2022-10-14T12:52:52-05:00 2022-06-30 320530003 QUIGLEY & MIRON 3550 WILSHIRE BLVD 1660 LOS ANGELES CA 90010 990 2021-07-01 953890767 SPONDYLITIS ASSOCIATION OF AMERICA SPON 8188921616 16430 VENTURA BLVD 300 ENCINO CA 91436 CASSIE SHAFER CHIEF EXECUTIVE OFFICER 8188921616 2022-10-14 CASSIE SHAFER 999009999 ARMEN GRIGORIAN P01582463 2136393550 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z CASSIE SHAFER 16430 VENTURA BLVD 300 ENCINO CA 91436 5601641 0 X WWW.SPONDYLITIS.ORG X 1983 CA ADVANCING RESEARCH, ACCELERATED DIAGNOSIS, OPTIMUM TREATMENT, PUBLIC AWARENESS AND HEALTH CARE PROFESSIONAL EDUCATION IN SPONDYLOARTHRITIS 12 12 13 130 0 0 2996504 5505466 3551 4877 59232 60228 0 0 3059287 5570571 123292 451878 0 0 1250189 1367444 0 0 107683 656276 953987 2029757 2773309 1029530 2797262 4942936 7928906 225104 582891 4717832 7346015 X ADVANCING AND DIRECTLY SPONSORING SPONDYLOARTHRITIS RESEARCH, ACCELERATING DIAGNOSIS, SUPPORTING OPTIMUM TREATMENT FOR THE INDIVIDUAL, ADVANCING AWARENESS, AND PUBLIC AND HEALTH CARE PROFESSIONAL EDUCATION IN SPONDYLOARTHRITIS. 0 0 863774 451878 4877 PATIENT EDUCATIONAL SEMINARS, WEBINARS, AND HEALTH EDUCATION CONTENT, ALONG WITH PATIENT SUPPORT PROGRAMS ARE DELIVERED VIA VARIOUS DIGITAL OUTLETS. SAA'S INTERACTIVE WEBSITE, LOCATED AT SPONDYLITIS.ORG, CONTAINS THOUSANDS OF PAGES OF SPONDYLOARTHRITIS INFORMATION, AND SERVES SS MORE THAN 586,000 UNIQUE VISITORS EACH YEAR.PATIENT EDUCATIONAL SEMINARS WERE HELD VIRTUALLY UTILIZING A ROBUST AND INTERACTIVE VIRTUAL CONFERENCE PLATFORM. THE PLATFORM FEATURED AN ANIMATED AND INTERACTIVE LOBBY TO ACCESS DIFFERENT PARTS OF THE CONFERENCE HALL, INCLUDING THE EXHIBIT HALL, ACTIVITY LOUNGE, SPA RESOURCES HUB, AND PRESENTATION HALL - WHERE ATTENDEES ACCESSED THE SPEAKERS' LIVE PRESENTATIONS AND TOOK PART IN MODERATED Q&A SESSIONS. IN ADDITION, "FACEBOOK LIVE" BROADCASTS WERE ALSO CONDUCTED. THESE BROADCASTS ARE RECORDED AND AVAILABLE FOR FUTURE USE THROUGH THE SAA WEBSITE.PATIENT EDUCATION PUBLICATIONS INCLUDE A COLLECTION OF 12 RECENTLY UPDATED (AND PHYSICIAN VETTED) ENGLISH LANGUAGE SPONDYLOARTHRITIS EDUCATIONAL BROCHURES, AND 10 NEW SPANISH LANGUAGE BROCHURES. AMONG THEM ARE OUR NEWEST ENGLISH LANGUAGE BROCHURES, "TALKING TO YOUR DOCTOR ABOUT SPONDYLOARTHRITIS," DEVELOPED IN MARCH OF 2022, AND "WHAT IS NR-AXSPA," DEVELOPED IN JANUARY OF 2021. ADDITIONALLY, THE EXISTING "WHAT IS ANKYLOSING SPONDYLITIS" BROCHURE WAS REWRITTEN AND REDESIGNED IN DECEMBER OF 2021. ALL 10 SPANISH LANGUAGE BROCHURES WERE ALSO COMPLETED IN 2021.SPONDYLITIS PLUS MAGAZINE-SAA MEMBERS RECEIVE