2023-08-08T11:08:54-05:00 2022-09-30 111986323 MARCUM LLP 1899 L STREET NW SUITE 850 WASHINGTON DC 20036 990 2021-10-01 431131436 LUPUS FOUNDATION OF AMERICA INC LUPU 2023491155 2121 K STREET NW 200 WASHINGTON DC 20037 JULIE TUNE CHIEF FINANCIAL OFFICER 2023491155 2023-08-07 1 JULIE TUNE 999009999 AARON M FOX P01365820 2022274000 2023-08-07 3 AAL1 IAL1 2021 2023-04-26 12:10:37Z JULIE TUNE 2121 K STREET NW 200 WASHINGTON DC 20037 17368419 0 X WWW.LUPUS.ORG X 1977 DC IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS THROUGH RESEARCH, EDUCATION, SUPPORT AND ADVOCACY. 14 14 66 3085 0 0 12393471 15265716 2592352 1211689 3634 18304 34086 768256 15023543 17263965 1528584 1735150 0 0 6614574 7046431 64550 158660 1293823 6519460 6478166 14727168 15418407 296375 1845558 8838757 9829433 4862366 4078827 3976391 5750606 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 5423434 308996 PUBLIC INFORMATION AND EDUCATION:THE LUPUS FOUNDATION OF AMERICA (FOUNDATION) CONDUCTS PROGRAMS TO INCREASE AWARENESS AND UNDERSTANDING OF LUPUS AND ITS CONSEQUENCES TO IMPROVE EARLY DIAGNOSIS AND TREATMENT. IN 2022, THE FOUNDATION CONTINUED TO EXPAND ITS REACH THROUGH ITS WEBSITE, ONLINE EDUCATION PROGRAMS, AWARENESS CAMPAIGNS, SOCIAL MEDIA MARKETING, CELEBRITY ENGAGEMENT, AND COMMUNITY PARTNERSHIPS. OUR WEBSITE IS THE LEADING SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN ONLINE AUDIENCE OF MORE THAN 11 MILLION VISITS ANNUALLY. OUR SOCIAL MEDIA CHANNELS HAVE 414,000 COMBINED FOLLOWERS ACROSS THE SIX MOST-POPULAR SOCIAL PLATFORMS CHANNELS.WE CREATED AND EXECUTED MULTIPLE SOCIAL MEDIA CAMPAIGNS AS PART OF OUR "SPOTLIGHT SERIES" TO CALL ATTENTION TO THE UNIQUE IMPACT OF LUPUS AMONG DIFFERENT POPULATIONS AND AUDIENCES, SHARING IMPORTANT RESOURCES AND CALLING ATTENTION TO HEALTH DISPARITIES.DURING LUPUS AWARENESS MONTH IN MAY THE FOUNDATION HIGHLIGHTED MANY OF THE OFTEN-INVISIBLE WAYS LUPUS IMPACTS EVERYDAY LIFE. OUR EFFORTS TO RAISE AWARENESS SPANNED SOCIAL MEDIA, EMAIL AND WE EVEN SECURED NATIONAL TV SEGMENTS ON NBC'S TODAY SHOW AND TELEMUNDO'S HOY DA. THE FOUNDATION ALSO SPEARHEADED THE ANNUAL GLOBAL OBSERVANCE OF WORLD LUPUS DAY ON MAY 10. WE DEVELOPED AND EXECUTED A WORLD-WIDE "MAKE LUPUS VISIBLE" SOCIAL MEDIA CAMPAIGN TO SHARE IMPORTANT LUPUS EDUCATION FACTS, LEVERAGED THROUGH THE SHARING OF VARIOUS TOOLS, MESSAGES AND IMAGES TO SUCCESSFULLY RAISE AWARENESS OF LUPUS AND ITS IMPACT ON A GLOBAL SCALE.MORE THAN 110 CONTENT CREATORS JOINED US FOR GAME ON! TO END LUPUS, OUR THREE DAY LIVE STREAM EVENT WHERE STREAMERS FROM AROUND THE WORLD RAISE AWARENESS OF LUPUS AND FUNDS FOR LUPUS RESEARCH. 3417709 72500 182206 NETWORK SUPPORT AND SERVICES:THE FOUNDATION'S NATIONAL NETWORK INCLUDES CHAPTERS, REGIONAL OFFICES, AMBASSADORS, AND SUPPORT GROUPS ACROSS THE UNITED STATES. NETWORK AFFILIATES CONDUCT EDUCATION PROGRAMS, SUPPORT RESEARCH, AND PROVIDE INFORMATION, SUPPORT AND ADVOCACY TO IMPROVE THE QUALITY OF LIFE FOR THOSE AFFECTED BY LUPUS AND LESSEN THE IMPACT OF LUPUS.THE FOUNDATION PROVIDES NETWORK AFFILIATES WITH CAPACITY-BUILDING SERVICES, ORGANIZATIONAL DEVELOPMENT, STRATEGIC SUPPORT, TRAINING, AND CONSULTATION. OUR AMBASSADOR PROGRAM CONTINUES TO GROW, AND PLAYS A VITAL ROLE IN SUPPORTING THE FOUNDATION'S MISSION. WE HAVE OVER 170 TRAINED AMBASSADORS WHO PROVIDE COMMUNITY-BASED PEER-TO-PEER EDUCATION AND SUPPORT.THE FOUNDATION ALSO PROVIDES OVERSIGHT AND RESOURCES TO MORE THAN 55 NATIONAL SUPPORT GROUPS AND 75 TRAINED