2022-05-11T14:45:56-05:00 2021-09-30 111986323 MARCUM LLP 1899 L STREET NW SUITE 850 WASHINGTON DC 20036 990 2020-10-01 431131436 LUPUS FOUNDATION OF AMERICA INC LUPU 2023491155 2121 K STREET NW NO 200 WASHINGTON DC 20037 STEVAN W GIBSON PRESIDENT & CEO 2023491155 2022-05-11 1 STEVAN GIBSON 999009999 AARON M FOX P01365820 2022274000 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z STEVAN W GIBSON 2121 K STREET NW NO 200 WASHINGTON DC 20037 15023543 0 X WWW.LUPUS.ORG X 1977 DC IMPROVE THE QUALITY OF LIFE FOR PEOPLE WITH LUPUS THROUGH RESEARCH, EDUCATION, SUPPORT AND ADVOCACY. 16 16 58 2850 0 0 10961768 12393471 1050075 2592352 35110 3634 -62446 34086 11984507 15023543 1307607 1528584 0 0 6544233 6614574 107400 64550 1021624 5818172 6519460 13777412 14727168 -1792905 296375 8259627 8838757 4633955 4862366 3625672 3976391 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 7192024 2223125 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. OUR WEBSITE IS THE LEADING SOURCE FOR LUPUS-RELATED INFORMATION, WITH AN ONLINE AUDIENCE OF MORE THAN SEVEN MILLION VISITS ANNUALLY. OUR SOCIAL MEDIA FEEDS HAVE 411,000 COMBINED FOLLOWERS ACROSS THE SIX MOST-POPULAR CHANNELS.IN 2021, THE FOUNDATION EXPANDED ITS REACH THROUGH ITS WEBSITE, ONLINE EDUCATION PROGRAMS, AWARENESS CAMPAIGNS, SOCIAL MEDIA MARKETING, CELEBRITY ENGAGEMENT, AND COMMUNITY PARTNERSHIPS.WE DEVELOPED AND TRANSLATED MORE THAN 150 INFORMATION RESOURCES INTO SPANISH OVER THE LAST YEAR, EXPANDED OUR SERVICES TO ENGAGE WITH SPANISH SPEAKING CONSTITUENTS, AND CREATED A PARTNERSHIP TO EXPAND OUTREACH INTO THE HISPANIC/LATINO COMMUNITY.WE CONTINUED PROVIDING THE LATEST INFORMATION AND RESOURCES ON LUPUS AND COVID-19 VACCINES, WHICH HAVE BEEN VIEWED MORE THAN 625,000 TIMES. OUR COVID-19 GENERAL INFORMATION PAGE WAS VIEWED MORE THAN 500,000 TIMES IN 2021.THE FOUNDATION ALSO LAUNCHED A PARTNERSHIP DURING LUPUS AWARENESS MONTH WITH PATIENTPOINT TO DISTRIBUTE LUPUS EDUCATION AND SUPPORT RESOURCES TO NEARLY 7,000 PHYSICIANS AND RHEUMATOLOGISTS ACROSS THE UNITED STATES. WE CREATED MULTIPLE SOCIAL MEDIA CAMPAIGNS TO CALL ATTENTION TO HEALTH DISPARITIES AND RESOURCES THAT SERVE THE UNIQUE NEEDS OF DIFFERENT AUDIENCES IMPACTED BY LUPUS. OUR EFFORTS GENERATED NEARLY 300,000 SOCIAL MEDIA IMPRESSIONS DURING LUPUS AWARENESS MONTH AND RAISED FUNDS TO SUPPORT IMPORTANT LUPUS RESEARCH AND EDUCATION INITIATIVES.AS THE RECOGNIZED LEADER IN LUPUS, THE FOUNDATION SPEARHEADED THE ANNUAL GLOBAL OBSERVANCE OF WORLD LUPUS DAY (WLD) ON MAY 10. WE SUCCESSFULLY IMPLEMENTED A SOCIAL MEDIA CAMPAIGN, #MAKELUPUSVISIBLE, THAT GENERATED MEDIA COVERAGE WORLDWIDE. WE CREATED DOZENS OF SOCIAL MEDIA AWARENESS SHAREABLE MEMES AND TOOLS, TRANSLATED INTO NINE LANGUAGES, AND SHARED BY PARTICIPANTS FROM OVER 100 COUNTRIES.OUR MONTHLY PODCAST, THE EXPERT SERIES, CONTINUED TO GROW IN 2021 WITH NEARLY 14,000 DOWNLOADS SINCE IT LAUNCHED THE PREVIOUS YEAR.WE ENROLLED MORE THAN 2,000 PEOPLE IN TAKE CHARGE, OUR 12-WEEK EMAIL SERIES AIMED AT PROVIDING NEWLY DIAGNOSED PEOPLE WITH LUPUS WITH THE KNOWLEDGE. MORE THAN 102 GAMERS JOINED US FOR GAME ON! TO END LUPUS, OUR THREE-DAY LIVE STREAM EVENT WHERE STREAMERS FROM AROUND THE WORLD RAISED AWARENESS OF LUPUS AND FUNDS FOR LUPUS RESEARCH AND EDUCATION. 