QUARTERLY ISSUES OF THE ORGANIZATION'S PREMIERE PRINT PUBLICATION. SPONDYLITIS PLUS PROVIDES IN-DEPTH COVERAGE OF ISSUES SUCH AS PAIN, FATIGUE, AND OTHER COMPLICATIONS, DISCUSSES THE LATEST RESEARCH AND TREATMENT INFORMATION - OFTEN PRESENTED BY PROMINENT RHEUMATOLOGISTS AND RESEARCHERS, FEATURES MOVING AND UNIQUE PERSONAL STORIES FROM OTHERS WITH SPONDYLOARTHRITIS, AND MUCH MORE. OVER 4,500 COPIES ARE DISTRIBUTED QUARTERLY.STRAIGHT TALK ON SPONDYLOARTHRITIS PUBLICATION-THIS LEGACY PUBLICATION IS CURRENTLY BEING FULLY RE-WRITTEN AND REDESIGNED. THE FINISHED PRODUCT WILL HAVE 12 NEW CHAPTERS, WRITTEN BY VARIOUS CONTENT EXPERTS, AND RECEIVE A FULL REDESIGN. ESUN-ALMOST 36,000 PEOPLE SUBSCRIBE TO AND RECEIVE SAA'S ESUN EACH MONTH. ESUN, THE ELECTRONIC SPONDYLOARTHRITIS UPDATE NEWSLETTER, CONTAINS A VARIETY OF SPONDYLOARTHRITIS-RELATED CONTENT, SUCH AS NEWS, RESEARCH OPPORTUNITIES, UPCOMING SAA PROGRAMS AND OPPORTUNITIES, STORIES FROM THOSE LIVING WITH SPONDYLOARTHRITIS, AND MORE.COVID19 RESOURCE HUB AND RESEARCH SURVEY-WE CONTINUE TO SUBMIT SURVEY FINDINGS IN PEER REVIEWED SETTINGS. NUMEROUS ABSTRACTS HAVE BEEN SUBMITTED, AND THREE HAVE BEEN THUS FAR PUBLISHED. SAA'S COVID19 HUB CONTINUES TO BE UPDATED WITH THE LATEST INFORMATION ON THE INTERSECTION OF COVID19 AND SPONDYLOARTHRITIS, AS WELL AS INITIAL VACCINES AND BOOSTER VACCINES.SAA'S SUPPORT GROUPS-SAA'S SUPPORT GROUPS CONTINUE TO BE ACTIVE ACROSS THE US. 39 ACTIVE GROUPS, IN 25 STATES AND ONE GROUP IN INDIA, WITH 48 SUPPORT GROUP LEADERS. ONLINE SUPPORT GROUPS MADE AVAILABLE DURING COVID-19 FOR ALL PARTICIPANTS AS NEEDED. MORE THAN 236 MEETINGS HELD THROUGH JUNE 2022."LIFE AFTER DIAGNOSIS" VIDEO SERIES-A PATIENT FOCUSED EDUCATIONAL PROGRAM ADDRESSING THE UNMET NEED OF A SYSTEMATIC PATH TO UNDERSTANDING THE DIAGNOSIS, TREATMENTS, AND MANAGEMENT OF ANKYLOSING SPONDYLITIS (AS). THE PROJECT IS COMPRISED OF A SERIES OF SEVEN VIDEOS, EACH DELIVERED THROUGH AN EMAIL CONTAINING ADDITIONAL RESOURCES RELATED TO THE TOPIC AT HAND. THE CONTENT WAS DEVELOPED IN CLOSE COLLABORATION WITH LEADING HEALTH PROFESSIONALS AS WELL AS PATIENTS LIVING WITH AS.NEW ANIMATED VIDEO: WHAT IS NR-AXSPA?-SAA WORKED WITH A DIGITAL MEDIA PRODUCTION COMPANY TO SCRIPT AND DEVELOP OUR NEWEST ANIMATED EDUCATIONAL VIDEO, "WHAT IS NR-AXSPA?" THIS PIECE DISCUSSES COMMON SIGNS AND SYMPTOMS OF NR-AXSPA AND SHARES HELPFUL INFORMATION AND RESOURCES FOR THOSE IMPACTED (WHETHER DIAGNOSED OR NOT.)IMAS (INTERNATIONAL MAPPING ANKYLOSING SPONDYLITIS)-IT IS A PATIENT CONCEIVED STUDY TO UNDERSTAND THE RAMIFICATIONS OF AS. SPECIFICALLY