2021-04-16T05:34:22-05:00 2020-09-30 111986323 MARCUM LLP 1899 L STREET NW SUITE 850 WASHINGTON DC 20036 990 2019-10-01 431131436 LUPUS FOUNDATION OF AMERICA INC LUPU 2023491155 2121 K STREET NW NO 200 WASHINGTON DC 20037 STEVAN W GIBSON PRESIDENT & CEO 2023491155 2021-04-15 1 AARON M FOX P01365820 2022274000 2019 2022-09-23 18:48:47Z STEVAN W GIBSON 2121 K STREET NW NO 200 WASHINGTON DC 20037 12154369 0 X WWW.LUPUS.ORG X 1977 DC IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS THROUGH RESEARCH, EDUCATION, SUPPORT AND ADVOCACY. 19 19 64 2850 0 0 14173781 10961768 2703797 1050075 67504 35110 -67443 -62446 16877639 11984507 1609710 1307607 0 0 6369077 6544233 111639 107400 1116899 8800462 5818172 16890888 13777412 -13249 -1792905 9027246 8259627 3633327 4633955 5393919 3625672 X 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 5100940 8247 545601 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. ONGOING EFFORTS INCLUDES PUBLIC AWARENESS CAMPAIGNS, MEDIA RELATIONS, ONLINE AND SOCIAL MARKETING, AND OUTREACH EFFORTS TO BUILD AND ENHANCE SUSTAINABLE CORPORATE AND COMMUNITY PARTNERSHIPS. LIFE AS WE KNOW IT CHANGED DRAMATICALLY THIS YEAR DUE TO THE ONSET OF THE CORONAVIRUS (COVID-19) PANDEMIC. IT CAUSED QUESTIONS, CONCERNS AND ANXIETY FOR EVERYONE WHICH WERE AMPLIFIED FOR ALL THOSE LIVING WITH LUPUS WHO ARE OFTEN MORE SUSCEPTIBLE TO INFECTIONS LIKE COVID-19. THE LUPUS FOUNDATION OF AMERICA IMMEDIATELY SET UP A CENTRAL HUB FOR COVID-19 RESOURCES IN ENGLISH AND SPANISH ON OUR NATIONAL RESOURCE CENTER ON LUPUS, WHICH HAS BEEN VIEWED MORE THAN 380K TIMES. IN TOTAL, WE NOW HAVE MORE THAN 300 PAGES OF CONTENT RELATED TO CORONAVIRUS AND THE HYDROXYCHLOROQUINE (HCQ) SHORTAGE.WE ALSO LEVERAGED SOCIAL MEDIA TO SHARE THE LATEST UPDATES ON COVID-19 BY CREATING A SERIES OF VIDEO INTERVIEWS WITH MEDICAL EXPERTS AND MEMBERS OF THE LUPUS FOUNDATION OF AMERICA TEAM. MORE THAN 160K FOLLOWERS SHARED OUR EXPERT INTERVIEWS FURTHER EXPANDING OUR REACH OF CRITICAL INFORMATION. OUR COVERAGE OF THE LATEST COVID-19 DEVELOPMENTS CONTINUE, INCLUDING THE IMPORTANCE OF THE FLU SHOT DURING THIS TIME, GOING BACK TO WORK OR SCHOOL, AND INSIGHTS ON A POTENTIAL COVID-19 VACCINE.THROUGHOUT THIS PAST YEAR, THE LUPUS FOUNDATION OF AMERICA (FOUNDATION) CONTINUED TO EXPAND ITS REACH THROUGH EDUCATION PROGRAMS (TURNED VIRTUAL DUE TO COVID-19), SOCIAL MEDIA PLATFORMS AND THE FOUNDATION'S WEBSITES, ENGAGING CELEBRITIES, AND PROMOTING NATIONAL AWARENESS CAMPAIGNS. KEY CORPORATE PARTNERSHIPS HELPED DISTRIBUTE BROCHURES ABOUT LUPUS TO PHYSICIAN OFFICES AND GARNER 12.5 MILLION EXPOSURES OF KEY TIME TO DIAGNOSIS MESSAGES. TRAINED AMBASSADORS HELPED EXPAND OUR REACH AND OUR IMPACT BY RAISING AWARENESS AND EDUCATING THEIR COMMUNITIES ABOUT LUPUS AND THE WORK OF THE LUPUS FOUNDATION OF AMERICA. 