE SMITH VP, NETWORK DEVELOPMENT 40.00 X 173462 0 16541 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT RELATIONS 40.00 X 167147 0 6819 SUSAN J GLOOR REGIONAL DIRECTOR, NE 40.00 X 128685 0 15403 DUANE PETERS SR. DIRECTOR OF COMMUNICATIONS 40.00 X 117638 0 21864 PATRICIA DAVIDSON SR. DIRECTOR OF EDUCATION & RESEARCH 40.00 X 116005 0 9181 WILMA COMENAT - UNTIL 072018 REGIONAL DIRECTOR, PNW 40.00 X 115320 0 8693 MONICA SMITH DIRECTOR OF DEVELOPMENT, NE 40.00 X 109692 0 6797 2088457 0 209581 14 0 1 0 GLS COMPANIES PO BOX 1450 MINNEAPOLIS MN 55486 POSTAGE AND MAILHOUSE SERVICES 1154551 GRAPHIC COMMUNICATIONS PO BOX 933233 ATLANTA GA 31193 POSTAGE AND MAILHOUSE SERVICES 865116 PRODUCTION SOLUTIONS 1953 GALLOWS ROAD VIENNA VA 22182 PRODUCTION/DESIGN OF MAILINGS 433123 OGILVY PUBLIC RELATIONS WORLDWIDE INC PO BOX 781983 PHILADELPHIA PA 19178 AWARENESS CAMPAIGN CONSULTING 301492 BLACKBAUD PO BOX 930256 ATLANTA GA 31193 DATABASE/CRM SUBSCRIP. & MAINT. 265180 12 195958 245935 51772 1173257 11657241 2849671 13324163 PROG. EVENTS/OTHER 900099 2605399 2605399 MEMBERSHIP DUES 900099 360320 360320 PUBLICATIONS 900099 23294 23294 2989013 40931 40931 8856 8856 93750 245935 128741 -34991 -34991 2614995 2614995 0 REIMBURSEMENTS 900099 2850 2850 LIST RENTAL INCOME 900099 695 695 3545 16331517 2989013 0 18341 X 1303346 1303346 10000 10000 1871608 1509389 283316 78903 3074460 2479352 187849 407259 120541 98631 4730 17180 349395 274694 35803 38898 271986 220308 24479 27199 95930 88603 7054 273 110119 8595 101524 96850 96850 2620225 2526577 27630 66018 133857 91994 41863 236559 122335 104235 9989 719901 546652 82262 90987 604181 493117 52022 59042 294923 243451 6125 45347 722135 574892 5642 141601 7536 6054 735 747 13999 10615 3384 242021 206119 17006 18896 60941 41186 13989 5766 POSTAGE & MAILHOUSE 2160776 768510 31638 1360628 PRINTING & PUBLICATIONS 338537 275380 3584 59573 BAD DEBT EXPENSE 102899 102899 MEMBERSHIP DUES 48120 38043 603 9474 14803 7254 6974 575 15625648 11945097 1100099 2580452 X 2350068 863316 27426 1459326 2172561 2390439 2624576 2733453 1211455 2194324 278850 185199 35253 26126 2090464 769662 1396597 1320802 285196 432395 324687 237784 8329175 9520522 1247324 1892217 623334 619214 193994 0 199114 138742 1615830 1625228 3879596 4275401 X 2740916 3303761 1348913 1564233 359750 377127 4449579 5245121 8329175 9520522 X 705869 16276 73397 X 0 1 X 1 1 1 X 11338917 10659137 11096055 12484585 13324163 58902857 11338917 10659137 11096055 12484585 13324163 58902857 2159843 56743014 72345 33403 40257 24753 50482 221240 81813 4589 10799 4000 101201 59225298 8336737 0.95810 0.95990 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - 2013 AMOUNT: $ 81,813. 2014 AMOUNT: $ 4,589. 2015 AMOUNT: $ 10,799. 2016 AMOUNT: $ 4,000. 2017 AMOUNT: $ 0. 