2018-02-14T14:21:50-06:00 2017-09-30 521511275 RAFFA PC 1899 L STREET NW SUITE 850 WASHINGTON DC 20036 990 2016-10-01 431131436 THE LUPUS FOUNDATION OF AMERICA INC LUPU 2023491155 2121 K STREET NW NO 200 WASHINGTON DC 20037 SANDRA C RAYMOND PRESIDENT & CEO 2023491155 2018-02-14 1 FRANK H SMITH P00639053 2028225000 2018-02-07 207.238.152.241 2018-02-14 15:21:38 ES P 248DEB9EEDB6BAD9CF18FF838D0EF823C1BE4C2C 8C0378E079F30AD21A74C2FEB47D6553B85C0545 2016 2021-01-29 14:40:06Z SANDRA C RAYMOND 2121 K STREET NW NO 200 WASHINGTON DC 20037 16761840 0 X WWW.LUPUS.ORG X 1977 DC IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS THROUGH RESEARCH, EDUCATION, SUPPORT AND ADVOCACY. 18 18 54 2839 0 0 11096055 12484585 1151507 1137886 32129 18188 248488 -5227 12528179 13635432 499540 573295 0 0 4571725 4900430 106826 105703 2975668 7281308 7676712 12459399 13256140 68780 379292 8069534 8329175 4025410 3879596 4044124 4449579 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 4188557 51298 27273 PUBLIC INFORMATION AND EDUCATION: 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. THIS PROGRAM INCLUDES PUBLIC AWARENESS CAMPAIGNS, MEDIA RELATIONS, ONLINE AND SOCIAL MARKETING, AND AGGRESSIVE OUTREACH EFFORTS TO CORPORATE AND COMMUNITY PARTNERS. THROUGHOUT THIS PAST YEAR, THE FOUNDATION CONTINUED TO EXPAND ITS REACH THROUGH IN-PERSON PROGRAMS, SOCIAL MEDIA PLATFORMS AND THE FOUNDATION'S WEBSITES, AND BY ENGAGING CELEBRITIES AND PROMOTING ITS NEW NATIONAL AWARENESS CAMPAIGN, BE FIERCE.TAKE CONTROL. THE CAMPAIGN, PRODUCED IN PARTNERSHIP WITH THE AMERICAN COLLEGE OF RHEUMATOLOGY, 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. THE FOUNDATION'S GOAL ULTIMATELY IS TO GET YOUNG WOMEN TREATED EARLIER AND REDUCE THE LONG-TERM HEALTH CONSEQUENCES ASSOCIATED WITH LUPUS.THE FOUNDATION REMAINS THE NUMBER ONE ONLINE SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN AUDIENCE OF 7.5 MILLION ANNUAL VISITS TO ITS WEBSITE PROPERTIES, AND NEARLY 300,000 FOLLOWERS THROUGH ITS SOCIAL MEDIA PROPERTIES. IN 2015, THE FOUNDATION ENTERED INTO A FIVE-YEAR COOPERATIVE AGREEMENT WITH THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) TO RAISE AWARENESS OF THE SIGNS AND SYMPTOMS OF LUPUS AND PROVIDE GUIDANCE ON THE NEXT STEPS TO TAKE IF LUPUS IS SUSPECTED. THE FOUNDATION DEVOTED MUCH OF ITS EFFORTS DURING 2017 TO LAUNCH SEVERAL INITIATIVES UNDER THE PROGRAM INCLUDING THE NATIONAL RESOURCE CENTER ON LUPUS (RESOURCE CENTER). THE RESOURCE CENTER IS A LIVING COLLECTION OF UP-TO-DATE RESOURCES AND INFORMATION ON LUPUS. IT PROVIDES ACCURATE, VALID AND UP-TO-DATE INFORMATION ON THE MOST RELEVANT TOPICS RELATED TO LUPUS TAILORED FOR PEOPLE LIVING WITH THE DISEASE, AND THEIR FAMILIES AND CAREGIVERS, AS WELL AS OFFERS RESOURCES FOR HEALTH PROFESSIONALS WHO PROVIDE CARE AND SUPPORT FOR PATIENTS WITH LUPUS. THE FOUNDATION ALSO LAUNCHED LUPUSCONNECT, AN ONLINE COMMUNITY FOCUSED ON CONNECTING INDIVIDUALS AND THEIR LOVED ONES WITH OTHER WHO ARE ALSO LIVING WITH THIS DISEASE. TO DATE, LUPUSCONNECT HAS OVER 5,000 ACTIVE MEMBERS FROM AROUND THE GLOBE. 