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 MORE THAN 350,000 FOLLOWERS THROUGH ITS SOCIAL MEDIA PROPERTIES. WE CREATED A SERIES OF SOCIAL MEDIA CAMPAIGNS TO BRING ATTENTION TO HEALTH DISPARITIES AND HIGHLIGHT RESOURCES AVAILABLE TO ADDRESS THE UNIQUE NEEDS OF DIFFERENT AUDIENCES IMPACTED BY LUPUS. THESE CAMPAIGNS INCORPORATED VIDEOS TO SHARE LUPUS WARRIOR VOICES AND THOSE OF OUR EXPERTS. IN TOTAL ALL OF THESE CAMPAIGNS GENERATED MORE THAN ONE MILLION IMPRESSIONS ACROSS ALL CHANNELS.DURING LUPUS AWARENESS MONTH IN MAY, WE MADE LUPUS VISIBLE WITH 4.5 MILLION IMPRESSIONS, MORE THAN 182K VIEWS OF OUR VIDEOS AND A 9% INCREASE IN TRAFFIC TO OUR LUPUS AWARENESS MONTH HOMEPAGE.THIS YEAR WE CONCLUDED A FIVE-YEAR COOPERATIVE AGREEMENT WITH THE US CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) WHICH SUPPORTED AMONG OTHER THINGS, WORKING WITH FAMILY PHYSICIANS TO IMPROVE THE TIME TO AN ACCURATE LUPUS DIAGNOSIS (SEE PROGRAM 5), RAISING AWARENESS OF LUPUS AMONG YOUNG BLACK AND LATINA WOMEN, AND THE DEVELOPMENT OF THE NATIONAL RESOURCE CENTER ON LUPUS, WHICH HAS BEEN VISITED MORE THAN 18 MILLION TIMES SINCE ITS LAUNCH IN 2017, REACHING PEOPLE IN EVERY STATE. SOME KEY ACCOMPLISHMENTS THIS YEAR INCLUDE:- 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 MORE THAN 129 MILLION IMPRESSIONS AND 94,000, VISITS TO OUR CAMPAIGN WEBSITE TO LEARN MORE.- WE LAUNCHED THE NEW EDUCATIONAL, WHAT IS LUPUS VIDEO, THAT PROVIDES AN ENGAGING EXPLANATION OF WHAT LUPUS IS, ITS IMPACT AND THE DIFFICULTY IN DIAGNOSING, TREATING AND LIVING WITH THIS COMPLEX AND UNPREDICTABLE DISEASE.- SECURED MORE THAN MORE THAN 90 NATIONAL AND LOCAL MEDIA STORIES HIGHLIGHTING THE HYDROXYCHLOROQUINE SHORTAGE AND ITS IMPACT ON PEOPLE WITH LUPUS. - LAUNCHED TAKE CHARGE 2.0, A 12-WEEK EMAIL SERIES GEARED TOWARDS GUIDING NEWLY-DIAGNOSED PEOPLE WITH LUPUS WITH KNOWLEDGE AND SKILLS TO HELP MANAGE THEIR LUPUS SYMPTOMS, WHICH HAS A TOTAL OF NEARLY 7,000 SUBSCRIBERS.- LAUNCHED THE PILOT OF AN ONLINE SELF-CARE PROGRAM. USER EXPERIENCE IS BEING GATHERED SO FURTHER ENHANCEMENTS CAN BE MADE PRIOR TO A BROAD LAUNCH IN 2021. 2876830 13375 103168 NETWORK SUPPORT AND SERVICES:THE FOUNDATION'S NATIONAL NETWORK IS COMPOSED OF CHAPTERS, REGIONAL OFFICES, 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, CONSULTATION AND ORGANIZATIONAL DEVELOPMENT SUPPORT AND TRAINING TO OUR NETWORK, AS WELL AS PROVIDING OVERSIGHT AND RESOURCES TO THE SUPPORT GROUP FACILITATORS ACROSS THE COUNTRY WHO SERVE CONSTITUENTS. THE COVID-19 PANDEMIC MEANT MOVING TO VIRTUAL SUPPORT GROUPS, WHICH ALLOWED GREATER ACCESS TO THIS IMPORTANT RESOURCE, AT A TIME THAT WAS NEEDED MORE THAN EVER.IN 2020, DUE TO THE IMPACT OF COVID-19, OUR MORE THAN 74 IN-PERSON WALK TO END LUPUS NOW EVENTS WERE MOVED TO A NATIONAL VIRTUAL EVENT, WHICH ALLOWED FOR PARTICIPATION FROM PARTICIPANTS FROM ALL 50 STATES TO RAISE AWARENESS 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 IN WHICH NEARLY 7 IN 10 PARTICIPANTS RESPONDED THAT LUPUS HAMPERS THEIR MOBILITY. THE SURVEY INCLUDED RESPONDENTS FROM MORE THAN 70 COUNTRIES, AND REINFORCES THE DEVASTATING AND LIFE-ALTERING EFFECTS LUPUS CAN CAUSE TO PHYSICAL FUNCTION FOR THE ESTIMATED FIVE MILLION PEOPLE WHO LIVE WITH THE DISEASE ACROSS THE GLOBE. 