0 49884 49884 15478914 15528798 926440 231610 0 0 755905 767036 807522 926440 3256903 4885355 116365 79530 71597 49884 317376 188976 191759 201881 231610 814226 1221339 45252 45252 359750 21234 3857 377127 338723 24657 2253 1377 359750 327808 15228 3344 969 338723 331953 29 -144 2578 1452 327808 107300 220988 4483 481 337 331953 1.00000 1 0 1061513 168932 892581 431081 355179 75902 597870 245551 352319 1320802 CAPITAL LEASE OBLIGATIONS 21509 DEFERRED LEASE INCENTIVE 855100 DEFERRED RENT 748619 1625228 X 16602751 16276 181561 73397 271234 16331517 0 16331517 15807209 181561 181561 15625648 0 15625648 PART V, LINE 4: THE EARNINGS ON THE DONOR-RESTRICTED ENDOWMENT ARE FOR GENERAL OPERATIONS AND RESEARCH. THE FOUNDATION'S BOARD APPROVES THE SPENDING OF THE EARNINGS ON THE ENDOWMENT FUND ON AN ANNUAL BASIS WHEN IT APPROVES THE ANNUAL BUDGET. PART X, LINE 2: THE FOUNDATION PERFORMED AN EVALUATION OF UNCERTAINTY IN TAXES FOR THE YEARS ENDED SEPTEMBER 30, 2018 AND 2017, AND DETERMINED THAT THERE WERE NO MATTERS THAT WOULD REQUIRE RECOGNITION IN THE FINANCIAL STATEMENTS OR THAT MAY HAVE ANY EFFECT ON ITS TAX-EXEMPT STATUS. EUROPE (INCLUDING ICELAND & GREENLAND) 0 9 PROGRAM SERVICES CONSULTING 26998 EAST ASIA AND THE PACIFIC 0 1 PROGRAM SERVICES CONSULTING 1500 0 10 0 0 0 10 28498 0 28498 0 0 0 0 0 0 PART I, LINE 3: THE FOUNDATION REPORTED THE EXPENDITURES BASED ON THE ACCOUNTING METHOD USED IN ITS AUDITED FINANCIAL STATEMENTS WHICH IS ON AN ACCRUAL BASIS. X X X X X X X 1 APOGEE RETAIL NY LLC 7949 EAST ACOMA DRIVE SCOTTSDALE AZ 85260 BUYER OF DONATED GOODS 0 1612707 0 1612707 APOGEE RETAIL LLC 11400 SE 6TH STREET BELLEVUE WA 98004 BUYER OF DONATED GOODS 0 1002285 0 1002285 JOHN MINI CONSULTING INC 707 SAVANNAH ROAD LEWES DE 199581521 DIRECT MAIL 0 796596 64850 731746 THE WEBSTER GROUP 5185 MACARTHUR BOULEVARD NW 250 WASHINGTON DC 20016 GALA PRODUCTION & MGMT 0 0 32000 -32000 3411588 96850 3314738 AL AK AR CA CO CT DC FL GA HI IL KS KY LA ME MD MA MI MN MS NV NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI NYC EVENING OF HOPE GALA 339685 245935 93750 99241 29500 339685 245935 93750 99241 29500 128741 -34991 SCHEDULE G, PART I: THE FOUNDATION ENGAGES A PROFESSIONAL FUNDRAISER, THE WEBSTER GROUP, TO PROVIDE EVENT MANAGEMENT AND PRODUCTION, AND REGISTRATION AND SEATING SERVICES FOR OUR ANNUAL GALA. THEY DO NOT SOLICIT CONTRIBUTIONS ON OUR BEHALF. SCHEDULE G, PART I: THE FOUNDATION SELLS ALL DISCARDED HOUSEHOLD PROPERTY DONATED TO APOGEE RETAIL NY, LLC AND APOGEE RETAIL, LLC. THE FOUNDATION BEARS ALL MANAGEMENT RESPONSIBILITY ASSOCIATED WITH MARKETING EFFORTS TO SOLICIT DONATIONS OF DISCARDED HOUSEHOLD PROPERTY THROUGH DIRECT MAIL, INCLUDING CREATING, PREPARING, AND MAILING ALL PRINTED PRODUCTS OR LANGUAGE UTILIZED IN ANY MARKETING EFFORT. AS BUYERS, BOTH APOGEE RETAIL NY, LLC AND APOGEE RETAIL, LLC PICK UP AT THEIR SOLE EXPENSE, FOR AND IN THE NAME OF THE FOUNDATION, THE DONATED HOUSEHOLD PROPERTY AT LOCATIONS SPECIFIED BY THE FOUNDATION. 