SUPPORT GROUP FACILITATORS WHO SERVE CONSTITUENTS NATIONWIDE. IN 2022, THE FOUNDATION EXPANDED ITS SUPPORT GROUPS TO SERVE KEY POPULATIONS IMPACTED BY LUPUS. THESE GROUPS INCLUDE: MALES WHO ARE LIVING WITH LUPUS, A YOUTH GROUP FOR INDIVIDUALS UNDER AGE 25, A HISPANIC SUPPORT GROUP WHICH OFFERS HELP IN ENGLISH AND SPANISH, AN ASIAN SUPPORT GROUP THAT PROVIDES HELP THROUGHOUT THE COUNTRY AS WELL AS INTERNATIONALLY, CAREGIVERS AND CARE PARTNERS FOR LUPUS PATIENTS, AND A GROUP FOR BLACK WOMEN WHO ARE LIVING WITH LUPUS. DUE TO THE PANDEMIC, WE CONVERTED ALL SUPPORT GROUPS TO VIRTUAL GATHERINGS, ALLOWING GREATER ACCESS TO THIS VALUABLE RESOURCE NEEDED NOW MORE THAN EVER.THE FOUNDATION CONTINUES ITS LEADERSHIP ROLE OF THE WORLD LUPUS FEDERATION, A GLOBAL COALITION OF ROUGHLY 250 LUPUS PATIENT ADVOCACY GROUPS FROM 75 COUNTRIES. THE FEDERATION'S MISSION IS TO ADVANCE LUPUS AWARENESS AND ADVOCACY INITIATIVES THAT BRING GREATER ATTENTION AND RESOURCES TO THE FIGHT TO END LUPUS WORLDWIDE. IN 2022, THE WORLD LUPUS FEDERATION CONDUCTED A GLOBAL SURVEY TO UNDERSTAND THE IMPACT OF LUPUS ON THE BODY'S ORGANS. MORE THAN 6,700 PEOPLE WITH LUPUS FROM OVER 100 COUNTRIES PARTICIPATED IN THE SURVEY. AMONG THE FINDINGS, 87% REPORTED LUPUS HAS IMPACTED ONE OR MORE MAJOR ORGANS OR ORGAN SYSTEMS, AND NEARLY THREE QUARTERS OF RESPONDENTS REPORTED AN AVERAGE OF THREE ORGANS AFFECTED.THE FOUNDATION ALSO ENGAGED WITH VOLUNTEERS AND SUPPORTERS THROUGHOUT THE UNITED STATES. FOR THE FIRST TIME SINCE 2019, THE WALK TO END LUPUS NOW EVENTS WERE HELD IN-PERSON IN OVER 19 MARKETS ACROSS THE COUNTRY. BEING BACK IN-PERSON ALLOWED FOR IMPORTANT CONNECTION AND ENGAGEMENT AMONG WALK PARTICIPANTS, SPONSORS AND VOLUNTEERS, AS WELL AS THE OPPORTUNITY TO RAISE AWARENESS AND FUNDS VITAL TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS. IN ADDITION, A VIRTUAL 'CELEBRATION' WAS HELD TO ALLOW FOR PARTICIPATION FROM ACROSS THE COUNTRY, INCLUDING THOSE NOT COMFORTABLE PARTICIPATING IN-PERSON, OR THOSE WITHOUT A WALK IN THEIR LOCAL COMMUNITY. THE "VIRTUAL 6 CHALLENGE," 6 DAYS TO COMPLETE 6 MILES, REPLACED THE FOUNDATION'S IN-PERSON ENDURANCE PROGRAM, "TEAM MAKE YOUR MARK AND CONTINUES TO PROVIDE A UNIQUE OPPORTUNITY FOR PARTICIPANTS FROM ALL ACROSS THE COUNTRY TO PARTICIPATE IN A WAY THAT BEST MATCHES THEIR AREA OF INTEREST. 3292132 1662650 710487 RESEARCH:OUR NATIONAL RESEARCH PROGRAM SEEKS TO SOLVE SCIENTIFIC PROBLEMS THAT FOR DECADES HAVE STALLED PROGRESS IN LUPUS RESEARCH, TREATMENT DEVELOPMENT AND ACCESS, AND PATIENT CARE. THROUGHOUT THE YEAR, WE AGGRESSIVELY PURSUED STRATEGIES TO INCREASE FEDERAL, STATE, AND INDUSTRY SUPPORT FOR LUPUS RESEARCH, FACILITATED STRATEGIC COLLABORATIONS, LED GLOBAL ALLIANCES TO DRIVE CONSENSUS, AND PROVIDED DIRECT FINANCIAL SUPPORT TO RESEARCHERS THROUGH THE FOUNDATION'S PEER-REVIEWED RESEARCH GRANT PROGRAMS. THESE EFFORTS LAY THE GROUNDWORK FOR LUPUS RESEARCH LEADING TO SIGNIFICANT TREATMENT BREAKTHROUGHS.THROUGH OUR DIRECT FUNDING SUPPORT AND VARIOUS FOUNDATION INITIATIVES, WE INVESTED OVER $1.0 MILLION TO FUND PEER-REVIEWED RESEARCH GRANTS, AWARDS TO INVESTIGATORS, RESEARCH PARTNERSHIPS, AND COLLABORATIVE PROJECTS.AS PART OF OUR RESEARCH FUNDING EFFORTS, THE FOUNDATION ALSO WORKED WITH CONGRESS TO SECURE MORE THAN $22 MILLION IN PUBLIC FUNDING FOR LUPUS RESEARCH AND EDUCATION PROGRAMS. THE FOUNDATION ALSO HELPED SECURE A $2.5 BILLION INCREASE IN FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH.THE FOUNDATION