2651773 1503660 134355 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 RESEARCH LEADING TO SIGNIFICANT TREATMENT BREAKTHROUGHS.THROUGH OUR DIRECT FUNDING SUPPORT AND VARIOUS FOUNDATION INITIATIVES, WE INVESTED MORE THAN $1.5 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 $21 MILLION IN PUBLIC FUNDING FOR LUPUS RESEARCH AND EDUCATION PROGRAMS. THE FOUNDATION ALSO HELPED SECURE A $1.25 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. THIS PAST YEAR, THE FOUNDATION:WE RECRUITED MORE THAN 1,000 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. THE DATA HELP RESEARCHERS ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS AND IMPROVE DISEASE OUTCOMES.THE FOUNDATION CONTINUED FUNDING 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.WE CONTINUED OUR LEADERSHIP ROLE WITH THE ADDRESSING LUPUS PILLARS FOR HEALTH ADVANCEMENT (ALPHA) PROJECT, A GLOBAL INITIATIVE TO IDENTIFY AND PRIORITIZE TOP URGENT AND UNMET ISSUES IN LUPUS DRUG DEVELOPMENT, CLINICAL CARE, ACCESS, AND VALUE OF CARE. IN 2021, THE PROJECT ESTABLISHED TEAMS FOCUSING ON THREE PILLARS OF NEED: ACCESS TO CARE, DRUG DEVELOPMENT, AND CLINICAL CARE. THE TEAMS WILL ADDRESS CRITICAL ISSUES, INCLUDING STEROID-SPARING, HEALTH DISPARITIES, AND A BETTER UNDERSTANDING OF THE HETEROGENEITY OF LUPUS.THE FOUNDATION FUNDED STUDENT FELLOWSHIPS AND 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. THROUGH THIS PROGRAM, THE FOUNDATION ENSURES GRANTEES WILL RECEIVE NEEDED GUIDANCE AND ENCOURAGEMENT BY CONNECTING THEM WITH AN ESTABLISHED LUPUS CLINICAL SCIENTIST WHO SERVES AS THEIR MENTOR.THE FOUNDATION ALSO EXPANDED AND LAUNCHED NEW INTERNATIONAL PARTNERSHIPS WITH ORGANIZATIONS THAT PLAY A CENTRAL ROLE IN ADVANCING LUPUS SCIENCE. STRATEGIC PARTNERSHIPS DURING 2021 INCLUDED:- FUNDING THE NEXT THREE 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. - SUPPORTING THE CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) TO ADDRESS THE TOP ISSUES IN CHILDHOOD LUPUS AND LUPUS NEPHRITIS. - FUNDING FOR THE 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 TO MANAGE THEIR CATALYST GRANT, WHICH PROVIDES ONE-YEAR FUNDING TO CANADIAN RESEARCHERS AT ANY STAGE IN THEIR CAREERS.- COLLABORATING WITH THE COVID-19 GLOBAL RHEUMATOLOGY ALLIANCE REGISTRY, A SIGNIFICANT INTERNATIONAL EFFORT TO COLLECT INFORMATION FROM CLINICIANS AND PEOPLE WITH RHEUMATIC DISEASES, SUCH AS LUPUS. THROUGH OUR ADVOCACY EFFORTS IN 2021, WE SUPPORTED LUPUS RESEARCH BY:- HOSTING THE 2021 DIGITAL ADVOCACY SUMMIT, BRINGING TOGETHER NEARLY 4,000 LUPUS ADVOCATES. DURING THE TWO-DAY PROGRAM, ADVOCATES LEARNED ABOUT THE TOP ISSUES IN LUPUS RESEARCH AND CONDUCTED ONLINE MEETINGS WITH THEIR MEMBERS OF CONGRESS.