THE STUDY DESCRIBES DEMOGRAPHICS, CLINICAL CHARACTERISTICS, JOURNEY TO AXSPA DIAGNOSIS, AND ASPECTS OF DISEASE BURDEN. SIMILAR TO SAA'S LIFE IMPACT STUDIES, IT HAS PRESENTED RESULTS FROM SEVERAL COUNTRIES IN EUROPE. SAA LAUNCHED THE USA COMPONENT OF THIS STUDY IN LATE SPRING AND HAS ADDED THE US DATA TO THE GLOBAL UNDERSTANDINGGLOBAL SPONDYLOARTHRITIS SUMMIT 2022-SAA'S SIGNATURE ONLINE EDUCATIONAL PROGRAM, 4TH ANNUAL GLOBAL SPONDYLOARTHRITIS SUMMIT, TOOK PLACE MAY 6-7. THIS YEAR'S ENHANCED VIRTUAL ENVIRONMENT PROVIDED A MORE INTERACTIVE EXPERIENCE FOR ATTENDEES. THE PROGRAM FEATURED 12 RHEUMATOLOGISTS AND MEDICAL PROFESSIONALS DISCUSSING KEY TOPICS TO THOSE IN THE INTERNATIONAL SPONDYLITIS COMMUNITY. SEVERAL OF THIS YEAR'S EXPERTS PARTICIPATED IN LIVE CHATS OR MODERATED ONLINE Q&A WITH ATTENDEES. THIS YEAR'S SUMMIT ALSO FEATURED DAILY TRIVIA QUIZZES, A LEADERBOARD CHALLENGE, A LIVE MAGIC SHOW, AN ACTIVITY LOUNGE AND AN EXHIBIT HALL. SAA ALSO PROVIDED FOREIGN LANGUAGE SUBTITLES FOR THE PRESENTATIONS. SUBTITLES WERE AVAILABLE IN SEVEN LANGUAGES: ARABIC, BULGARIAN, FRENCH, GERMAN, GREEK, RUSSIAN, AND SPANISH. MORE THAN 3,000 ATTENDEES FROM 87 COUNTRIES REGISTERED FOR THIS YEAR'S EVENT. 496078 RESEARCH EARLY CAREER INVESTIGATOR AWARDS (ECI)-TWO ECI AWARDS WERE PRESENTED IN FY21-22 TOTALING $40,000, AND WERE AWARDED TO DR. RUTH NAPIER, ASSISTANT PROFESSOR AT OREGON HEALTH AND SCIENCE UNIVERSITY (OHSU), PORTLAND OR AND DR. MARK HWANG, ASSISTANT PROFESSOR OF MEDICINE AT UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER, HOUSTON, TX. DR. NAPIER'S RESEARCH IS FOCUSED ON UNDERSTANDING THE IMMUNOLOGICAL (CELLULAR) MECHANISMS THAT TRIGGER AUTOIMMUNE AND AUTOINFLAMMATORY DISEASES IN GENETICALLY-SUSCEPTIBLE INDIVIDUALS. IN PARTICULAR SHE IS INTERESTED IN HOW MICROBIAL-SIGNALING MOLECULES LIKE CASPASE RECRUITMENT DOMAIN-CONTAINING PROTEIN 9 (CARD9) CONTROL DISEASE IN ANKYLOSING SPONDYLITIS (AS)DR. HWANG'S RESEARCH SEEKS TO HELP AS PATIENTS BY PREDICTING THEIR RISK OF LONG-TERM SPINAL DAMAGE, INFORMING THEM A PRIORI, AND ALLOWING TIMELY INITIATION OF POTENTIAL DISEASE-MODIFYING TREATMENT BEFORE IRREVERSIBLE SPINAL DAMAGE HAS OCCURRED. THE OVERALL OBJECTIVES IN THE UTHSC-H SPONDYLOARTHRITIS PROGRAM ARE TO (I) DEVELOP ALGORITHMS THAT WILL IDENTIFY AS RADIOGRAPHIC SPINAL DAMAGE PATTERNS THROUGH MOLECULAR DATA AND (II) CHARACTERIZE THE INTEGRAL BIOLOGIC PATHWAYS RESPONSIBLE FOR SPINAL DAMAGE.IN ADDITION TO FUNDING ECI AWARDS THE ORGANIZATION RECEIVES FUNDING REQUESTS FROM OUTSIDE SOURCES TO SUPPORT RESEARCH RELATED TO SPONDYLOARTHRITIS. BECAUSE