CONTINUES TO LEAD INITIATIVES TO OVERCOME BARRIERS THAT INHIBIT PROGRESS IN DEVELOPING AND APPROVING NEW, EFFECTIVE AND TOLERABLE TREATMENTS FOR PEOPLE WITH LUPUS, INCLUDING:- RECRUITING MORE THAN 500 NEW PEOPLE WITH LUPUS AND CAREGIVERS TO PARTICIPATE IN RESEARCH ACCELERATED BY YOU (RAY), A LUPUS DATA PLATFORM FOR PEOPLE WITH LUPUS AND CAREGIVERS TO SHARE ANONYMOUS INFORMATION ABOUT THEIR LUPUS EXPERIENCE. WE ALSO WORKED TO INCREASE DIVERSE REPRESENTATION WITHIN RAY BY USING EVIDENCE-BASED APPROACHES TO RECRUITMENT. THE RAY DATA PLATFORM WAS UPGRADED IN 2022 TO COLLECT DATA OVER THE LIFESPAN OF THE PARTICIPANT WHICH WILL ENHANCE OUR CAPABILITIES TO ASSESS THE NATURAL HISTORY OF DISEASE AND ASCERTAIN ADDITIONAL INSIGHTS ABOUT A PERSON'S JOURNEY WHILE LIVING WITH LUPUS. THE DATA PLATFORM SERVES AS A CONDUIT TO HELP RESEARCHERS ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND IMPROVE DISEASE OUTCOMES USING PATIENT-FIRST AND PATIENT-CENTRIC APPROACHES.- SUPPORTING A MULTI-YEAR STUDY OF MESENCHYMAL STROMAL CELLS AS A POTENTIAL TREATMENT FOR LUPUS. THE MEDICAL UNIVERSITY OF SOUTH CAROLINA LEADS THE STUDY IN PARTNERSHIP WITH THE NATIONAL INSTITUTE FOR ALLERGY AND INFECTIOUS DISEASES (NIAID). ALL CLINICAL SITES CONTINUE TO ENROLL PARTICIPANTS, AND INVESTIGATORS EXPECT TO FINISH THE STUDY ON TIME.- LEADING THE ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT, A GLOBAL MULTI-PHASE INITIATIVE TO IDENTIFY AND ADDRESS TOP URGENT AND UNMET ISSUES THAT WILL IMPROVE LUPUS OUTCOMES. IN 2022, THE PROJECT WORK GROUPS FOCUSED ON THREE PILLARS OF NEED: ACCESS TO CARE, DRUG DEVELOPMENT, AND CLINICAL CARE. THIS YEAR, THE TEAMS ADDRESSED CRITICAL ISSUES RELATED TO TIME TO DIAGNOSIS AND EXPLORED THE BENEFITS AND NEGATIVE CONSEQUENCES OF DEFINING LUPUS AS A SPECTRUM DISEASE. THE DRUG DEVELOPMENT WORKING GROUP CONVENED A MEETING ON CLINICAL TRIAL OUTCOME MEASURES IN LUPUS THAT HIGHLIGHTED CHALLENGES IN ACCURATELY ACCOUNTING FOR LUPUS HETEROGENEITY ACROSS THE AGE CONTINUUM AND THE IMPORTANCE OF MEASURING OUTCOMES IMPORTANT TO PEOPLE LIVING WITH LUPUS. THIS WORK HAS RESULTED IN SECURING TWO TIMELY JOURNAL PUBLICATIONS THAT WILL BE PUBLISHED IN EARLY 2023.- FUNDING GRADUATE AND UNDERGRADUATE STUDENT FELLOWSHIPS AND EARLY CAREER DEVELOPMENT GRANTS TO SUPPORT A NEW GENERATION OF LUPUS CLINICIAN-SCIENTISTS. THESE AWARDS ADDRESS A SEVERE LOSS OF CURRENT AND FUTURE LUPUS INVESTIGATORS DUE TO A DECLINE IN FEDERAL TRAINING SUPPORT. THE FOUNDATION ALSO EXPANDED AND LAUNCHED NEW STRATEGIC PARTNERSHIPS WITH ORGANIZATIONS THAT PLAY A CENTRAL ROLE IN ADVANCING LUPUS SCIENCE. PART OF THE FOUNDATION'S EFFORTS AND SUPPORT FOR THESE STRATEGIC PARTNERSHIPS INCLUDED: -- FUNDING THE NEXT TWO YEARS OF THE IMPACT (IMPROVE PREGNANCY IN APS WITH CERTOLIZUMAB THERAPY) PHASE II TRIAL OF A BIOLOGIC THERAPY TO PREVENT ADVERSE OUTCOMES IN HIGH-RISK PREGNANCIES AMONG PATIENTS WITH ANTIPHOSPHOLIPID SYNDROME (APS), WITH OR WITHOUT SLE.-- FUNDING FOR SYSTEMIC LUPUS ERYTHEMATOSUS COLLABORATING CLINICS (SLICC), A GLOBAL BODY OF LUPUS EXPERTS, TO UPDATE THE SLICC DAMAGE INDEX, THE ONLY FDA-ACCEPTED OUTCOME MEASURE FOR LUPUS CLINICAL TRIALS.-- PARTNERING WITH LUPUS CANADA FOR A THIRD YEAR TO MANAGE THEIR CATALYST GRANT, WHICH PROVIDES ONE-YEAR FUNDING TO CANADIAN RESEARCHERS AT ANY STAGE IN THEIR CAREERS.THROUGH OUR ADVOCACY EFFORTS IN 2022, WE SUPPORTED LUPUS RESEARCH BY:- HOSTING THE 2022 DIGITAL ADVOCACY SUMMIT, BRINGING TOGETHER NEARLY 3,000 LUPUS ADVOCATES TO ADVOCATE FOR INCREASED RESEARCH FUNDING AND POLICIES TO IMPROVE THE LIVES OF ALL PEOPLE WITH LUPUS. DURING THE TWO-DAY PROGRAM, ADVOCATES LEARNED ABOUT THE TOP ISSUES IN LUPUS RESEARCH AND ON THE FINAL DAY OF THE SUMMIT, CONDUCTED OVER 180 DIGITAL MEETINGS WITH THEIR MEMBERS OF CONGRESS.