1 MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVENUE SUITE 805 CHARLESTON SC 29425 576000722 501(C)(3) 756000 STEM CELL RESEARCH SEATTLE CHILDREN'S HOSPITAL UNIVERSITY OF WASHINGTON PO BOX 50020 SEATTLE WA 98145 910564748 501(C)(3) 200000 PEDIATRIC LUPUS RESEARCH SYSTEMIC LUPUS INTERNATIONAL COLLABORATING CLINICS 222 N LASALLE STREET SUITE 2400 CHICAGO IL 60601 800481892 501(C)(3) 100000 STUDY ON STEROID DOSE AND ORGAN DAMAGE IN PEOPLE WITH LUPUS THE BRIGHAM AND WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 135562308 501(C)(3) 70000 CAREER DEVELOPMENT AWARD CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE 555 EAST WELLS STREET SUITE 1100 MILWAUKEE WI 53202 464152355 501(C)(3) 50000 CLINCAL CARE IN PEDIATRIC LUPUS ALBERT EINSTEIN COLLEGE OF MEDICINE 1300 MORRIS PARK AVENUE BRONX NY 10461 131624225 501(C)(3) 47000 CDAI GRANT AWARD LFA NEW JERSEY CHAPTER 150 MORRIS AVENUE SPRINGFIELD NJ 07081 222107053 501(C)(3) 25000 PROGRAM GRANT THE CHILDREN'S HOSPITAL OF PHILADELPHIA 3401 CIVIC CENTER BOULEVARD PHILADELPHIA PA 19104 231352166 501(C)(3) 22346 CAREER DEVELOPMENT AWARD 8 0 RESEARCH AWARD 2 10000 PART I, LINE 2: ALL GRANT RECIPIENTS ARE REQUIRED TO SIGN THE FOUNDATION'S GRANT AWARD AGREEMENT AND MEET THE FOLLOWING CONDITIONS: - MEET ALL APPLICABLE AND RELEVANT GUIDELINES REGARDING THE USE OF ANIMAL AND HUMAN SUBJECTS. - MEET ALL INSTITUTIONAL POLICIES AND LOCAL, STATE, AND FEDERAL REGULATIONS GOVERNING THE CONDUCT OF RESEARCH. - SUBMIT INTERNAL REVIEW BOARD AND INSTITUTIONAL ANIMAL CARE AND USE COMMITTEE (IF APPLICABLE) APPROVAL FROM THE GRANT RECIPIENT'S INSTITUTION. - COMPLETE AND SUBMIT THE "PROPOSED BUDGET". - ADHERE TO THE FOUNDATION'S POLICY ON INVENTIONS AND DISCOVERIES. - NOTIFY THE FOUNDATION OF ANY PUBLICATION OR PROFESSIONAL PRESENTATION BASED ON FOUNDATION-FUNDED RESEARCH PROJECT AND PROVIDE THE FOUNDATION WITH ELECTRONIC COPIES OF ANY PUBLICATION OR PROFESSIONAL PRESENTATION MADE POSSIBLE, FACILITATED, EXPEDITED, OR SUPPORTED IN ANY WAY BY THE AWARD, EVEN IF DEVELOPED, INITIATED, OR FINALIZED AFTER THE AWARD PERIOD HAS EXPIRED, WITHIN 30 DAYS OF FINAL PRODUCTION. - ACKNOWLEDGE THE FOUNDATION IN ANY AND ALL PUBLICATIONS OR PRESENTATIONS BASED, PARTIALLY OR WHOLLY, ON OR DEVELOPED UNDER THE AWARD MUST, UNLESS OTHERWISE REQUESTED BY THE FOUNDATION, WITH THE FOLLOWING STATEMENT: "THIS RESEARCH WAS SUPPORTED BY THE LUPUS FOUNDATION OF AMERICA, INC." - ALL FUNDS ARE USED EXCLUSIVELY TOWARD EXPENDITURES FOR THE SAID RESEARCH, AND NO AMOUNT OF THE RESEARCH GRANT FUNDS CAN BE USED TO FINANCE INDIRECT COSTS. - KEEP COMPLETE AND ACCURATE RECORDS ON THE RECEIPT AND DISBURSEMENT OF ALL AWARD FUNDS, AND MAY NOT CO-MINGLE ANY FUNDS FROM OTHER SOURCES. MUST RETAIN ALL SUCH RECORDS FOR A PERIOD OF AT LEAST TWO YEARS AFTER THE EXPIRATION DATE OF THE AGREEMENT AND THE FOUNDATION HAS THE RIGHT TO REVIEW SUCH RECORDS UPON REQUEST. IN ADDITION, ALL GRANT RECIPIENTS ARE REQUIRED TO SUBMIT INTERIM AND FINAL REPORTS WITH A GRANT INSTALLMENT PAYMENT TIED TO REPORT SUBMISSION. THE FOUNDATION'S EDUCATION & RESEARCH TEAM REVIEWS THE INTERIM AND FINAL REPORTS TO CONFIRM THAT THE INVESTIGATOR ACHIEVED THE ORIGINAL STUDY OBJECTIVE. - AGREE THAT EITHER PARTY MAY TERMINATE THE AGREEMENT FOR CONVENIENCE UPON THIRTY (30) DAYS PRIOR WRITTEN