THE ORGANIZATION HAS LIMITED RESOURCES FOR RESEARCH FUNDING, IT IS IMPERATIVE THAT ANY RESEARCH PROPOSALS MAKE OPTIMAL USE OF THESE LIMITED RESOURCES. THREE FUNDING REQUESTS WERE APPROVED IN 2022. THESE GRANTS WENT TO THE FOLLOWING: - MICHAEL WEISMAN, MD - GROUNDBREAKING RESEARCH SOUGHT TO GAIN A BETTER UNDERSTANDING OF THE RATES AND PREDICTORS OF SPA AND ITS ASSOCIATED FUNCTIONAL OUTCOMES IN MILITARY POPULATIONS. - KRISTI KUHN, MD - RESEARCH COMBINED TRANSLATIONAL OBSERVATIONS FROM A STUDY POPULATION OF PEOPLE WITH AS WITH MECHANISTIC WET-BENCH STUDIES AIMING TO ADDRESS THE IMMUNOLOGIC CONSEQUENCES OF MICROBIOME CHANGES IN PATIENTS WITH SPA. THE STUDY PROVIDES AN IMPORTANT FOUNDATION TO ADDRESS WHY THE MICROBIOME IS IMPORTANT IN THE DEVELOPMENT OF SPA.- TEJPAL GILL, MD - RESEARCH SOUGHT TO UNDERSTAND THE MECHANISM UNDERLYING DISEASE SUSCEPTIBILITY. SPECIFICALLY, TO DETERMINE THE METABOLIC PROFILE IN AXIAL SPONDYLOARTHRITIS (AXSPA) PATIENTS IN COMPARISON WITH HLA-B27 POSITIVE AND HLA-B27 NEGATIVE HEALTHY CONTROLS AS A TOOL TO DETERMINE THE CONTRIBUTION OF HLA-B27 AND DISEASE ON THE FECAL AND PLASMA METABOLOME.SAA ALSO RECEIVED A BEQUEST IN 2022 RESTRICTED TO RESEARCH. THIS MONEY WILL BE USED TO PLAN AND CONDUCT OUR 3RD UNMET NEEDS RESEARCH CONFERENCE IN SEPT 2023 FOLLOWED BY A REQUEST FOR PROPOSALS IN THE UNMET NEEDS RESEARCH AREAS IDENTIFIED THROUGH THE CONFERENCE. 374225 HEALTH CARE PROVIDER EDUCATION AND OUTREACHPRIMARY CARE, AND CHIROPRACTOR ACCREDITED ONLINE EDUCATION: FOCUSING ON SHORTENING THE SPA DIAGNOSTIC DELAY-THE PRIMARY CARE AND CHIROPRACTIC FACING EDUCATIONAL MODULES WERE FINALIZED, ACCREDITED, AND LAUNCHED IN DEC 2021.THE PRIMARY CARE MODULE IS TITLED, "DEMYSTIFYING AXIAL SPONDYLOARTHRITIS IN PRIMARY CARE: RECOGNITION, DIAGNOSIS, AND WHAT COMES NEXT." THE PURPOSE OF THIS MODULE IS TO INCREASE THE AWARENESS OF AXSPA AMONG PRIMARY CARE PROVIDERS, GIVING THEM THE TOOLS TO APPROPRIATELY SUSPECT, DIAGNOSE, AND REFER AXSPA PATIENTS TO RHEUMATOLOGY TO ENSURE TIMELY DIAGNOSIS AND TREATMENT, AND IMPROVE PATIENT OUTCOMES.THE MODULE IS ACCREDITED FOR AMA/PRA CATEGORY 1 CREDITS THROUGH SAA'S PARTNERSHIP WITH EXCEL CME (WWW.EXCELCME.COM). ADDITIONALLY, ACTIVITIES ACCREDITED BY ACCME PROVIDERS ARE ACCEPTED AND RECOGNIZED FOR CREDIT BY THE AAPA (PHYSICIAN ASSISTANTS) AND THE AANP (NURSE PRACTITIONERS), ALLOWING US TO OFFER THIS LEARNING OPPORTUNITY TO A WIDE GROUP OF PRIMARY CARE PROVIDERS.THE CHIROPRACTIC MODULE IS TITLED, "SPOTTING AXIAL SPONDYLOARTHRITIS IN CHIROPRACTIC SETTINGS: IS AXSPA BEHIND YOUR PATIENT'S BACK PAIN? THE PURPOSE