- ADVOCATING TO SECURE $21.5 MILLION IN FUNDING FOR LUPUS-SPECIFIC RESEARCH AND EDUCATION PROGRAMS, THE MOST FUNDING CONGRESS HAS EVER APPROVED FOR LUPUS-SPECIFIC PROGRAMS IN A SINGLE YEAR, INCLUDING: A. AN ADDITIONAL $10.5 MILLION, A $1 MILLION INCREASE OVER FISCAL YEAR (FY) 2020, TO SUPPORT THE NATIONAL LUPUS PATIENT REGISTRY PROGRAM AT THE US CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC). THE US HOUSE OF REPRESENTATIVES APPROVED THE FUNDING IN JULY. WHEN FINALLY ENACTED INTO LAW, IT WILL BRING TOTAL SUPPORT FOR THE PROGRAM TO MORE THAN $92 MILLION. B. AN ADDITIONAL $10 MILLION FOR THE LUPUS RESEARCH PROGRAM AT THE DEPARTMENT OF DEFENSE, WHICH THE HOUSE APPROPRIATIONS COMMITTEE PASSED IN JULY. WHEN ENACTED INTO LAW, TOTAL SUPPORT FOR THE LUPUS RESEARCH PROGRAM WOULD REACH $45 MILLION. - ADVOCATING FOR AN ADDITIONAL $49 BILLION FOR THE NATIONAL INSTITUTES OF HEALTH IN FY2022, THE WORLD'S LARGEST PUBLIC FUNDER OF LUPUS RESEARCH, WHICH THE HOUSE OF REPRESENTATIVES APPROVED IN JULY.- ADDITIONAL FUNDING FOR THE OFFICE OF MINORITY HEALTH'S LUPUS PROGRAM.- 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 AS THEY MOVE FORWARD WITH THE REAUTHORIZATION OF THE PRESCRIPTION DRUG USER FEE ACT (PDUFA).- LEADING THE MARKET ACCESS WORKING GROUP, COMPRISING PEOPLE WITH LUPUS AND KEY OPINION LEADERS. MOST NOTABLY, THE WORKING GROUP ACHIEVED A FAVORABLE REVIEW FROM THE INSTITUTE FOR CLINICAL AND ECONOMIC REVIEW (ICER) FOR TWO NEWLY APPROVED LUPUS MEDICATIONS. HEALTH INSURERS AND STATE GOVERNMENTS USE THIS REPORT TO PROVIDE TIMELY ACCESS TO THE MEDICATIONS FOR PEOPLE WITH LUPUS IN THE US. - 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.- LEADING A NETWORK OF NEARLY 40,000 GRASSROOTS ADVOCATES FROM EVERY STATE AND 435 CONGRESSIONAL DISTRICTS WHO HELPED ADVANCE LUPUS PUBLIC POLICY PRIORITIES.- LAUNCHING THE LUPUS RESEARCH ACTION NETWORK (LRAN), A NEW PEER-TO-PEER INITIATIVE DEDICATED TO INCREASING KNOWLEDGE AND PARTICIPATION IN LUPUS RESEARCH. 2155782 24924 212016 NETWORK SUPPORT AND SERVICES: THE FOUNDATION'S NATIONAL NETWORK COMPRISES CHAPTERS, REGIONAL OFFICES, AMBASSADORS, AND SUPPORT GROUPS ACROSS THE UNITED STATES. NETWORK AFFILIATES CONDUCT PROGRAMS OF EDUCATION, RESEARCH, SUPPORT, AND ADVOCACY TO IMPROVE THE QUALITY OF LIFE AND LESSEN THE IMPACT OF LUPUS.THE FOUNDATION PROVIDES NETWORK AFFILIATES WITH CAPACITY-BUILDING SERVICES, ORGANIZATIONAL DEVELOPMENT, STRATEGIC SUPPORT, TRAINING, AND CONSULTATION. THE FOUNDATION ALSO PROVIDES OVERSIGHT AND RESOURCES TO MORE THAN 29 NATIONAL SUPPORT GROUPS AND 50 TRAINED SUPPORT GROUP FACILITATORS WHO SERVE CONSTITUENTS NATIONWIDE. WE HAVE MORE THAN 100 TRAINED AMBASSADORS WHO PROVIDE COMMUNITY-BASED PEER-TO-PEER EDUCATION AND SUPPORT. IN 2021, THE FOUNDATION EXPANDED ITS SUPPORT GROUPS TO SERVE KEY POPULATIONS IMPACTED BY LUPUS. THESE GROUPS INCLUDE MEN WITH LUPUS, A YOUTH SUPPORT GROUP FOR INDIVIDUALS AGES 7-25, AND A HISPANIC/LATINO SUPPORT GROUP THAT OFFERS HELP IN ENGLISH AND SPANISH. 