2777767 1284021 263450 RESEARCH: OUR NATIONAL RESEARCH PROGRAM SEEKS TO FIND SOLUTIONS TO PROBLEMS THAT FOR DECADES HAVE STALLED PROGRESS IN LUPUS RESEARCH, LUPUS TREATMENT DEVELOPMENT, PATIENT CARE AND TREATMENT ACCESS. WE AGGRESSIVELY PURSUED STRATEGIES TO INCREASE FEDERAL, STATE AND INDUSTRY SUPPORT FOR RESEARCH ON LUPUS, FACILITATED STRATEGIC COLLABORATIONS, LED GLOBAL COLLABORATIONS TO DRIVE CONSENSUS, 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 MORE THAN $1.5 MILLION INTO RESEARCH THROUGH PEER-REVIEWED RESEARCH PROGRAMS, DIRECT AWARDS, AND LFA RESEARCH PARTNERSHIPS. FURTHERMORE THROUGH OUR ADVOCACY EFFORTS, THE FOUNDATION WORKED WITH CONGRESS TO SECURE MORE THAN $20 MILLION IN FUNDING SPECIFICALLY TO ADVANCE LUPUS RESEARCH AND EDUCATION PROGRAMS, IN ADDITION TO SECURING A $1.25 BILLION INCREASE IN FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH, THE LARGEST PUBLIC FUNDER OF LUPUS RESEARCH IN THE WORLD. 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:- LAUNCHED, RAY: RESEARCH ACCELERATED BY YOU, A LUPUS DATA PLATFORM WHERE PEOPLE WITH LUPUS AND CAREGIVERS SHARE ANONYMOUS INFORMATION ABOUT THEIR LUPUS EXPERIENCE TO HELP RESEARCHERS ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND IMPROVE DISEASE OUTCOMES.- REACHED THE FIRST-EVER GLOBAL CONSENSUS ON THE BARRIERS TO LUPUS TREATMENT AND CARE AS PART OF THE FOUNDATION'S ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT. THE ALPHA PROJECT WAS LAUNCHED IN 2018 AS A GLOBAL, MULTI-PHASE, CONSENSUS-DRIVEN INITIATIVE SEEKING TO IDENTIFY AND PRIORITIZE TOP URGENT AND UNMET ISSUES IN LUPUS DRUG DEVELOPMENT, CLINICAL CARE, ACCESS AND VALUE OF CARE. THE PROJECT REACHED A SIGNIFICANT MILESTONE THIS YEAR WITH THE PUBLICATION OF THE GLOBAL CONSENSUS ON THE BARRIERS TO DRUG DEVELOPMENT WHICH RECEIVED NEARLY 4,000 ABSTRACT AND PUBLICATION DOWNLOADS AND MEDIA COVERAGE IN AT LEAST 6 TOP TRADE MEDIA PUBLICATIONS.- THE LFA SIGNED A 6TH YEAR AMENDMENT WITH FNIH AND IS ON THE AMP STEERING COMMITTEE WHICH IS IN THE PROCESS OF DETERMINING WHAT THE NEXT PHASE OF AMP 2.0 WILL LOOK LIKE. THE FOUNDATION ADVOCATES FOR MORE FOCUS ON LUPUS RESEARCH AND EXPANDING THE SCOPE TO NOT ONLY LUPUS NEPHRITIS, BUT OTHER AREAS SUCH AS NEUROPSYCHIATRIC LUPUS (NPSLE).- 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. IT HAS BEEN ACCEPTED FOR AN IMPACT FACTOR, HAS BEGUN PODCASTS, AND HAD THE MOST SUBMISSIONS OF ANY YEAR IN 2020. - CONTINUED MULTI-YEAR EFFORTS WHICH EXPLORE MESENCHYMAL STEM CELLS AS A POTENTIAL TREATMENT FOR PEOPLE WITH THE DISEASE. ALL CLINICAL SITES ARE CURRENTLY ENROLLING PARTICIPANTS AND THE STUDY IS EXPECTED TO FINISH ON TIME ACCORDING TO THE TIMELINE DEVELOPED IN COOPERATION WITH STUDY PARTNER THE NATIONAL INSTITUTE FOR ALLERGY AND INFECTIOUS DISEASES (NIAID).- 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.