OF THIS MODULE IS TO INCREASE THE AWARENESS OF AXSPA AMONG CHIROPRACTORS, GIVING THEM THE TOOLS TO APPROPRIATELY SUSPECT, DIAGNOSE, AND REFER AXSPA PATIENTS TO RHEUMATOLOGISTS TO ENSURE TIMELY TREATMENT AND IMPROVE PATIENT OUTCOMES.THIS MODULE HAS BEEN ACCREDITED THROUGH PACE (PROVIDERS OF APPROVED CONTINUING EDUCATION) THROUGH A PARTNERSHIP WITH THE NATIONAL UNIVERSITY OF HEALTH SCIENCES ACCREDITATION BOARD AND PROVIDES ONE CE CREDIT. ACCREDITED ONLINE EDUCATION FOR FIRST RESPONDERS SAA'S COURSE FOR FIRST RESPONDERS, "EMS PITFALLS: ANKYLOSING SPONDYLITIS" WILL BE REACCREDITED IN DECEMBER 2022 AND CONTINUE TO PROVIDE 1 CE CREDIT FOR FIRST RESPONDERS AND NURSES. STANDARD EMS TREATMENT PROTOCOLS CAN CAUSE INJURY, DISABILITY, AND EVEN DEATH IN PATIENTS WITH ANKYLOSING SPONDYLITIS (AS). THIS COURSE PROVIDES TOOLS TO RECOGNIZE AS, AND SAFELY AND PROPERLY MANAGE IT IN EMERGENCY SITUATIONS.ADDITIONAL HCP EDUCATIONAL MODULES ARE IN DEVELOPMENT AND INCLUDE: ANESTHESIOLOGY AND AIRWAY MANAGEMENT MODULE-THE ANESTHESIOLOGY AND AIRWAY MANAGEMENT MODULE IS A NEW MODULE ADDED DURING THE LAST QUARTER OF FY2021. WE ARE IN THE EARLY PLANNING STAGES FOR THE DEVELOPMENT AND ACCREDITATION OF THIS 1-HOUR, ONLINE ACCREDITED ACTIVITY FOCUSING ON AXSPA AND AIRWAY MANAGEMENT. THE MODULE IS EXPECTED TO BE COMPLETED AND ACCREDITED DURING FY22-23.CASE-BASED MRI EDUCATIONAL TOOL FOR AXIAL SPONDYLOARTHRITIS-WE ARE SUPPORTING THE ENHANCEMENT BY CARE ARTHRITIS OF A NEWLY DEVELOPED MOBILE APP WHICH WILL HOST AND DELIVER MRI CASE STUDIES GEARED TO RHEUMATOLOGISTS AND RADIOLOGISTS. THE APP CURRENTLY HOSTS CONTENT FROM RHEUMNOW AND IS BEING EXPANDED WITH AN EDUCATIONAL MRI CASE STUDY FEATURE. THE PROGRAM AIMS TO ADDRESS A TOP-RANKED UNMET EDUCATIONAL NEED IN THE FIELD OF SPONDYLOARTHRITIS, NAMELY, THE APPROPRIATE INTERPRETATION OF MRI BY RHEUMATOLOGISTS AND RADIOLOGISTS FOR EARLY DIAGNOSIS OF SPA. THE APP STREAMING CONTENT WILL BE CASE-BASED AND INCLUDE BOTH CLINICAL AND IMAGING COMPONENTS. THE LAUNCH DATE OF THIS PROGRAM WILL BE DETERMINED BY ACCREDITATION AND DISTRIBUTION TIMELINES AND NEEDS. GOAL IS DURING FY 22-23.RHEUM TO DIAGNOSE-PHASE THREE OF A THREE-YEAR GRANT. THE GOAL OF "RHEUM TO DIAGNOSE" IS TO ADDRESS REAL WORLD BARRIERS TO AN ACCURATE AND EXPEDIENT DIAGNOSIS OF NR-AXSPA IN THE RHEUMATOLOGY SETTING. THE PHYSICIAN-FACING CONTENT OF RHEUM TO DIAGNOSE INCLUDES A TOTAL OF SIX PRESENTATIONS FEATURING EXPERTS IN SPONDYLOARTHRITIS, GEARED TO TWO DISTINCT AUDIENCES: RHEUMATOLOGY FELLOWS, AND MEDICAL STUDENTS. ALL SIX PRESENTATIONS (THREE FOR RHEUMATOLOGY FELLOWS, AND