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 OF THE WORLD LUPUS FEDERATION (WLF), A GLOBAL COALITION OF 250 LUPUS PATIENT ADVOCACY GROUPS FROM 75 COUNTRIES. THE FEDERATION'S MISSION IS TO ADVANCE AWARENESS AND ADVOCACY INITIATIVES THAT BRING GREATER ATTENTION AND RESOURCES TO THE FIGHT TO END LUPUS WORLDWIDE. IN 2021, THE WLF CONDUCTED A GLOBAL SURVEY TO UNDERSTAND THE BROAD IMPACT OF THE COVID-19 PANDEMIC ON PEOPLE WITH LUPUS AND EXPLORE THEIR VIEWS ON VACCINES. THE SURVEY REVEALED THE COVID-19 EXPERIENCES AMONG 6,100 PEOPLE WITH LUPUS FROM MORE THAN 85 COUNTRIES. AMONG THE MANY SIGNIFICANT FINDINGS WAS THE REVELATION THAT 50% OF RESPONDENTS HAD REPORTED DECREASED ACCESS TO AT LEAST ONE ASPECT OF LUPUS HEALTHCARE.THE FOUNDATION ALSO ENGAGED WITH VOLUNTEERS AND SUPPORTERS THROUGHOUT THE UNITED STATES. FOR THE HEALTH AND SAFETY OF PARTICIPANTS, DURING 2021, WE CONVERTED OUR LOCAL WALK TO END LUPUS NOW EVENTS INTO A SINGLE NATIONAL VIRTUAL EVENT. THIS FORMAT ENABLED GREATER PARTICIPATION BY PEOPLE FROM ALL 50 STATES, RAISING AWARENESS AND FUNDS VITAL TO IMPROVING THE QUALITY OF LIFE FOR ALL PEOPLE AFFECTED BY LUPUS.THE "VIRTUAL 6 CHALLENGE," 6 DAYS TO COMPLETE 6 MILES, REPLACED THE FOUNDATION'S IN-PERSON ENDURANCE PROGRAM, "TEAM MAKE YOUR MARK." PARTICIPATION INCREASED BY 75% OVER THE PRIOR YEAR. 480841 PATIENT EDUCATION AND SUPPORT: WE PROVIDED EDUCATION, SUPPORT, AND OTHER ASSISTANCE TO INDIVIDUALS WITH LUPUS, THEIR FAMILIES, AND CAREGIVERS.THROUGHOUT THE COVID-19 PANDEMIC, WE CONTINUED 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 TOOK NUMEROUS STEPS TO HELP PEOPLE AFFECTED BY LUPUS NAVIGATE THE PANDEMIC WHILE CONTINUOUSLY ADAPTING TO THEIR CURRENT NEEDS AND EVOLVING SITUATION.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 2021, 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 MORE THAN 4,000 PARTICIPANTS.WE CONTINUED TO GENERATE EDUCATIONAL CONTENT IN VARIOUS FORMATS, LANGUAGES, AND TOPICS IMPORTANT TO PEOPLE WITH LUPUS, INCLUDING TIMELY INFORMATION ABOUT COVID-19. IN 2021, WE CONTINUED TO UPDATE OUR CORONAVIRUS AND LUPUS LANDING PAGE, WHICH FEATURED THE LATEST NEWS AND RECOMMENDATIONS REGARDING THE DISEASE, SAFETY PRECAUTIONS, AND VACCINES.OUR NATIONAL HEALTH EDUCATION SPECIALISTS RESPONDED TO 3,000 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 ONLINE CENTER IS BEING UTILIZED MORE THAN EVER AS THE FIRST STOP FOR PEOPLE SEARCHING FOR BASIC INFORMATION ON LUPUS AND LOCAL RESOURCES. ADDITIONALLY, THE FOUNDATION REFORMATTED THE LUPUS INFORMATIONAL PACKET AS A DIGITAL DOCUMENT, WITH NEARLY 3,000 DOWNLOADS.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 SERIES ALSO HAS EXPERIENCED GLOBAL GROWTH SECURING MORE THAN 3,600 SUBSCRIBERS, WITH TOP LISTENERS IN THE UNITED STATES, AUSTRALIA, AND THE UNITED KINGDOM. 7173 22856 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 2021, WE CONTINUED TO FOCUS ON EXPANDING PARTNERSHIPS WITH ORGANIZATIONS THAT SERVE MEDICAL AND OTHER HEALTH CARE PROFESSIONALS. THESE ORGANIZATIONS INCLUDE THE RHEUMATOLOGY NURSES SOCIETY, THE AMERICAN ACADEMY OF FAMILY PHYSICIANS (AAFP) AND MEDSCAPE. IN PARTICULAR, THIS YEAR IN PARTNERSHIP WITH MEDSCAPE WE DEVELOPED A NEW A CONTINUING MEDICAL EDUCATION (CME) ACTIVITY "FACILITATING SHARED DECISION-MAKING IN PATIENTS WITH SLE." THE GOAL OF THIS ACTIVITY IS TO IMPROVE HEALTHCARE PROVIDER UNDERSTANDING OF HOW TO IMPLEMENT SHARED DECISION-MAKING IN MANAGEMENT OF PATIENTS WITH LUPUS, AND ITS IMPACT ON PATIENT OUTCOMES. A RECORD NUMBER OF MANUSCRIPTS WERE 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 2021, LS&M RECEIVED ITS FIRST IMPACT FACTOR RATING. IT HAS THE HIGHEST RANKING 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. 