- ADVOCATING TO SECURE $22 MILLION IN FUNDING FOR LUPUS-SPECIFIC RESEARCH AND EDUCATION PROGRAMS FOR FISCAL YEAR 2023, THE MOST FUNDING CONGRESS HAS EVER APPROVED FOR LUPUS-SPECIFIC PROGRAMS IN A SINGLE YEAR, INCLUDING AN OMNIBUS PASSED IN DECEMBER 2022 THAT INCLUDED:-- $10 MILLION TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE US CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), A $500,000 INCREASE OVER FISCAL YEAR 2022 WHICH BRINGS TOTAL FUNDING FOR THE PROGRAM TO MORE THAN $101 MILLION SINCE ITS CREATION IN 2003;-- $10 MILLION FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, BRINGING TOTAL FUNDING FOR THE PROGRAM TO OVER $76 MILLION SINCE IT WAS FIRST FUNDED IN FISCAL YEAR 2017;-- $2 MILLION FOR THE OFFICE OF MINORITY HEALTH AND THEIR NATIONAL LUPUS TRAINING, OUTREACH, AND CLINICAL TRIAL EDUCATION PROGRAM, AS WELL AS SPECIFIC LANGUAGE DIRECTING THE AGENCY TO CONTINUE EFFORTS TO INCREASE MINORITY PARTICIPATION IN LUPUS CLINICAL TRIALS;-- $47.5 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH, AN INCREASE OF $2.5 BILLION OVER THE PREVIOUS FISCAL YEAR;- LEADING A TRAINING OF THE LUPUS RESEARCH ACTION NETWORK, A GROUP OF PEOPLE WITH LUPUS WHO ARE TRAINED IN PEER-TO-PEER EDUCATION RELATED TO LUPUS CLINICAL TRIALS AND RESEARCH, WITH A SPECIFIC GOAL TO INCREASE PARTICIPATION OF MINORITIES IN LUPUS RESEARCH. THE TRAINING WAS CONDUCTED AS A KEY COMPONENT OF THE FOUNDATION'S IMPACT+ (INCREASING MINORITY PARTICIPATION AND AWARENESS IN CLINICAL TRIALS) GRANT WITH THE HHS OFFICE OF MINORITY HEALTH.- PARTNERING WITH TOP NATIONAL PATIENT ORGANIZATIONS TO LEAD THE PROTECTING THE IMMUNOCOMPROMISED COLLABORATIVE. THE COLLABORATIVE ADVOCATES FOR STATE AND FEDERAL POLICIES THAT RECOGNIZE THE UNIQUE NEEDS OF PEOPLE LIVING WITH LUPUS DURING THE COVID-19 PANDEMIC, INCLUDING VACCINES, THERAPIES, REOPENING, ACCESS TO HEALTH CARE, AND OTHER PUBLIC HEALTH INITIATIVES AND GUIDELINES. - CONTINUING TO ELEVATE THE PATIENT VOICE IN DRUG DEVELOPMENT AND REGULATORY DECISION-MAKING, PROVIDING THE LUPUS PATIENT PERSPECTIVE TO CONGRESS AND THE FDA, INCLUDING ADVOCATING FOR LEGISLATION, ENACTED IN DECEMBER 2022, TO REAUTHORIZE THE PRESCRIPTION DRUG USER FEE ACT (PDUFA), WHICH INCLUDED PROVISIONS TO INCREASE MINORITY PARTICIPATION IN CLINICAL TRIALS.- LEADING THE MARKET ACCESS WORKING GROUP, COMPRISING PEOPLE WITH LUPUS AND KEY OPINION LEADERS WORKING TO INCREASE ACCESS AND REDUCE BARRIERS TO QUALITY CARE. AS PART OF THIS EFFORT, THE FOUNDATION ENGAGED IN FEDERAL AND STATE ADVOCACY INITIATIVES, INCLUDING THOSE TO ELIMINATE HEALTH PLAN STEP THERAPY POLICIES, CO-PAY ACCUMULATORS AND OTHER POLICIES THAT RESTRICT, DELAY AND DENY PEOPLE WITH LUPUS ACCESS TO THE CARE THEY NEED, WHEN THEY NEED IT. - CONTINUING 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 FOR 44 MILLION AMERICANS WITH DISABILITIES. NOTABLY, THE COALITION ADVOCATED FOR KEY ELEMENTS OF THE INFLATION REDUCTION ACT, ENACTED IN 2022, WHICH INCLUDED SEVERAL COALITION PRIORITIES, SPECIFICALLY:-- A $2,000 OUT-OF-POCKET CAP TO LIMIT COSTS FOR THOSE ON MEDICARE PART D;-- A "SMOOTHING MECHANISM" THAT WILL ALLOW PART D BENEFICIARIES TO SPREAD HIGH-DRUG COSTS THROUGHOUT THE PLAN YEAR;-- EXPANDED ELIGIBILITY FOR THE LOW-INCOME SUBSIDY IN PART D TO INCREASE AFFORDABILITY;-- REMOVAL OF COST-SHARING FOR VACCINES IN MEDICARE PART D, A MAJOR PUBLIC HEALTH VICTORY.