2089902 475536 332600 RESEARCH: OUR NATIONAL RESEARCH PROGRAM ENTITLED SMARTER 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.SINCE 2009, WE HAVE IMPLEMENTED INITIATIVES TO OVERCOME BARRIERS TO THE DEVELOPMENT AND APPROVAL OF NEW, EFFECTIVE AND TOLERABLE TREATMENTS FOR LUPUS. THESE INITIATIVES INCLUDE BUILDING PRIVATE/PUBLIC COLLABORATIONS AND CREATING CONSENSUS, CREATING TOOLS, RESOURCES AND AN ONLINE PORTAL TO TRAIN HEALTH PROFESSIONALS ON DISEASE ACTIVITY INSTRUMENTS USED IN CLINICAL STUDIES AND OUR EFFORT TO CONDUCT FEASIBILITY RESEARCH TO BETTER UNDERSTAND IF IT IS POSSIBLE TO CREATE A NEW, SIMPLIFIED INSTRUMENT DESIGNED TO ASSESS DISEASE ACTIVITY IN THE CLINIC AND IN CLINICAL TRIALS. WE CONTINUED OUR 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. ADDITIONALLY, WE 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 PUBLISHED IN A MAJOR RHEUMATOLOGY JOURNAL AND PRESENTED AT MAJOR SCIENTIFIC MEETINGS OF MEDICAL ORGANIZATIONS IN THE US AND ABROAD. OUR PEER REVIEWED, OPEN ACCESS JOURNAL, THE FIRST OF ITS KIND IN LUPUS, LUPUS SCIENCE & MEDICINE, CONTINUED TO PUBLISH PAPERS FROM IMPORTANT AND PIVOTAL BASIC, CLINICAL, TRANSLATIONAL AND EPIDEMIOLOGICAL STUDIES OF ALL ASPECTS OF LUPUS AND RELATED DISEASES. THE JOURNAL PROVIDES A BARRIER-FREE FORUM FOR PUBLICATION OF GROUND-BREAKING STUDIES IN LUPUS. WE PROVIDED NEW FUNDING TO ADDRESS ISSUES CRITICALLY IMPORTANT TO PEOPLE WITH LUPUS, INCLUDING EXPANDED PEDIATRIC LUPUS NEPHRITIS BIOMARKER RESEARCH, GROUNDBREAKING MESENCHYMAL STEM CELL RESEARCH. ADDITIONALLY, WE ARE HELPING 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. THROUGH OUR ADVOCACY EFFORTS, WE ARE SECURING FEDERAL FUNDING TO ADVANCE LUPUS RESEARCH, ENSURING PATIENT ACCESS TO TREATMENTS, AND ENGAGING PEOPLE WITH LUPUS TO SHARE THEIR PERSPECTIVE IN THE DRUG DEVELOPMENT PROCESS. IN 2017, WE HAVE:- ADVOCATED TO SECURE AN ADDITIONAL $6.5 MILLION TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE CDC, WHICH WOULD BRING TOTAL FUNDING TO $56.3 MILLION. - LED EFFORTS TO CREATE A DEDICATED LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE. IN 2017, WE SECURED AN ADDITIONAL $5 MILLION IN FUNDING FOR THE PROGRAM, WHICH IF ENACTED, WOULD BRING TOTAL DOD FUNDING FOR LUPUS RESEARCH TO MORE THAN $31 MILLION. - ADVOCATED FOR AN ADDITIONAL $2 MILLION FOR THE LUPUS INITIATIVE AT THE OFFICE OF MINORITY HEALTH 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.- PARTNERED WITH THE LUPUS AND ALLIED DISEASES ASSOCIATION AND THE LUPUS RESEARCH ALLIANCE TO ORGANIZE THE LUPUS PATIENT-FOCUSED DRUG DEVELOPMENT MEETING AS PART OF THE FOOD AND DRUG ADMINISTRATION'S COMMITMENT TO INCORPORATING THE PATIENT VOICE INTO THEIR REGULATORY PROCESS.- SUCCESSFULLY ADVOCATED FOR THE REAUTHORIZATION OF THE PRESCRIPTION DRUG USER FEE ACT WHICH FUNDS THE FOOD AND DRUG ADMINISTRATION'S DRUG REVIEW PROCESS. 