- PROVIDED NEW FUNDING TO ADDRESS ISSUES CRITICALLY IMPORTANT TO PEOPLE WITH LUPUS. THIS YEAR, THREE OF OUR 10 NEW CAREER DEVELOPMENT AWARD GRANTEES ARE FOCUSING THEIR STUDIES ON LUPUS-RELATED KIDNEY DISEASE (LUPUS NEPHRITIS), AN INCREDIBLY IMPORTANT AREA OF LUPUS RESEARCH. 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. THIS PAST YEAR, WE EXPANDED AND LAUNCHED NEW INTERNATIONAL PARTNERSHIPS TO BRING THE LUPUS COMMUNITY CLOSER TOGETHER IN THIS GLOBAL FIGHT TO END LUPUS. KEY 2020 PARTNERSHIPS INCLUDE:- CONTINUE TO WORK WITH THE CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) IS THE FIRST OF ITS KIND TO CHARACTERIZE SPECIFIC RESEARCH QUESTIONS, BARRIERS AND FACILITATORS TO RESEARCH POTENTIAL APPROACHES FOR ADDRESSING THE TOP IDENTIFIED ISSUES. - THE SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC), THE PREMIER BODY OF LUPUS EXPERTS FROM THE US AND AROUND THE GLOBE, TO FUND A MULTI-YEAR EFFORT WHICH UPDATES THE SLICC DAMAGE INDEX, ONE OF THE ONLY OUTCOMES MEASURES IN LUPUS WHICH HAS BEEN ACCEPTED BY THE FDA FOR USE IN CLINICAL TRIALS. THE NEW INDEX WILL INCLUDE KEY LEARNINGS SINCE DEVELOPMENT. IT WILL ALSO INCLUDE THE DISEASE AND IMPACT OF DAMAGE ON CHILDREN SO THAT IT MAY BE USED IN PEDIATRIC TRIALS IN THE FUTURE.- A FIRST-EVER PARTNERSHIP WITH LUPUS CANADA TO MANAGE THEIR GRANT MECHANISM, LUPUS CANADA CATALYST GRANT.THE AWARD PROVIDES FUNDING FOR ONE YEAR TO CANADIAN RESEARCHERS AT ANY STAGE IN THEIR CAREER.- THE COVID-19 GLOBAL RHEUMATOLOGY ALLIANCE'S REGISTRY, WHICH IS AN IMPORTANT INTERNATIONAL EFFORT THAT COLLECTS DE-IDENTIFIED INFORMATION FROM CLINICIANS AND PEOPLE WITH RHEUMATIC DISEASES, SUCH AS LUPUS. THE INFORMATION COLLECTED IN THE REGISTRY WILL HELP EVALUATE THE RISK OF COVID-19 AND IMPROVE THE WAY DOCTORS MANAGE RHEUMATIC PATIENTS DURING THIS TIME.- THE FOUNDATION IS WORKING ON AN AGREEMENT TO FULLY SUPPORT THE REMAINDER OF THE PHASE II TRIAL, IMPACT (IMPROVE PREGNANCY IN APS WITH CERTOLIZUMAB THERAPY), FOR THE NEXT THREE YEARS. IMPACT IS THE FIRST TRIAL OF A BIOLOGIC THERAPY TO PREVENT ADVERSE PREGNANCY OUTCOMES IN HIGH-RISK PREGNANCIES IN PATIENTS WITH APS WITH OR WITHOUT SLE AND WAS INITIALLY FUNDED BY NIAMS. FUNDING FROM NAIMS ENDED IN JULY 2020, AND THE FOUNDATION IS CURRENTLY WORKING ON AN AGREEMENT WHICH WILL FULLY SUPPORT THE REMAINDER OF THE PHASE 2 TRIAL OVER THE NEXT THREE YEARSTHROUGH OUR ADVOCACY EFFORTS IN 2020, WE HAVE:- HOSTED THE FIRST EVER DIGITAL ADVOCACY SUMMIT, BRINGING TOGETHER NEARLY 3,000 LUPUS ADVOCATES TO PARTICIPATE IN TWO DAYS OF PROGRAMMING TO EDUCATE THEM ABOUT THE TOP ISSUES IN LUPUS RESEARCH AND ADVOCACY AND JOIN TOGETHER IN ONLINE MEETINGS WITH MEMBERS OF CONGRESS.- SECURED AN ADDITIONAL $9.5 MILLION, A $1 MILLION INCREASE OVER FY20, TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE CDC IN FY21, BRINGING TOTAL FUNDING FOR THE PROGRAM TO $81.8 MILLION.- SECURED AN ADDITIONAL $10 MILLION IN FUNDING FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, FOR A TOTAL OF NEARLY $57 MILLION. - SECURED AN ADDITIONAL $2,000,000 FOR THE OFFICE OF MINORITY HEALTH'S LUPUS PROGRAM TO SUPPORT A GRANT MECHANISM SPECIFICALLY FOCUSED ON ADDRESSING THE BARRIERS TO MINORITY PARTICIPATION IN CLINICAL TRIALS.