- SUPPORTING PROVISIONS INCLUDED IN THE INFLATION REDUCTION ACT THAT EXTENDED AFFORDABLE CARE ACT SUBSIDIES TO HELP PEOPLE WITH LUPUS ACCESS HEALTH INSURANCE.- LEADING A NETWORK OF NEARLY 40,000 GRASSROOTS ADVOCATES FROM EVERY STATE AND 435 CONGRESSIONAL DISTRICTS WHO HELPED ADVANCE LUPUS PUBLIC POLICY PRIORITIES. 471771 10000 PATIENT EDUCATION AND SUPPORT:THE FOUNDATION REMAINS THE LEADER IN LUPUS EDUCATION, AND ONCE AGAIN PROVIDED EDUCATION, SUPPORT, AND OTHER ASSISTANCE TO INDIVIDUALS WITH LUPUS, THEIR FAMILIES, AND CAREGIVERS.THE COVID-19 PANDEMIC CONTINUES TO AFFECT PEOPLE LIVING WITH CHRONIC ILLNESSES AND THOSE WHO ARE IMMUNOCOMPROMISED. WE CONTINUED TO UTILIZE OUR WEBSITE, INCLUDING THE NATIONAL RESOURCE CENTER ON LUPUS (RESOURCE CENTER) AND OTHER RESOURCES TO PROVIDE ESSENTIAL ANSWERS TO QUESTIONS FROM PEOPLE WITH LUPUS AND ADDRESS THEIR CONCERNS ABOUT THE FUTURE, THE IMPACT OF COVID ON THEIR HEALTH, AND HOW TO HANDLE EVERYDAY LIFE. THROUGHOUT THE YEAR, WE PROVIDED CLEAR, MEDICALLY-ACCURATE INFORMATION FOR PEOPLE AFFECTED BY LUPUS ON CHANGING RECOMMENDATIONS RELATED TO THE COVID-19 VACCINE, BOOSTERS AND PUBLIC HEALTH MEASURES. THIS GUIDANCE HELPS PEOPLE WITH LUPUS NAVIGATE THE PANDEMIC BY CONTINUOUSLY ADAPTING TO THEIR CURRENT NEEDS AND EVOLVING SITUATION.WE CONTINUED TO GENERATE EDUCATIONAL CONTENT IN VARIOUS FORMATS, LANGUAGES, AND TOPICS IMPORTANT TO PEOPLE WITH LUPUS. WE DEVELOPED MORE THAN 120 INFORMATION RESOURCES IN ENGLISH AND SPANISH IN THE PAST YEAR. WE PRODUCED NEW EPISODES OF OUR MONTHLY PATIENT EDUCATION PODCAST, THE EXPERT SERIES, FEATURING LUPUS EXPERTS WHO OFFER INSIGHT ON VARIOUS ESSENTIAL TOPICS. THE PODCASTS ARE ACCESSIBLE THROUGH LUPUS.ORG, YOUTUBE, ITUNES, AND SPOTIFY. THE EXPERT SERIES CONTINUED TO GROW IN 2022 WITH MORE THAN 19,000 PLAYS ACROSS ALL EPISODES. WE ALSO ENROLLED MORE THAN 1,700 PEOPLE IN TAKE CHARGE, OUR 12-WEEK EMAIL SERIES AIMED AT PROVIDING NEWLY DIAGNOSED PEOPLE WITH LUPUS WITH THE KNOWLEDGE THEY NEED TO BETTER MANAGE THEIR HEALTH.DUE TO THE PANDEMIC, EDUCATIONAL PROGRAMS, INCLUDING LUPUS AND YOU: ANSWERS, ADVOCACY, ACTION (LUPUS & YOU), AND OUR SUPPORT GROUPS, CONTINUED TO BE OFFERED ONLINE. WE CONDUCTED MORE THAN 40 VIRTUAL LUPUS & YOU EDUCATIONAL EVENTS FOCUSING ON REACHING PEOPLE IN SPECIFIC MARKETS. ALSO, IN 2022, WE INTRODUCED A NEW NATIONAL LUPUS & YOU QUARTERLY SERIES TO PROVIDE CONSTITUENTS NATIONWIDE OPPORTUNITIES TO PARTICIPATE IN THIS INFORMATIVE AND HELPFUL PROGRAM. THIS UNIQUE PROGRAM REACHED NEARLY 6,000 PARTICIPANTS.ONE OF THE MANY HIGHLIGHTS OF THE YEAR WAS THE LAUNCH OF OUR FIRST-OF-ITS-KIND ONLINE LUPUS SELF-MANAGEMENT PROGRAM CALLED STRATEGIES TO EMBRACE LIVING WITH LUPUS FEARLESSLY (SELF). SELF IS A FREE, ONLINE, EVIDENCE-BASED SELF-MANAGEMENT PROGRAM DESIGNED TO HELP PEOPLE WITH LUPUS BUILD AND ENHANCE SKILLS IN FOUR PILLARS OF LUPUS SELF-MANAGEMENT: MANAGING SYMPTOMS, MANAGING STRESS, MANAGING MEDICATIONS AND WORKING WITH THEIR HEALTHCARE TEAM. SELF WAS LAUNCHED IN JANUARY 2022 AND MORE THAN 1,600 PARTICIPANTS HAD ENROLLED THROUGH THE END OF FY 2022. OUR NATIONAL HEALTH EDUCATION SPECIALISTS RESPONDED TO 2,411 INQUIRIES VIA TELEPHONE, EMAIL, AND HANDWRITTEN INQUIRIES IN ENGLISH AND SPANISH AND DIRECTED CONSTITUENTS TO THE NATIONAL RESOURCE CENTER ON LUPUS FOR FURTHER INFORMATION TO MANAGE LUPUS. THE RESOURCE CENTER IS BEING UTILIZED CONTINUALLY AS THE FIRST STOP FOR PEOPLE SEARCHING FOR BASIC INFORMATION ON LUPUS AND LOCAL RESOURCES. ADDITIONALLY, THE LUPUS INFORMATIONAL PACKET, A DIGITAL DOCUMENT AVAILABLE IN ENGLISH AND SPANISH, HAS BEEN DOWNLOADED 6,067 TIMES. 