1972100 46461 487054 NETWORK SUPPORT AND SERVICES: THE FOUNDATION'S NATIONAL NETWORK IS COMPOSED OF CHAPTERS, REGIONAL OFFICES, COMMUNITY AMBASSADORS AND LOCAL SUPPORT GROUPS LOCATED THROUGHOUT THE UNITED STATES. THE NETWORK SUPPORTS PROGRAMS DESIGNED TO IMPROVE THE QUALITY OF LIFE FOR ALL PEOPLE 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 SUPPORT TO THE SUPPORT GROUP FACILITATORS ACROSS THE COUNTRY WHO SERVE CONSTITUENTS THROUGH APPROXIMATELY 200 SUPPORT GROUPS. 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 AN E- REPORT - LUPUS KNOWS NO BOUNDARIES - TO EDUCATE PEOPLE AROUND THE GLOBE ABOUT THE DISEASE AND ITS IMPACT. 795712 79616 PATIENT EDUCATION AND SUPPORT: WE PROVIDED EDUCATION, SUPPORT AND OTHER ASSISTANCE TO INDIVIDUALS WITH LUPUS, THEIR FAMILIES AND CAREGIVERS. IN 2016 WE INITIATED AND COMPLETED A NATIONAL PATIENT, CAREGIVER AND HEALTH CARE PROFESSIONAL NEEDS ASSESSMENT. 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. THE LEARNINGS WERE UTILIZED IN 2017 TO BUILD OUR ORGANIZATIONAL HEALTH CONTENT STRATEGY AND SUPPORT PROGRAM DEVELOPMENT AND CONTENT GENERATION ON OUR NATIONAL RESOURCE CENTER ON LUPUS. AS WELL, THE INFORMATION ON CHILDREN SUPPORTED THE DEVELOPMENT OF SPECIFIC PRINT CONTENT AND LED US TO CREATE AN AREA ON LUPUSCONNECT FOR TEENS LIVING WITH LUPUS. WE CONTINUE TO DEVELOP NEW PROGRAMS AND RESOURCES FROM THE RESULTS OF THE RESEARCH. 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 DECREASE IN HEALTH EDUCATOR INQUIRIES COMPARED TO 2016 CAN BE ATTRIBUTED TO THE LAUNCH OF THE NATIONAL RESOURCE CENTER ON LUPUS. THE SITE IS BEING UTILIZED MORE THAN EVER AS THE FIRST STOP FOR PEOPLE WHO ARE SEARCHING FOR BASIC INFORMATION FROM PEOPLE SEEKING LUPUS INFORMATION 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. 166197 211343 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 2017, 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 ARE WORKING WITH THE AAFP TO CREATE A PHYSICIAN EDUCATION PROGRAM WHICH WILL BE MADE AVAILABLE ONLINE TO THE THOUSANDS OF FAMILY PHYSICIANS AROUND THE COUNTRY. THIS WILL BE A THREE YEAR EFFORT WITH PLANNING BEGINNING IN 2017. OUR MULTI-DISCIPLINARY MEDICAL-SCIENTIFIC ADVISORY COUNCIL CONTINUES TO PROVIDE INSIGHT INTO NEWLY PUBLISHED SCIENCE THAT COULD HAVE AN IMPACT ON THE FIELD. WE SHARED THIS INFORMATION WITH THE PUBLIC AND PROFESSIONAL COMMUNITY VIA PRINT RESEARCH SUMMARIES, PODCASTS AND VIDEOS. 961909 290959 9212468 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 71 0 1 54 1 0 0 0 0 0 1 1 0 0 0 1 0 X 18 18 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 ME 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 GARY GILKESON MD DIRECTOR 1.00 X 0 0 0 BRIDGET JORDAN LEVY DIRECTOR 1.00 X 0 0 0 MARGUERETE A LUTER DIRECTOR - UNTIL 06/2017 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 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 PRESIDENT & CEO 40.00 1.00 X 260640 0 11789 SEUNG-AE CHUNG CHIEF FINANCIAL OFFICER 40.00 X 176611 0 7038 DONNA GROGAN VP, DEVELOPMENT AND FUNDRAISING 40.00 X 