- ADVOCATED FOR AND SECURED A $1.25 BILLION INCREASE FOR THE NATIONAL INSTITUTES OF HEALTH, THE LARGEST PUBLIC FUNDER OF LUPUS RESEARCH IN THE WORLD. - PROTECTED ACCESS TO HYDROXYCHLOROQUINE FOR PEOPLE WITH LUPUS AMID THE COVID-19 PANDEMIC BY WORKING WITH THE FOOD AND DRUG ADMINISTRATION, THE WHITE HOUSE CORONAVIRUS TASK FORCE, CONGRESS, STATE OFFICIALS, THE MANUFACTURERS OF HYDROXYCHLOROQUINE AND OTHERS, INCLUDING FACILITATING MORE THAN 138,000 MESSAGES TO MEMBERS OF CONGRESS FROM LUPUS ADVOCATES.- PARTNERED WITH LEADING NATIONAL PATIENT ORGANIZATIONS TO FORM THE PROTECTING THE IMMUNOCOMPROMISED COLLABORATIVE TO ADVOCATE STATE AND FEDERAL POLICIES THAT RECOGNIZE THE UNIQUE NEEDS OF PEOPLE LIVING WITH LUPUS DURING THE COVID-19 PANDEMIC, INCLUDING POLICIES RELATED TO VACCINES, THERAPIES, REOPENING, ACCESS TO HEALTH CARE AND OTHER PUBLIC HEALTH INITIATIVES AND GUIDELINES.. - CONTINUED TO ELEVATE THE PATIENT VOICE IS DRUG DEVELOPMENT AND REGULATORY DECISION-MAKING, PROVIDING THE PUPUS PATIENT PERSPECTIVE TO CONGRESS AND THE FDA AS THEY MOVE FORWARD WITH THE REAUTHORIZATION OF THE PRESCRIPTION DRUG USER FEE ACT (PDUFA) AND PATIENT FOCUSED DRUG DEVELOPMENT. - ESTABLISHED A MARKET ACCESS WORKING GROUP, CONSISTING OF PEOPLE WITH LUPUS AND KEY OPINION LEADERS, WORKING TO DEVELOP SOLUTIONS THAT OVERCOME BARRIERS TO CARE AND ENSURE ACCESS, INCLUDING THROUGH ADVOCACY WORK RELATED TO INSURANCE, COST AND COVERAGE, HEALTH DISPARITIES AND VALUE ASSESSMENTS/THE INSTITUTE FOR CLINICAL AND ECONOMIC REVIEW (ICER) AMONG OTHERS., - CONTINUED TO LEAD THE MAPRX COALITION, A GROUP OF MORE THAN 60 NATIONAL PATIENT ADVOCACY ORGANIZATIONS DEDICATED TO PROTECTING AND STRENGTHENING THE MEDICARE PART D PRESCRIPTION DRUG BENEFIT.- BUILT A NETWORK OF NEARLY 40,000 GRASSROOTS ADVOCATES, FROM EVERY STATE AND ALL 435 CONGRESSIONAL DISTRICTS, DEDICATED TO ADVANCING LUPUS PUBLIC POLICY PRIORITIES. 705225 1939 PATIENT EDUCATION AND SUPPORT: WE PROVIDED EDUCATION, SUPPORT AND OTHER ASSISTANCE TO INDIVIDUALS WITH LUPUS, THEIR FAMILIES AND CAREGIVERS. THIS YEAR, THE ONSET OF THE COVID-19 PANDEMIC CREATED EVEN MORE QUESTIONS AND CONCERNS FOR PEOPLE WITH LUPUS ABOUT THE FUTURE AND HOW TO HANDLE EVERYDAY LIFE. WE TOOK NUMEROUS STEPS THROUGHOUT THE YEAR TO HELP PEOPLE AFFECTED BY LUPUS NAVIGATE THE PANDEMIC, WHILE CONTINUOUSLY ADAPTING TO THE CURRENT NEEDS AND EVOLVING SITUATION.DUE TO THE CURRENT PANDEMIC, IN-PERSON EDUCATIONAL PROGRAMS SUCH AS LUPUS: LEARNING AND LIVING, AS WELL AS OUR SUPPORT GROUPS, SHIFTED FROM IN-PERSON TO VIRTUAL. OVER 30 VIRTUAL EDUCATIONAL EVENTS WERE HELD ACROSS THE COUNTRY AND COMPLETED ATTENDEE EVALUATIONS FEATURE POSITIVE FEEDBACK IN REGARDS TO EASE OF ACCESS, VALUE AND RELEVANCE CONTENT, AND THE ABILITY TO CONNECT WITH OTHERS. WE CONTINUE TO GENERATE EDUCATIONAL CONTENT IN A VARIETY OF FORMATS, LANGUAGES, AND TOPICS IMPORTANT TO PEOPLE WITH LUPUS INCLUDING TIMELY INFORMATION ON THE COVID-19 