18699 PROFESSIONAL RELATIONS AND EDUCATION:OUR PROFESSIONAL EDUCATION PROGRAMS ARE DESIGNED TO DEVELOP AND INCREASE KNOWLEDGE, SKILLS, AND PROFESSIONAL PERFORMANCE OF ALL HEALTH CARE PROVIDERS WHO TREAT PEOPLE WITH LUPUS, AND WE WORK TO TRANSLATE RESEARCH FINDINGS INTO PUBLIC HEALTH RECOMMENDATIONS FOR PHYSICIANS, OTHER HEALTHCARE PROFESSIONALS, AND THEIR RESPECTIVE ORGANIZATIONS. IN 2022, WE CONTINUED TO FOCUS ON EXPANDING PARTNERSHIPS WITH ORGANIZATIONS THAT SERVE MEDICAL AND OTHER HEALTH CARE PROFESSIONALS. IN PARTICULAR, THE FOUNDATION IN PARTNERSHIP WITH THE RHEUMATOLOGY NURSES SOCIETY AND THE OFFICE OF MINORITY HEALTH (OMH) IN THE U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES HAS DEVELOPED AN EDUCATIONAL PROGRAM FOR NURSES, LUPUS CONVERSATIONS: LET'S TALK ABOUT LUPUS, CLINICAL TRIALS, AND RACE PROGRAM, TO ADDRESS DISPARITIES IN LUPUS CLINICAL TRIAL PARTICIPATION. CLINICAL TRIALS WITH A DIVERSE ARRAY OF PARTICIPANTS ARE ESSENTIAL FOR THE DEVELOPMENT OF NEW AND EFFECTIVE LUPUS THERAPIES, BUT RACIAL AND ETHNIC MINORITY POPULATIONS HAVE BEEN AND CONTINUE TO BE UNDERREPRESENTED IN LUPUS CLINICAL TRIALS. THE EVIDENCE-BASED EDUCATIONAL PROGRAM INCLUDES A FREE CNE ACCREDITED SESSION AND ROLE-PLAY VIDEO DISCUSSING THE BARRIERS AND FACILITATORS TO CLINICAL TRIAL PARTICIPATION AMONG BLACK/AFRICAN AMERICANS. THE COURSE IS DESIGNED TO MEET THE EDUCATIONAL NEEDS OF RHEUMATOLOGY NURSES, NURSE PRACTITIONERS, AND PHYSICIAN ASSISTANTS. OTHER HEALTHCARE PROVIDERS MAY ALSO PARTICIPATE. THIS YEAR WE SAW A RECORD NUMBER OF MANUSCRIPTS SUBMITTED TO THE FOUNDATION'S PEER-REVIEWED, OPEN-ACCESS JOURNAL, LUPUS SCIENCE & MEDICINE (LS&M), WHICH PUBLISHES DATA FROM IMPORTANT AND PIVOTAL STUDIES OF ALL ASPECTS OF LUPUS AND RELATED DISEASES. IN 2022, LS&M FURTHER IMPROVED ITS IMPACT FACTOR WITH A 4.687 SCORE, WHICH IS THE HIGHEST FOR ANY LUPUS-SPECIFIC JOURNAL AND RANKS CLOSELY AMONG THE MOST PROMINENT JOURNALS IN RHEUMATOLOGY. THE IMPACT FACTOR WILL FURTHER INCREASE AUTHOR INTEREST IN SUBMITTING MANUSCRIPTS TO LS&M AND EXPAND THE FOUNDATION'S ABILITY TO SHARE MORE GROUNDBREAKING STUDIES IN THIS BARRIER-FREE FORMAT. TO FURTHER PROMOTE LS&M AND THE RESEARCH SHARED, AUTHORS OF KEY RESEARCH FINDINGS ARE INTERVIEWED DURING A MONTHLY PODCAST SERIES PRODUCED BY THE FOUNDATION. 490470 10000 12623745 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 1 1 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 32 0 1 66 1 0 0 0 0 0 0 0 0 0 1 0 0 0 X 14 14 0 0 0 0 0 1 1 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AK AL AR CA CO CT DC FL GA HI IL KS KY LA MA MD ME MI MN MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X JULIE TUNE 2023491155 2121 K STREET NW 200 WASHINGTON DC 20037 ANDREW BROPHY CHAIR 5.00 X X 0 0 0 JOSEPH A ARNOLD ESQ VICE CHAIR 5.00 X X 0 0 0 CHRISTINE SMITH TREASURER 1.00 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 X 0 0 0 JANE HAWLEY DIRECTOR 1.00 X 0 0 0 CINDY MESSERLY 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 AMY YALDEN DIRECTOR - UNTIL 12/2021 1.00 X 0 0 0 STEVAN W GIBSON PRESIDENT & CHIEF EXECUTIVE OFFICER 40.00 X 358156 0 24880 JEANINE