THREE FOR MEDICAL STUDENTS) ALONG WITH A PROMOTIONAL TRAILER, HAVE NOW BEEN PROFESSIONALLY RECORDED. SAA HAS CONTRACTED WITH A LEADING MARKETING FIRM SPECIALIZING IN HEALTHCARE AND HCP OUTREACH AND WILL BE GUIDING THE PROMOTION AND DISTRIBUTION OF THESE, AND OTHER AXSPA EDUCATIONAL CONTENT CREATED AS PART OF THIS GRANT.DELAY TO DIAGNOSIS-SAA CONTINUES TO COLLABORATE WITH ASIF (AXIAL SPONDYLOARTHRITIS INTERNATIONAL FEDERATION) INITIATIVE TO UNDERSTAND THE DELAY TO DIAGNOSIS ON A GLOBAL LEVEL. INFORMATION GLEANED FROM "HACKATHON" PROGRAMS WILL BE SHARED WITH SPA COMMUNITY THROUGH THE SUMMER 2021 LAUNCH OF A GLOBAL INITIATIVE THAT INCLUDES INFORMATION ON THE WEBSITE AND SHARED WITH NUMEROUS MEMBER ORGANIZATIONS. 556588 SAA'S SUPPORT GROUPS-SAA'S SUPPORT GROUPS CONTINUE TO BE ACTIVE ACROSS THE US. 39 ACTIVE GROUPS, IN 25 STATES AND ONE GROUP IN INDIA, WITH 48 SUPPORT GROUP LEADERS. ONLINE SUPPORT GROUPS MADE AVAILABLE DURING COVID-19 FOR ALL PARTICIPANTS AS NEEDED. MORE THAN 236 MEETINGS HELD THROUGH JUNE 2022.RHEUM TO DIAGNOSE-PHASE THREE OF A THREE-YEAR GRANT. THE GOAL OF "RHEUM TO DIAGNOSE" IS TO ADDRESS REAL WORLD BARRIERS TO AN ACCURATE AND EXPEDIENT DIAGNOSIS OF NR-AXSPA IN THE RHEUMATOLOGY SETTING. THE PHYSICIAN-FACING CONTENT OF RHEUM TO DIAGNOSE INCLUDES A TOTAL OF SIX PRESENTATIONS FEATURING EXPERTS IN SPONDYLOARTHRITIS, GEARED TO TWO DISTINCT AUDIENCES: RHEUMATOLOGY FELLOWS, AND MEDICAL STUDENTS. SOCIAL MEDIA - FACEBOOK AND TWITTER REMAIN A PRIMARY SOURCE OF EDUCATION AND AWARENESS WITH SAA'S CONSTITUENTS. DURING THE FISCAL YEAR ENDING JUNE 30, 2022, FACEBOOK EARNED 769,370 IMPRESSIONS AND 47,056 ENGAGEMENTS AND TWITTER EARNED 828,741 IMPRESSIONS AND 12,491 ENGAGEMENTS. THE SAA'S COMMUNITY FORUMS ALSO CONTINUE TO BE ACTIVE NOT ONLY FOR THE NEWLY DIAGNOSED BUT THOSE LIVING WITH THE DISEASE FROM A FEW YEARS TO ALMOST A LIFETIME. IN ADDITION, OUR INSTAGRAM COMMUNITY CONTINUES TO GROW AND CONTRIBUTED 180,022 IMPRESSIONS AND 7,660 ENGAGEMENTS DURING THE SAME PERIOD.SPONDYLOARTHRITIS (SPA) AWARENESS MONTH-SPONDYLOARTHRITIS (SPA) AWARENESS MONTH WAS CELEBRATED MAY 2022. ACTIVITIES INCLUDED RAISING AWARENESS DURING MAY AND THROUGHOUT THE YEAR HELPS INCREASE VISIBILITY OF SPONDYLOARTHRITIS. THROUGH THESE EFFORTS, WE ALSO EMPHASIZE THE NEED FOR RECOGNIZING THE SYMPTOMS FOR PROPER AND TIMELY DIAGNOSIS, FUNDING RESEARCH FOR A CURE, AND SUPPORT PROGRAMS THAT EDUCATE AND EMPOWER THOSE IMPACTED BY SPA TO MAKE MORE INFORMED DECISIONS ABOUT THEIR HEALTH. OUR THEME FOR 2022 FOCUSED ON EMOTIONAL WELLNESS, BASED ON THE TOPIC OUR PARTNERS AT