PANDEMIC. IN 2020, WE DEVELOPED AND CONTINUOUSLY UPDATED A CORONAVIRUS AND LUPUS LANDING PAGE WHICH FEATURED THE LATEST NEWS AND INFORMATION REGARDING THE DISEASE, SAFETY PRECAUTIONS AND DEVELOPING VACCINES. OUR NATIONAL HEALTH EDUCATION SPECIALISTS RESPONDED TO MORE THAN 3,000 TELEPHONE, EMAIL AND HANDWRITTEN INQUIRIES IN BOTH ENGLISH AND SPANISH AND 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. ADDITIONALLY, OUR INFORMATIONAL LUPUS PACKET WAS REFORMATTED TO A DIGITAL DOWNLOADABLE VERSION, WHICH EXPERIENCED A TOTAL OF 2,817 UNIQUE DOWNLOADS. IN 2020, THE EXPERT SERIES, OUR MONTHLY PATIENT EDUCATION SERIES WHERE LUPUS EXPERTS OFFER INSIGHT ON A VARIETY OF IMPORTANT TOPICS, TRANSITIONED INTO A PODCAST FORMAT. NEW EPISODES ARE RELEASED MONTHLY (EACH MONTH ON THE THIRD THURSDAY) ON LUPUS.ORG, YOUTUBE AND MULTIPLE PODCAST PLATFORMS INCLUDING ITUNES AND SPOTIFY. THE PODCAST HAS OVER 3,600 SUBSCRIBERS AND OVER 6,700 PLAYS. WE HAVE ALSO EXPERIENCED GLOBAL GROWTH WITH THE SERIES HAVING TOP LISTENERS IN THE UNITED STATES, AUSTRALIA AND THE UNITED KINGDOM. 8211 25 137856 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 2020, 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 CONTINUED TO WORK WITH THE AAFP TO DISTRIBUTE THE CME ACTIVITY "MANAGEMENT OF LUPUS: COORDINATING YOUR APPROACH"WE DEVELOPED IN PARTNERSHIP WITH THEM IN 2019. CME TOPICS INCLUDED: RECOGNIZING THE SIGNS AND SYMPTOMS OF SYSTEMIC LUPUS ERYTHEMATOSUS (SLE); OPTIMIZING THE MANAGEMENT APPROACH FOR PATIENTS WHO HAVE SLE BY COMBINING APPROPRIATE EVIDENCE-BASED TREATMENT AND COORDINATION OF CARE WITH OTHER HEALTH CARE PROVIDERS; AND ENGAGING PATIENTS WHO HAVE SLE AS STAKEHOLDERS IN THEIR OWN CARE THROUGH IMPROVED COMMUNICATION, CONSIDERATION OF PATIENT PREFERENCES, SHARED DECISION MAKING, AND PATIENT EDUCATION. OVERALL, 86.4% OF LEARNERS WHO COMPLETED THE CME INDICATED THEY WOULD MAKE BEHAVIORAL CHANGE AS A RESULT OF COMPLETING THE ACTIVITY. MORE THAN 499 HEALTHCARE PROFESSIONALS HAVE COMPLETED THE COURSE SINCE IT'S LAUNCH IN SEPTEMBER 2020. AAFP IS CONTINUING TO SHARE THE PROGRAM TO REACH ADDITIONAL PROVIDERS IN THE COMING YEAR. OUR PARTNERSHIP WITH AAFP GREW IN 2020. WE WORKED TO DEVELOP CO-BRANDED RESOURCES, INCLUDING FACT SHEETS AND A LUPUS CARE MANAGEMENT PLAN, TO HELP BOTH FAMILY PHYSICIANS AND THE PATIENTS THEY TREAT REDUCE THE TIME IT CAN TAKE TO RECEIVE AN ACCURATE LUPUS DIAGNOSIS. THESE RESOURCES HAVE BEEN SHARED VIA AAFP AND LFA COMMUNICATIONS VEHICLES, AND WILL CONTINUE TO REACH ADDITIONAL INDIVIDUALS IN THE MONTHS AHEAD. OUR MULTIDISCIPLINARY 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. IN 2019 WE LAUNCHED INSIDE LUPUS RESEARCH, AN ONLINE SOURCE FOR LEARNING THE LATEST AND MOST IMPORTANT LUPUS RESEARCH NEWS. WE ARE REPORTING ON 9-12 RESEARCH NEWS ARTICLES PER MONTH. IN 2020 WE PROVIDED MORE THAN 6,000 PEOPLE INSIDE LUPUS RESEARCH (ILR) BI-WEEKLY EMAIL UPDATES. 