SMITH VP, NETWORK DEVELOPMENT 40.00 X 209777 0 25006 JULIE TUNE CHIEF FINANCIAL OFFICER 40.00 1.00 X 193056 0 20645 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 40.00 X 236662 0 29088 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT 40.00 X 201502 0 18681 LEIGH ANN CARDENAS VP, INDIVIDUAL GIVING 40.00 X 187491 0 16851 MICHAEL DONNELLY VICE PRESIDENT, COMMUNICATIONS 40.00 X 177818 0 14465 SUSAN J GLOOR REGIONAL DIRECTOR, NE 40.00 X 170261 0 21627 MATT DEGOOYER SENIOR REGIONAL DIRECTOR, PNW 40.00 X 145431 0 16443 DESIREE WIENAND DIRECTOR, CORPORATE ENGAGEMENT 40.00 X 146839 0 13926 JAMES DOSSINGER DIRECTOR OF DIGITAL STRATEGY 40.00 X 142576 0 14410 2169569 0 216022 19 0 1 0 INTERACTIVE STRATEGIES LLC 1133 CONNECTICUT AVENUE NW WASHINGTON DC 20036 WEBSITE/ONLINE RELATED SERVICES 246922 FAEGRE DRINKER BIDDLE & REATH LLP 75 REMITTANCE DRIVE CHICAGO IL 60675 CONSULTING 210500 AISLE 518 STRATEGIES LLC 2108 MILITARY ROAD ARLINGTON VA 22207 CONSULTING 157078 NVG LLC 1640 RHODE ISLAND AVENUE NW WASHINGTON DC 20036 CONSULTING 120000 4 104672 600000 3008499 11552545 78279 15265716 PROG. 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OF FL CHAPTER 900099 713837 713837 REFUNDS 900099 20 20 713857 17263965 1211689 0 786560 X 1561150 1561150 34000 34000 140000 140000 1567093 1253332 230929 82832 4394336 3687009 393240 314087 224790 183409 24248 17133 86367 67308 15556 3503 773845 563715 163911 46219 49944 42623 3392 3929 67910 1175 66735 158660 158660 2050212 1922877 102432 24903 440375 440266 109 204874 103432 95586 5856 746018 609648 88063 48307 608735 518841 54394 35500 65855 50012 10110 5733 879065 683393 4426 191246 1930 1930 163830 148879 9047 5904 61412 51850 5768 3794 POSTAGE & MAILHOUSE 627801 197353 127678 302770 PRINTING & PUBLICATIONS 261982 227392 6261 28329 RECRUITMENT 105831 77312 22604 5915 BAD DEBT EXPENSE 64757 64757 77635 56839 11702 9094 15418407 12623745 1500839 1293823 X 1816229 1085782 603773 126674 2069009 3294747 3015805 2969929 1441401 1357526 229875 105606 510043 248349 1996858 1422054 732415 574804 385555 325321 454654 953151 8838757 9829433 976092 1084499 1094672 1423601 406995 308941 1008591 0 1376016 1261786 4862366 4078827 X 2094401 3639066 1881990 2111540 3976391 5750606 8838757 9829433 1845558 -71343 0 X 0 1 X 1 1 1 X 13324163 14173781 10961768 12393471 15265716 66118899 13324163 14173781 10961768 12393471 15265716 66118899 4393025 61725874 50482 124871 48732 36120 71866 332071 66450970 10829426 0.92890 0.93410 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 53293 53293 16204223 16257516 962876 240719 0 0 988962 833501 883533 962876 3668872 5503308 61406 47306 69211 53293 231216 247241 208375 220883 240719 917218 1375827 458100 -56419 1806 399875 404842 56936 3678 458100 379279 30200 4637 404842 377127 4745 2593 379279 359750 21234 3857 377127 1.00000 1 0 1061513 495300 566213 471124 462533 8591 464221 464221 0 574804 DUE FROM LAC 600000 FLORIDA CHAPTER RECEIVABLES 115174 OTHER RECEIVABLES 209424 DEPOSITS 28553 953151 DEFERRED RENT 715293 DEFERRED LEASE INCENTIVE 546493 1261786 X 18190394 -71343 1122342 1050999 17139395 124570 124570 17263965 16416179 1122342 1122342 15293837 124570 124570 15418407 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, 2022 AND 2021, 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 4B - OTHER ADJUSTMENTS: NON-FUNDRAISING EVENT EXPENSES 124,570. PART XII, LINE 4B - OTHER ADJUSTMENTS: NON-FUNDRAISING EVENT EXPENSES 124,570. 