ASIF PINNED FOR WORLD AS DAY. 556588 2290665 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 16 0 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA X X X CASSIE SHAFER 8188921616 16430 VENTURA BLVD SUITE 300 ENCINO CA 91436 ELLEN CARROLL SECRETARY 2.00 X X 0 0 0 CRAIG GIMBEL DIRECTOR 1.00 X 0 0 0 ERIC GOLDSTEIN TREASURER 2.00 X X 0 0 0 PAMELA WEISS DIRECTOR 1.00 X 0 0 0 ARNOLD M PODOLSKY DIRECTOR 1.00 X 0 0 0 MARY ANN POLADIAN DIRECTOR 1.00 X 0 0 0 JILL MILLER DIRECTOR 1.00 X 0 0 0 MICHAEL PIANIN BOARD CHAIR 2.00 X X 0 0 0 BATYA BILMES LEMLER DIRECTOR 1.00 X 0 0 0 JOHN D REVEILLE DIRECTOR 1.00 X 0 0 0 JAMES ROSENBAUM DIRECTOR 1.00 X 0 0 0 PAULA OLSIEWSKI VICE CHAIR 2.00 X X 0 0 0 CASSIE SHAFER CHIEF EXECUTIVE OFFICER 40.00 X 226968 0 6207 DIANN PETERSON CHIEF PHILANTHROPY OFFICER 40.00 X 115323 0 15868 RICHARD HOWARD CHIEF MISSION ADVANCEMENT 40.00 X 108031 0 14046 450322 0 36121 3 0 1 0 0 5505466 2000 5505466 PUBLICATION SALES 611710 4877 4877 4877 51298 51298 40000 31070 8930 8930 8930 5570571 4877 0 60228 X 436878 436878 15000 15000 247357 197885 24736 24736 921031 700040 166020 54971 21918 17668 2802 1448 92539 71136 15577 5826 84599 63063 15210 6326 3469 3469 71964 71964 357196 357196 281558 213942 58733 8883 27787 22087 3500 2200 48585 36085 10550 1950 6137 6137 136633 136590 43 20658 16958 2400 1300 2773309 2290665 374961 107683 424746 235048 4017438 7300421 32000 3174 69922 18092 37425 16653 14629 20772 355162 279503 54247 39452 3618 3618 4942936 7928906 225104 582891 225104 582891 X 3654020 4296789 1063812 3049226 4717832 7346015 4942936 7928906 2797262 -169079 0 X X 0 1 X 1 0 X 1652738 1941665 2181281 2996504 5505466 14277654 1652738 1941665 2181281 2996504 5505466 14277654 6979958 7297696 35065 68076 65844 61787 51298 282070 14559724 29967 0.50120 0.55520 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 26332 11559 14773 11093 5094 5999 20772 X 5401492 -169079 -169079 5570571 0 5570571 2773309 0 2773309 0 2773309 PART X, LINE 2: ACCOUNTING STANDARDS REQUIRE AN ORGANIZATION TO EVALUATE ITS TAX POSITIONS AND PROVIDE FOR A LIABILITY FOR ANY POSITIONS THAT WOULD NOT BE CONSIDERED 'MORE LIKELY THAN NOT' TO BE UPHELD UNDER A TAX AUTHORITY EXAMINATION. MANAGEMENT HAS EVALUATED ITS TAX POSITIONS AND HAS CONCLUDED THAT A PROVISION FOR A TAX LIABILITY IS NOT NECESSARY AT JUNE 30, 2022. GENERALLY, THE ORGANIZATION'S INFORMATION RETURNS REMAIN OPEN FOR EXAMINATION FOR A PERIOD OF THREE (FEDERAL) OR FOUR (STATE OF CALIFORNIA) YEARS FROM THE DATE OF FILING. 