488014 22856 12487593 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 1 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 33 0 1 58 1 0 0 0 0 0 0 0 0 0 1 0 0 0 X 16 16 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 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 X 0 0 0 JANE HAWLEY DIRECTOR 1.00 X 0 0 0 BRIDGET JORDAN LEVY DIRECTOR - UNTIL 06/2021 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 STEPHEN RABINOWITZ DIRECTOR - UNTIL 06/2021 1.00 X 0 0 0 CHRISTINE SMITH DIRECTOR 1.00 X 0 0 0 MARJORIE S SUSMAN DIRECTOR - UNTIL 06/2021 1.00 X 0 0 0 AMY YALDEN DIRECTOR 1.00 X 0 0 0 STEVAN W GIBSON PRESIDENT & CEO 40.00 X 349382 0 24210 JEANINE SMITH VP, NETWORK DEVELOPMENT 40.00 X 195835 0 23884 JULIE TUNE CFO 40.00 1.00 X 179486 0 10688 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 40.00 X 221476 0 28155 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT 40.00 X 190126 0 17505 SANDRA C RAYMOND SENIOR ADVISOR 40.00 X 186354 0 11562 LEIGH ANN CARDENAS VP, INDIVIDUAL GIVING 40.00 X 159649 0 15355 SUSAN J GLOOR REGIONAL DIRECTOR, NE 40.00 X 154599 0 17385 MATT DEGOOYER SENIOR REGIONAL DIRECTOR, PNW 40.00 X 130717 0 15828 MICHAEL DONNELLY VICE PRESIDENT, COMMUNICATIONS 40.00 X 132691 0 12523 MATTHEW SCELZA REGIONAL DIRECTOR, CA 40.00 X 130386 0 13382 DESIREE WIENAND DIRECTOR, CORPORATE ENGAGEMENT 40.00 X 130166 0 13165 2160867 0 203642 19 0 1 0 AISLE 518 STRATEGIES 2108 MILITARY ROAD ARLINGTON VA 22207 ADVERTISEMENT 330689 PROMETHEUS RESEARCH LLC 1 AUDUBON ST NEW HEAVEN CT 06511 DATA MANAGEMENT 176103 FAEGRE DRINKER BIDDLE & REATH LLC 75 REMITTANCE DRIVE CHICAGO IL 60675 CONSULTING 145184 NVG LLC 1640 RHODE ISLAND AVE NW WASHINGTON DC 20036 CONSULTING 121442 4 109125 620000 2357582 9306764 88808 12393471 PROG. EVENTS/OTHER 900099 2371767 2371767 MEMBERSHIP DUES 900099 212016 212016 PUBLICATIONS/MERCHAND. 900099 8569 8569 2592352 3634 3634 32486 32486 REFUNDS 900099 1600 1600 1600 15023543 2592352 0 37720 1349584 1349584 31000 31000 148000 148000 1511028 1207442 222698 80888 4129130 3487133 377628 264369 192273 159345 20086 12842 400814 339133 36787 24894 381329 317902 40008 23419 8444 7778 403 263 60271 60271 64550 64550 1406841 1345688 28211 32942 2176080 2155021 3209 17850 240043 158803 74852 6388 764672 573822 146415 44435 627315 533412 56813 37090 13231 3818 7565 1848 99117 47711 1688 49718 553 466 53 34 16005 16005 220993 196238 14979 9776 72643 61238 6901 4504 POSTAGE & MAILHOUSE 537222 125100 111241 300881 PRINTING & PUBLICATIONS 227408 182561 8080 36767 MEMBERSHIP DUES 48622 40393 63 8166 14727168 12487593 1217951 1021624 X 1213953 667115 112359 434479 1961878 2069009 2963721 3015805 1349278 1441401 166879 229875 219650 510043 1990639 1258224 916207 732415 331754 385555 350260 454654 8259627 8838757 1151376 976092 1021218 1094672 0 406995 11078 0 975100 1008591 1475183 