1 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTMAKING 140000 0 0 0 0 0 0 140000 0 140000 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH GRANT 140000 CHECK 0 1 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 (ACCRUAL BASIS). PART III ACCOUNTING METHOD: X X X X X X X 1 DAVINCI DIRECT INC 3 VILLAGE GREEN N SUITE 311 PLYMOUTH MA 02360 DIRECT MAIL 0 756999 110500 646499 THE WEBSTER GROUP 5185 MACARTHUR BLVD NW WASHINGTON DC 20016 EVENT PLANNING 0 172976 48160 124816 929975 158660 771315 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 1 MEDICAL UNIVERSITY OF SOUTH CAROLINA 171 ASHLEY AVENUE CHARLESTON SC 29425 576007222 IRC 115 756000 0 RESEARCH SYSTEMIC LUPUS INTERNATIONAL COLLABORATING CLINICS 4800 FRIENDSHIP AVENUE PITTSBURG PA 15224 800481892 501(C)(3) 180863 0 RESEARCH DUKE UNIVERSITY 2200 W MAIN STREET SUITE 820 DURHAM NC 27705 560532129 501(C)(3) 140000 0 RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO 490 ILLINOIS STREET 4TH FLOOR SAN FRANCISCO CA 94143 946036493 501(C)(3) 140000 0 RESEARCH COLUMBIA UNIVERSITY IRVING MEDICAL CENTER 630 WEST 168TH STREET NEW YORK NY 10031 135598093 501(C)(3) 140000 0 RESEARCH HOSPITAL FOR SPECIAL SURGERY 535 E 70TH STREET NEW YORK NY 10021 131624135 501(C)(3) 100000 0 RESEARCH THE CLEVELAND CLINIC PO BOX 931531 CLEVELAND OH 44193 340714585 501(C)(3) 10000 0 RESEARCH 7 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 STEVAN W GIBSON PRESIDENT & CHIEF EXECUTIVE OFFICER 317919 0 40000 0 237 0 14635 0 10245 0 383036 0 0 0 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 236524 0 0 0 138 0 20534 0 8554 0 265750 0 0 0 JEANINE SMITH VP, NETWORK DEVELOPMENT 209519 0 0 0 258 0 14761 0 10245 0 234783 0 0 0 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT 201364 0 0 0 138 0 10428 0 8253 0 220183 0 0 0 JULIE TUNE CHIEF FINANCIAL OFFICER 192660 0 0 0 396 0 9626 0 11019 0 213701 0 0 0 LEIGH ANN CARDENAS VP, INDIVIDUAL GIVING 187353 0 0 0 138 0 9168 0 7683 0 204342 0 0 0 MICHAEL DONNELLY VICE PRESIDENT, COMMUNICATIONS 177758 0 0 0 60 0 8523 0 5942 0 192283 0 0 0 SUSAN J GLOOR REGIONAL DIRECTOR, NE 170003 0 0 0 258 0 11382 0 10245 0 191888 0 0 0 MATT DEGOOYER SENIOR REGIONAL DIRECTOR, PNW 145173 0 0 0 258 0 6913 0 9530 0 161874 0 0 0 DESIREE WIENAND DIRECTOR, CORPORATE ENGAGEMENT 146749 0 0 0 90 0 7260 0 6666 0 160765 0 0 0 JAMES DOSSINGER DIRECTOR OF DIGITAL STRATEGY 142438 0 0 0 138 0 6727 0 7683 0 156986 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 27 22373 FAIR MARKET VALUE X 7 55906 FAIR MARKET VALUE 0 1 0 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 43,152. MANAGEMENT AND GENERAL EXPENSES 1,807. FUNDRAISING EXPENSES 429. TOTAL EXPENSES 45,388. PAYROLL SERVICES: PROGRAM SERVICE EXPENSES 14,656. MANAGEMENT AND GENERAL EXPENSES 614. FUNDRAISING EXPENSES 145. TOTAL EXPENSES 15,415. OTHER CONTRACTUAL SERVICES: PROGRAM SERVICE EXPENSES 55,186. MANAGEMENT AND GENERAL EXPENSES 2,311. FUNDRAISING EXPENSES 549. TOTAL EXPENSES 58,046. CONSULTING: PROGRAM SERVICE EXPENSES 1,707,059. MANAGEMENT AND GENERAL EXPENSES 72,615. FUNDRAISING EXPENSES 17,235. TOTAL EXPENSES 1,796,909. PUBLIC AND MEDIA RELATIONS: PROGRAM SERVICE EXPENSES 19,870. MANAGEMENT AND GENERAL EXPENSES 832. FUNDRAISING EXPENSES 198. TOTAL EXPENSES 20,900. TEMPORARY SERVICES: PROGRAM SERVICE EXPENSES 82,954. MANAGEMENT AND GENERAL EXPENSES 24,253. FUNDRAISING EXPENSES 6,347. TOTAL EXPENSES 113,554. 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