1 OREGON HEALTH & SCIENCE UNIVERS FOUNDATION 1121 SW SALMON STREET 100 PORTLAND OR 97205 237083114 501(C)(3) 121878 0 ROLE OF HLA-B27 METABOLIC PROFILING, EARLY INVESTIGATOR AWARD UNIVERSITY OF TEXAS 6431 FANNIN STREET MSB 5270 HOUSTON TX 77030 741761309 501(C)(3) 20000 0 EARLY INVESTIGATOR AWARD UNIVERSITY OF COLORADO SCHOOL OF MEDICINE 1775 AURORA CT MAIL STOP B115 AURORA CO 80045 846000555 501(C)(3) 150000 0 GENE REGULATIONS OF GUT-TRAFFICKING T CELLS UNIVERSITY OF CHICAGO 6054 S DREXEL AVE 300 CHICAGO IL 60637 362177139 501(C)(3) 25000 0 SPONDYLITIS IN INFLAMMATORY BOWEL DISEASE NYU SCHOOL OF MEDICINE PO BOX 415026 BOSTON MA 002415026 135562308 501(C)(3) 35000 0 SPONDYLITIS IN INFLAMMATORY BOWEL DISEASE MAYO CLINIC RESEARCH PO BOX 860334 ST PAUL MN 554860334 416011702 501(C)(3) 25000 0 SPONDYLITIS IN INFLAMMATORY BOWEL DISEASE ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI ONE GUSTAVE L LEVY PLACE BOX 1075 NEW YORK NY 10029 136171197 501(C)(3) 25000 0 SPONDYLITIS IN INFLAMMATORY BOWEL DISEASE BRIGHAM & WOMEN'S HOSPITAL 399 REVOLUTION DRIVE SOMERVILLE MA 02145 042312909 501(C)(3) 35000 0 SPONDYLITIS IN INFLAMMATORY BOWEL DISEASE 8 CASH GRANT 1 15000 PART I, LINE 2: RESEARCHERS ARE REQUIRED TO PROVIDE THE ORGANIZATION WITH PROGRESS REPORTS BASED ON A VARIETY OF MILESTONES INDIVIDUAL TO EACH STUDY, AND TO ENSURE THAT ANY PUBLICATION IN PEER REVIEW ACKNOWLEDGES THE ORGANIZATION'S FUNDING SUPPORT TOWARD THE EFFORT. X 0 0 0 0 0 0 0 0 0 CASSIE SHAFER CHIEF EXECUTIVE OFFICER 226968 0 0 0 0 0 6207 0 0 0 233175 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE AUDIT COMMITTEE REVIEWS THE DOCUMENT PRIOR TO ITS DISTRIBUTION TO THE ENTIRE BOARD FOR REVIEW. FORM 990, PART VI, SECTION B, LINE 12C ALL DIRECTORS AND SENIOR EMPLOYEES ARE REQUIRED TO COMPLETE AND SIGN A DISCLOSURE FORM LISTING ANY POTENTIAL CONFLICTS OF INTEREST BY SEPTEMBER 30, ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 THE ORGANIZATION UTILIZES CURRENT COMPENSATION DATA PUBLISHED BY THE NATIONAL HEALTH COUNCIL AND THE AMERICAN SOCIETY OF ASSOCIATION EXECUTIVES, AND OTHER FACTORS IN ORDER TO DETERMINE COMPENSATION. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION PRODUCES AN ANNUAL REPORT THAT IS PUBLISHED ON ITS WEBSITE FORM 990, PART IX, LINE 11G PROFESSIONAL SERVICES: PROGRAM SERVICE EXPENSES 357,196. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 357,196. FORM 990, PART XII, LINE 2C THE ORGANIZATION'S AUDIT COMMITTEE HAS RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF THE INDEPENDENT AUDITOR, SUBJECT TO THE APPROVAL OF THE BOARD OF DIRECTORS. THIS RESPONSIBILITY IS UNCHANGED FROM THE PRIOR YEAR.