1376016 4633955 4862366 X 1680866 2094401 1944806 1881990 3625672 3976391 8259627 8838757 296375 54344 0 X 0 1 X 1 1 1 X 12484585 13324163 14173781 10961768 12393471 63337768 12484585 13324163 14173781 10961768 12393471 63337768 3901258 59436510 24753 50482 124871 48732 36120 284958 4000 4000 63626726 10843123 0.93410 0.93560 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - 2016 AMOUNT: $ 4,000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 69211 69211 14601452 14670663 883533 220883 0 0 926440 988962 833501 883533 3632436 5448654 49884 61406 47306 69211 227807 231610 247241 208375 220883 908109 1362164 404842 56936 3678 458100 379279 30200 4637 404842 377127 4745 2593 379279 359750 21234 3857 377127 338723 24657 2253 1377 359750 1.00000 1 0 1061513 413708 647805 464905 438019 26886 464221 406497 57724 732415 DEPOSITS 56713 OTHER RECEIVABLES 122909 DUE FROM LAC 275032 454654 CAPITAL LEASE OBLIGATIONS 5339 DEFERRED LEASE INCENTIVE 623643 DEFERRED RENT 747034 1376016 X 15251887 54344 174000 228344 15023543 0 15023543 14901168 174000 174000 14727168 0 14727168 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, 2021 AND 2020, 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. 1 NORTH AMERICA 0 0 GRANTMAKING 148000 0 0 0 0 0 0 148000 0 148000 NORTH AMERICA RESEARCH GRANT 140000 WIRE TRANSFER 1 0 FELLOWSHIP AWARD NORTH AMERICA 2 8000 WIRE TRANSFER 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 848812 64550 784262 848812 64550 784262 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 19 HAGOOD AVENUE SUITE 805 CHARLESTON SC 29425 576000722 501(C)(3) 756000 RESEARCH HOSPITAL FOR SPECIAL SURGERY 535 EAST 70TH STREET NEW YORK NY 10021 131624135 501(C)(3) 100000 RESEARCH CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH A 555 EAST WELLS STREET MILWAUKEE WI 53202 464152355 501(C)(3) 50000 RESEARCH JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD N4327-B BALTIMORE MD 21211 520595110 501(C)(3) 140000 RESEARCH YALE UNIVERSITY 2 WHITNEY AVENUE 6TH FLOOR NEW HAVEN CT 06510 060646973 501(C)(3) 140000 RESEARCH BOSTON CHILDRENS HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 140000 RESEARCH 6 0 FELLOWSHIP AWARDS 4 16000 RESEARCH AWARD 3 15000 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 319124 0 30000 0 258 0 14250 0 9960 0 373592 0 0 0 MARY T CRIMMINGS VP, MARKETING & COMMUNICATIONS 215338 0 6000 0 138 0 19913 0 8242 0 249631 0 0 0 JEANINE SMITH VP, NETWORK DEVELOPMENT 189577 0 6000 0 258 0 13924 0 9960 0 219719 0 0 0 PATRICK WILDMAN VP, ADVOCACY & GOVERNMENT 183988 0 6000 0 138 0 9690 0 7815 0 207631 0 0 0 SANDRA C RAYMOND SENIOR ADVISOR 186354 0 0 0 0 0 0 0 11562 0 197916 0 0 0 JULIE TUNE CFO 177228 0 2000 0 258 0 0 0 10688 0 190174 0 0 0 LEIGH ANN CARDENAS VP, INDIVIDUAL GIVING 155559 0 4000 0 90 0 7985 0 7370 0 175004 0 0 0 SUSAN J GLOOR REGIONAL DIRECTOR, NE 153091 0 1250 0 258 0 7425 0 9960 0 171984 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 61 36333 FAIR MARKET VALUE X 11 52475 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. 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