186557 0 7225 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 40.00 X 184086 0 707 LESLIE HANRAHAN VP, EDUCATION & RESEARCH 40.00 X 172480 0 6744 JEANINE SMITH VP, NETWORK DEVELOPMENT 40.00 X 160798 0 6028 TRACY EVANS DIR., FUND. & DEV. - UNTIL 01/2017 40.00 X 141195 0 8604 DUANE PETERS SR. DIRECTOR OF COMMUNICATIONS 40.00 X 138349 0 11788 TRACY COOLEY COMMUNICATIONS DIR. - UNTIL 02/2017 40.00 X 133552 0 5400 SUSAN J GLOOR REGIONAL DIRECTOR, NE 40.00 X 124764 0 8604 PATRICIA DAVIDSON SR. 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RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 45252 26345 71597 13078840 13150437 807522 201881 0 0 775701 755905 767036 807522 3106164 4659246 104168 116365 79530 71597 371660 193925 188976 191759 201881 776541 1164812 45252 45252 338723 24657 2253 1377 359750 327808 15228 3344 969 338723 331953 29 -144 2578 1452 327808 107300 220988 4483 481 337 331953 107300 481 481 107300 0.00000 1.00000 0.00000 1 0 1061513 87340 974173 697271 460563 236708 450933 265217 185716 1396597 CAPITAL LEASE OBLIGATIONS 13382 DEFERRED LEASE INCENTIVE 932254 DEFERRED RENT 670194 1615830 X 13792395 21163 130800 5000 156963 13635432 0 13635432 13386940 130800 130800 13256140 0 13256140 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, 2017 AND 2016, 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 4 PROGRAM SERVICES CONSULTING 39000 0 4 0 0 0 4 39000 0 39000 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 1784920 0 1784920 APOGEE RETAIL LLC 11400 SE 6TH STREET BELLEVUE WA 98004 BUYER OF DONATED GOODS 0 1238196 0 1238196 JOHN MINI CONSULTING INC 707 SAVANNAH ROAD LEWES DE 199581521 DIRECT MAIL 0 832516 64100 768416 THE WEBSTER GROUP 5185 MACARTHUR BOULEVARD NW 250 WASHINGTON DC 20016 GALA PRODUCTION & MGMT 0 0 41603 0 3855632 105703 3791532 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 BUTTERFLY GALA 447720 360220 87500 7500 85792 10000 447720 360220 87500 7500 85792 10000 103292 -15792 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 ALBERT EINSTEIN COLLEGE OF MEDICINE 1300 MORRIS PARK AVENUE BRONX NY 10461 131624225 501(C)(3) 75000 CDAI RESEARCH GRANT AWARD MEDICAL UNIVERSITY OF SOUTH CAROLINA 179 ASHLEY AVENUE CHARLESTON SC 29425 576000722 501(C)(3) 106536 STEM CELL RESEARCH GRANT CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) 555 EAST WELLS STREET SUITE 1100 MILWAUKEE WI 53202 464152355 501(C)(3) 50000 CLINICAL CARE IN PEDIATRIC LUPUS GRANT THE BRIGHAM AND WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 135562308 501(C)(3) 140000 CAREER DEVELOPMENT AWARD CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 70000 CAREER DEVELOPMENT AWARD LFA NEW JERSEY CHAPTER 150 MORRIS AVENUE SPRINGFIELD NJ 07081 222107053 501(C)(3) 25000 PROGRAM GRANT LFA DCMDVA CHAPTER 1319 F STREET NW SUITE 305 WASHINGTON DC 20004 237448063 501(C)(3) 18750 PROGRAM GRANT LFA HEARTLAND CHAPTER 4640 SHENANDOAH AVENUE ST LOUIS MO 63110 510192362 501(C)(3) 20026 FEDERAL SUBAWARD LFA TEXAS GULF