NOTICE TO THE OTHER PARTY. THE FOUNDATION RESERVES THE RIGHT TO TERMINATE THE AGREEMENT EFFECTIVE IMMEDIATELY, UPON WRITTEN NOTICE, IF THE GRANT RECIPIENT (I) IS UNABLE TO COMPLETE THE STUDY; (II) MATERIALLY ALTER THE STUDY; (III) USES THE AWARD GRANT FOR PROHIBITED EXPENSES OR; (IV) BREACHES OF THE AGREEMENT AND FAILS TO CURE SUCH BREACH WITHIN TEN (10) DAYS FOLLOWING RECIPIENT'S OR INSTITUTION'S RECEIPT OF WRITTEN NOTICE THEREOF. - ACKNOWLEDGE THAT NEITHER THE FOUNDATION, THE INSTITUTION, NOR INVESTIGATOR SHALL BE LIABLE FOR ANY FAILURE TO PERFORM ANY OBLIGATIONS UNDER THE AGREEMENT IF SUCH FAILURE RESULTS FROM CAUSES BEYOND ITS REASONABLE CONTROL. - ACKNOWLEDGE THAT THE AGREEMENT SHALL BE GOVERNED BY THE LAWS OF THE DISTRICT OF COLUMBIA, WITHOUT REGARD TO ITS CONFLICT OF LAW RULES. - ACKNOWLEDGE THAT THE AGREEMENT MAY NOT BE ASSIGNED OR TRANSFERRED WITHOUT THE FOUNDATION'S PRIOR WRITTEN CONSENT. X X X X 0 0 0 0 0 0 0 1 0 SANDRA C RAYMOND CEO 260000 0 35000 0 640 0 24300 0 11070 0 331010 0 0 0 SEUNG-AE CHUNG CHIEF FINANCIAL OFFICER 191847 0 5750 0 898 0 18106 0 7789 0 224390 0 0 0 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 190236 0 5000 0 730 0 17758 0 1834 0 215558 0 0 0 DONNA GROGAN VP, DEVELOPMENT AND FUNDRAISING 182214 0 5000 0 730 0 9536 0 7058 0 204538 0 0 0 LESLIE HANRAHAN VP, EDUCATION & RESEARCH 175747 0 5000 0 730 0 18176 0 6591 0 206244 0 0 0 JEANINE SMITH VP, NETWORK DEVELOPMENT 167564 0 5000 0 898 0 8149 0 8392 0 190003 0 0 0 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT RELATIONS 161470 0 5000 0 677 0 0 0 6819 0 173966 0 0 0 PART I, LINE 7 THE PRESIDENT & CEO'S BONUS IS AWARDED BY THE EXECUTIVE COMMITTEE OF THE BOARD OF DIRECTORS BASED ON A PERFORMANCE EVALUATION. OTHER OFFICERS, KEY EMPLOYEES, AND HIGHEST COMPENSATED EMPLOYEES' BONUSES ARE AWARDED AT THE DISCRETION OF THE PRESIDENT & CEO. X 2614995 FAIR MARKET VALUE X 106 30091 FAIR MARKET VALUE X 4 204585 FAIR MARKET VALUE 0 1 1 PART I, COLUMN (B): THE FOUNDARION REPORTS THE NUMBER OF CONTRIBUTIONS IN PART I, COLUMN (B). PART I, LINE 32B: THE FOUNDATION USES THE SERVICES OF APOGEE RETAIL NY, LLC AND APOGEE RETAIL, LLC TO ASSIST IN THE COLLECTION OF DONATED HOUSEHOLD GOODS. ADDITIONALLY, THE FOUNDATION USES THE SERVICES OF AUTOMATED RECOVERY SERVICES, INC. TO ASSIST IN THE PROCESSING AND MANAGING OF THE VEHICLE DONATION PROGRAM. FORM 990, PART VI, SECTION A, LINE 7A THE CHAPTERS HAVE THE AUTHORITY TO ELECT THE MEMBERS OF THE NATIONAL COUNCIL REPRESENTATIVES OF THE BOARD OF THE DIRECTORS. FORM 990, PART VI, SECTION A, LINE 7B THE CHAPTERS HAVE THE AUTHORITY TO VOTE ON ANY PROPOSED CHANGES BY THE BOARD OF THE DIRECTORS TO THE FOUNDATION'S BYLAWS. FORM 990, PART VI, SECTION B, LINE 11B THE FOUNDATION HIRES AN INDEPENDENT ACCOUNTING FIRM TO PREPARE THE FORM 990. A COPY OF THE FINAL DRAFT OF THE FORM 990 IS REVIEWED AND APPROVED BY THE FINANCE COMMITTEE VIA A TELEPHONE CONFERENCE. ONCE APPROVED BY THE FINANCE COMMITTEE, A COMPLETE COPY OF THE FORM 990 IS DISTRIBUTED TO ALL MEMBERS OF