713436 1964 137856 11468973 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 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 49 0 1 64 1 0 0 0 0 0 1 1 0 0 0 1 0 0 0 X 19 19 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 JULIE TUNE 2023491155 2121 K STREET NW NO 200 WASHINGTON DC 20037 STEVAN W GIBSON PRESIDENT & CEO 40.00 X 301678 0 23099 SANDRA C RAYMOND SENIOR ADVISOR 40.00 1.00 X 226222 0 31437 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 40.00 X 208500 0 26278 LESLIE HANRAHAN VP, EDU. & RESEARCH - UNTIL 03/20 40.00 X 206731 0 26172 DONNA GROGAN VP, DEV. & FUNDRAISING - UNTIL 06/20 40.00 X 199038 0 21681 SEUNG-AE CHUNG CFO - UNTIL 11/2019 40.00 0.25 X 197846 0 16240 JEANINE SMITH VP, NETWORK DEVELOPMENT 40.00 X 178880 0 18114 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT 40.00 X 175436 0 16400 SUSAN J GLOOR REGIONAL DIRECTOR, NE 40.00 X 150130 0 16524 LEIGH ANN CARDENAS VP, INDIVIDUAL GIVING 40.00 X 142088 0 10438 MATTHEW SCELZA REGIONAL DIRECTOR, CA 40.00 X 126999 0 8223 REID DOSSINGER DIRECTOR OF DIGITAL STRATEGY 40.00 X 125505 0 4797 DESIREE WIENAND DIRECTOR, CORPORATE ENGAGEMENT 40.00 X 121063 0 7744 JULIE TUNE CFO - AS OF 11/2019 40.00 0.25 X 22546 0 0 SUSAN MANZI CHAIR 5.00 X X 0 0 0 JOSEPH A ARNOLD ESQ VICE CHAIR 5.00 X X 0 0 0 ANDREW BROPHY TREASURER 5.00 X X 0 0 0 BARBARA POLK SECRETARY 5.00 X X 0 0 0 JANINE ALLEN DIRECTOR 1.00 X 0 0 0 JUDY BARLIN DIRECTOR 1.00 X 0 0 0 LYNN BLANDFORD DIRECTOR 1.00 X 0 0 0 LINDSAY CAFRITZ DIRECTOR 1.00 X 0 0 0 KAREN COSTENBADER MD MPH DIRECTOR 1.00 X 0 0 0 CONRAD GEHRMAN DIRECTOR 1.00 1.00 X 0 0 0 JANE HAWLEY 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 TIM NOLAN DIRECTOR 1.00 X 0 0 0 CHERI PERRON DIRECTOR 1.00 X 0 0 0 CAROL ANN PETREN DIRECTOR - UNTIL 06/2020 1.00 X 0 0 0 STEPHEN RABINOWITZ 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 - UNTIL 06/2020 1.00 X 0 0 0 HALLIE VANDERHIDER DIRECTOR - UNTIL 06/2020 1.00 X 0 0 0 AMY YALDEN DIRECTOR 1.00 X 0 0 0 2382662 0 227147 18 0 1 0 THE HERALD GROUP LLC 1800 M STREET NW SUITE 450 SOUTH WASHINGTON DC 20036 COMMUNICATIONS, MARKETING, OUTREACH AND 1175000 GLS COMPANIES PO BOX 1450 MINNEAPOLIS MN 55486 POSTAGE AND MAILHOUSE SERVICES 837091 PRODUCTION SOLUTIONS 1953 GALLOWS ROAD VIENNA VA 22182 PRODUCTION/DESIGN OF MAILINGS 429660 BLACKBAUD PO BOX 930256 ATLANTA GA 31193 DATA MANAGEMENT AND DEVELOPMENT 313037 PRO-CHANGE BEHAVIOR SYSTEM LLC 1174 KINGSTOWN ROAD SUITE 101 SOUTH KINSTOWN RI 02879 RESEARCH CONSULTING SERVICES 283189 17 105280 134156 300000 1271409 9150923 91146 10961768 PROG. 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RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 47306 47306 13622706 13670012 833501 208375 0 0 807522 926440 988962 833501 3556425 5334638 71597 49884 61406 47306 230193 201881 231610 247241 208375 889107 1333661 45252 45252 379279 30200 4637 404842 377127 4745 2593 379279 359750 21234 3857 377127 338723 24657 2253 1377 359750 327808 15228 3344 969 338723 1.00000 1 0 1061513 322081 739432 427704 332116 95588 464221 383034 81187 916207 CAPITAL LEASE OBLIGATIONS 10188 DEFERRED LEASE INCENTIVE 700795 DEFERRED RENT 764200 1475183 X 12067350 24658 58185 82843 11984507 0 11984507 13835597 58185 58185 13777412 0 13777412 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, 2020 AND 2019, 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. PART XI, LINE 2D - OTHER ADJUSTMENTS: ADDITIONAL SPECIAL EVENT EXPENSE 58,185. PART XII, LINE 2D - OTHER ADJUSTMENTS: ADDITIONAL SPECIAL EVENT EXPENSE 58,185. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 6 PROGRAM SERVICES CONSULTING 38667 NORTH AMERICA 0 0 GRANTMAKING 168546 0 6 0 0 0 6 207213 0 207213 NORTH AMERICA RESEARCH GRANT 140000 CHECK NORTH AMERICA RESEARCH GRANT 24546 CHECK 2 0 1 0 0 0 0 0 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. 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. PART III ACCOUNTING METHOD: X X X X X X X 1 JOHN MINI CONSULTING INC 707 SAVANNAH ROAD LEWES DE 199581521 DIRECT MAIL 0 773015 67400 705615 THE WEBSTER GROUP 5185 MACARTHUR BOULEVARD NW 250 WASHINGTON DC 20016 GALA PRODUCTION & MGMT 0 0 40000 -40000 773015 107400 665615 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 227906 134156 93750 91810 20000 58052 227906 134156 93750 91810 20000 58052 169862 -76112 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. 1 MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVENUE SUITE 805 CHARLESTON SC 29425 576000722 501(C)(3) 756000 STEM CELL RESEARCH CINCINNATI CHILDREN'S HOSPITAL 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 140000 CAREER DEVELOPMENT AWARD NORTHWESTERN UNIVERSITY 240 EAST HURON CHICAGO IL 60611 362167817 501(C)(3) 140000 CAREER DEVELOPMENT AWARD THE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 70000 CAREER DEVELOPMENT AWARD 4 0 FELLOWSHIP AWARDS 5 20000 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 STEVAN W GIBSON PRESIDENT & CEO 300809 0 0 0 869 0 14000 0 9099 0 324777 0 0 0 SANDRA C RAYMOND SENIOR ADVISOR 225611 0 0 0 611 0 20250 0 11187 0 257659 0 0 0 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 207751 0 0 0 749 0 18636 0 7642 0 234778 0 0 0 LESLIE HANRAHAN VP, EDU. & RESEARCH - UNTIL 03/20 206030 0 0 0 701 0 19041 0 7131 0 232903 0 0 0 DONNA GROGAN VP, DEV. & FUNDRAISING - UNTIL 06/20 198289 0 0 0 749 0 14039 0 7642 0 220719 0 0 0 SEUNG-AE CHUNG CFO - UNTIL 11/2019 197846 0 0 0 0 0 16036 0 204 0 214086 0 0 0 JEANINE SMITH VP, NETWORK DEVELOPMENT 178011 0 0 0 869 0 9015 0 9099 0 196994 0 0 0 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT 174687 0 0 0 749 0 9018 0 7382 0 191836 0 0 0 SUSAN J GLOOR REGIONAL DIRECTOR, NE 149314 0 0 0 816 0 7425 0 9099 0 166654 0 0 0 LEIGH ANN CARDENAS VP, INDIVIDUAL GIVING 141464 0 0 0 624 0 3548 0 6890 0 152526 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 1200 FAIR MARKET VALUE X 51 23290 FAIR MARKET VALUE X 11 66656 FAIR MARKET VALUE 0 1 0 PART I, COLUMN (B): THE FOUNDATION REPORTS THE NUMBER OF CONTRIBUTIONS IN PART I, COLUMN (B). 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. 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