COAST CHAPTER 3730 KIRBY DRIVE SUITE 700 HOUSTON TX 77098 760112724 501(C)(3) 15810 FEDERAL SUBAWARD LFA GEORGIA CHAPTER 1850 LAKE PARK DRIVE SUITE 101 SMYRNA GA 30080 581231804 501(C)(3) 15462 FEDERAL SUBAWARD 10 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 0 0 0 0 0 0 0 1 0 SANDRA C RAYMOND PRESIDENT & CEO 260000 0 0 0 640 0 0 0 11789 0 272429 0 0 0 SEUNG-AE CHUNG CHIEF FINANCIAL OFFICER 173296 0 2537 0 778 0 0 0 7038 0 183649 0 0 0 DONNA GROGAN VP, DEVELOPMENT AND FUNDRAISING 183290 0 2537 0 730 0 0 0 7225 0 193782 0 0 0 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 180819 0 2537 0 730 0 0 0 707 0 184793 0 0 0 LESLIE HANRAHAN VP, EDUCATION & RESEARCH 169213 0 2537 0 730 0 0 0 6744 0 179224 0 0 0 JEANINE SMITH VP, NETWORK DEVELOPMENT 157544 0 2537 0 717 0 0 0 6028 0 166826 0 0 0 DUANE PETERS SR. DIRECTOR OF COMMUNICATIONS 136533 0 837 0 979 0 0 0 11788 0 150137 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. HOWEVER, THERE WAS NO BONUS AWARDED TO THE PRESIDENT & CEO FOR THE YEAR ENDED DECEMBER 31, 2016. OTHER OFFICERS, KEY EMPLOYEES, AND HIGHEST COMPENSATED EMPLOYEES' BONUSES WERE AWARDED AT THE DISCRETION OF THE PRESIDENT & CEO. X 3023116 FAIR MARKET VALUE X 110 21603 FAIR MARKET VALUE X 5 4852 FAIR MARKET VALUE 0 1 1 PART I, COLUMN (B): THE FOUNDATION 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. 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 DRAFT OF THE FORM 990 IS FIRST REVIEWED BY THE CHIEF FINANCIAL OFFICER AND THE FINAL DRAFT OF THE FORM 990 IS REVIEWED BY BOTH THE CHIEF FINANCIAL OFFICER AND THE PRESIDENT & CEO. BEFORE FILING THE FORM WITH THE INTERNAL REVENUE SERVICE (IRS), A COPY OF THE FINAL DRAFT IS DISTRIBUTED TO THE FINANCE COMMITTEE AND THE FORM IS REVIEWED AND APPROVED VIA A TELEPHONE CONFERENCE. ONCE APPROVED BY THE FINANCE COMMITTEE, A COMPLETE COPY OF THE FORM 990 IS UPLOADED TO ONEHUB FOR ALL MEMBERS OF THE BOARD OF DIRECTORS TO REVIEW BEFORE FILING THE FORM WITH THE IRS. 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 RECEIVE AN ANNUAL PERFORMANCE REVIEW BY THE PRESIDENT & CEO AND APPROVED SALARY INCREASES ARE DOCUMENTED ON EACH INDIVIDUAL'S ANNUAL PERFORMANACE 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 15,998. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 33,759. TOTAL EXPENSES 49,757. PAYROLL SERVICES: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 9,823. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 9,823. OTHER CONTRACTUAL SERVICES: PROGRAM SERVICE EXPENSES 26,965. MANAGEMENT AND GENERAL EXPENSES 13,006. FUNDRAISING EXPENSES 5,626. TOTAL EXPENSES 45,597. CONSULTING: PROGRAM SERVICE EXPENSES 1,361,653. MANAGEMENT AND GENERAL EXPENSES 4,350. FUNDRAISING EXPENSES 14,851. TOTAL EXPENSES 1,380,854. MEDICAL WRITING SERVICES: PROGRAM SERVICE EXPENSES 75,575. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 75,575. FORM 990, PART XI, LINE 9: RECOVERIES OF PRIOR YEAR GRANTS 5,000. 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