THE BOARD OF DIRECTORS BEFORE FILING THE FORM WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C AT THE FOUNDATION'S BOARD MEETING IN THE FALL, THE CONFLICT OF INTEREST STATEMENT AND QUESTIONNAIRE ARE COMPLETED AND SIGNED BY EACH OFFICER, DIRECTOR, COMMITTEE MEMBER AND KEY EMPLOYEE. ALL CONFLICT OF INTEREST STATEMENTS AND QUESTIONNAIRES ARE REVIEWED BY THE PRESIDENT & CEO AND CHIEF FINANCIAL OFFICER WHO NOTE ANY ACTUAL OR POTENTIAL CONFLICTS. WHEN THERE IS A DOUBT AS TO WHETHER A CONFLICT OF INTEREST EXISTS, THE MATTER SHALL BE RESOLVED BY A VOTE OF THE BOARD OF DIRECTORS (OR ITS COMMITTEE), EXCLUDING THE PERSON CONCERNING WHOSE SITUATION THE DOUBT HAS ARISEN. THERE HAVE BEEN NO CONFLICTS NOTED DURING THE YEAR. FORM 990, PART VI, SECTION B, LINE 15 THE EXECUTIVE COMMITTEE OF THE BOARD (EC) CONDUCTS AN ANNUAL PERFORMANCE EVALUATION OF THE PRESIDENT & CEO AND RECOMMENDS SALARY LEVEL CHANGES TO THE BOARD OF DIRECTORS FOR APPROVAL. THE RECOMMENDED CHANGES ARE BASED ON THE MOST CURRENTLY AVAILABLE COMPARABILITY DATA FROM THE MANAGEMENT COMPENSATION SURVEY STUDY PUBLISHED JOINTLY BY THE NATIONAL HEALTH COUNCIL AND THE NATIONAL HUMAN SERVICES ASSEMBLY. ONCE APPROVED, ONE OF THE MEMBERS OF THE EC, GENERALLY THE CHAIRMAN OR THE TREASURER, NOTIFIES THE CHIEF FINANCIAL OFFICER OF THE NEW APPROVED COMPENSATION ARRANGEMENT FOR THE PRESIDENT & CEO. ALL OTHER KEY EMPLOYEES' ANNUAL PERFORMANCE EVALUATIONS ARE CONDUCTED BY THE PRESIDENT & CEO AND THEIR APPROVED ANNUAL SALARY INCREASES ARE DOCUMENTED ON THEIR ANNUAL PERFORMANCE EVALUATION FORM. FORM 990, PART VI, SECTION C, LINE 19 THE FOUNDATION MAKES ITS FINANCIAL STATEMENTS, FEDERAL FORM 990, AND ANNUAL REPORT AVAILABLE TO THE PUBLIC UPON REQUEST AND BY POSTING THEM ON ITS WEBSITE. ALL OTHER GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G FULFILLMENT SERVICES: PROGRAM SERVICE EXPENSES 13,202. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 39,064. TOTAL EXPENSES 52,266. PAYROLL SERVICES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 9,955. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 9,955. OTHER CONTRACTUAL SERVICES: PROGRAM SERVICE EXPENSES 36,353. MANAGEMENT AND GENERAL EXPENSES 12,615. FUNDRAISING EXPENSES 21,332. TOTAL EXPENSES 70,300. CONSULTING: PROGRAM SERVICE EXPENSES 1,268,329. MANAGEMENT AND GENERAL EXPENSES 5,060. FUNDRAISING EXPENSES 5,622. TOTAL EXPENSES 1,279,011. MEDICAL WRITING SERVICES: PROGRAM SERVICE EXPENSES 8,558. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,558. PROGRAM EVENT PLANNING AND MANAGEMENT: PROGRAM SERVICE EXPENSES 1,150,748. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,150,748. PUBLIC AND MEDIA RELATIONS: PROGRAM SERVICE EXPENSES 49,387. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 49,387. FORM 990, PART XI, LINE 9: WRITE-OFFS OF GRANTS PAYABLE 73,397. LUPUS AMERICA COMMUNITIES 2121 K STREET NW SUITE 200 WASHINGTON DC 20037 900870868 SUPPORTING ORGANIZATION DC 501(C)(3) LINE 12C, III-FI N/A 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0