2023-10-17T22:49:30-05:00 2023-06-30 320530003 QUIGLEY & MIRON 3550 WILSHIRE BLVD 1660 LOS ANGELES CA 90010 990 2022-07-01 953890767 SPONDYLITIS ASSOCIATION OF AMERICA SPON 8188921616 16430 VENTURA BLVD 300 ENCINO CA 91436 CASSIE SHAFER CHIEF EXECUTIVE OFFICER 8188921616 2023-10-17 CASSIE SHAFER 999009999 0 ARMEN GRIGORIAN P01582463 2136393550 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z CASSIE SHAFER 16430 VENTURA BLVD 300 ENCINO CA 91436 2348536 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 15 165 0 0 5505466 2200809 4877 5120 60228 142607 0 0 5570571 2348536 451878 30000 0 0 1367444 1504909 0 0 87986 953987 739029 2773309 2273938 2797262 74598 7928906 7830002 582891 413366 7346015 7416636 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 889884 5120 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 MORE THAN 500,000 UNIQUE VISITORS AND 1.4 MILLION PAGE VIEWS 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. THESE BROADCASTS ARE RECORDED AND AVAILABLE FOR FUTURE USE THROUGH THE SAA WEBSITE.PATIENT EDUCATION PUBLICATIONS INCLUDE A COLLECTION OF 14 UPDATED (AND PHYSICIAN VETTED) ENGLISH LANGUAGE SPONDYLOARTHRITIS EDUCATIONAL BROCHURES, AND 10 SPANISH LANGUAGE BROCHURES. 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. SPONDYCAST-LAUNCHED IN MARCH 2023, SAA'S NEW PODCAST SERIES IS SPECIFICALLY FOR PEOPLE WITH SPONDYLOARTHRITIS. EACH NEW EPISODE, RELEASED WEEKLY, FEATURES INTERVIEWS WITH EXPERTS IN VARIOUS FIELDS INCLUDING MEDICINE, PSYCHOLOGY, NUTRITION, AND FITNESS. SPONDYCAST WEEKLY HOST IS SAA BOARD MEMBER, JILL MILLER.STORYTELLING-THE INITIAL YEAR-LONG LAUNCH OF SAA STORYTELLERS, YOUR STORIES ON STAGE ENDED ON A HIGH NOTE IN SPRING OF 2023. SAA STORYTELLERS, YOUR STORIES ON STAGE IS A VIRTUAL COMMUNITY STORYTELLING SHOW WHERE FIVE MEMBERS OF THE SPA COMMUNITY SHARE PERSONAL STORIES ABOUT SPONDYLOARTHRITIS DURING AN HOUR-LONG PRESENTATION THAT INSPIRES, ENTERTAINS, AND CONNECTS YOU TO LIKEMINDED PEERS. SAA ENGAGED WITH 30 PATIENT STORYTELLERS DURING 6 DIFFERENT LIVE YOUTUBE BROADCASTS FROM SPRING 2022 TO SPRING 2023. THE PATIENT STORYTELLERS WERE BASED IN THE US AS WELL AS FROM AROUND THE WORLD, WITH STORIES COMING FROM AS FAR AWAY AS KUWAIT, CROATIA, AND NEW ZEALAND. ESUN-MORE THAN 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.COVID-19 RESOURCE HUB-SAA'S COVID-19 HUB CONTINUES TO BE UPDATED WITH THE LATEST INFORMATION ON THE INTERSECTION OF COVID-19 AND SPONDYLOARTHRITIS.SAA'S SUPPORT GROUPS-SAA'S SUPPORT GROUPS PROVIDE A SAFE AND COMPASSIONATE ENVIRONMENT WHERE ATTENDEES CAN ASK QUESTIONS, TELL THEIR STORIES, AND LISTEN TO OTHERS - ALL IN THE SPIRIT OF LEARNING FROM ONE ANOTHER. JOINING A GROUP CAN ROUND OUT YOUR SUPPORT TEAM WITH A RELIABLE SOURCE OF HELP AND CONNECTION.THOSE WHO ATTEND SAA SUPPORT GROUPS BECOME PART OF A VAST PEER NETWORK WHERE SHARED EXPERIENCE FORMS THE BASIS OF A STRONG AND VIBRANT COMMUNITY. GROUP LEADERS AND MEMBERS OFFER SUPPORT, UNDERSTANDING, AND ENCOURAGEMENT TO ONE ANOTHER ON THE JOURNEY TOWARD ACHIEVING BETTER DISEASE MANAGEMENT AND A HIGHER QUALITY OF LIFE.SAA'S SUPPORT GROUPS CONTINUE TO BE ACTIVE ACROSS THE US. ALTHOUGH WE HAVE 44 ACTIVE GROUP LEADERS ACROSS 23 STATES, ANYONE, ANYWHERE CAN PARTICIPATE IN ANY MEETING OF THEIR CHOICE. THIS YEAR (JUL 2022-JUNE 2023) WE HAVE HELD 209 MEETINGS (AVERAGING 17 PER MONTH)."LIFE AFTER DIAGNOSIS" VIDEO SERIES-MORE THAN 2,000 PEOPLE HAVE SIGNED UP FOR THIS ON-GOING 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.SPONDYSTRONG-SAA EXERCISE VIDEO COLLABORATION - SAA TEAMED UP WITH THE CO-FOUNDERS OF SPONDYSTRONG TO CREATE A SERIES OF EIGHT EXERCISE VIDEOS SPECIALLY DESIGNED FOR THOSE LIVING WITH SPONDYLOARTHRITIS. SAA RELEASED TWO VIDEOS PER WEEK DURING SEPTEMBER, ONE YOGA VIDEO AND ONE FITNESS VIDEO, IN HONOR OF PAIN AWARENESS MONTH. ALL VIDEOS REMAIN AVAILABLE ON SAA'S WEBSITE AND YOUTUBE CHANNEL. CAPES (CLINICIAN AND PATIENT EDUCATION SERIES)-SAA PARTNERED WITH SPARTAN, GRAPPA, AND NPF, TO DEVELOP A SERIES OF WEBINARS AND PODCASTS TO EDUCATE PHYSICIANS AND PATIENTS ON SPONDYLOARTHRITIS AND PSORIATIC ARTHRITIS. SEVEN WEBINARS AND SEVEN PODCASTS HAVE AIRED AND ARE AVAILABLE FOR ON-DEMAND VIEWING.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. RESULTS OF THIS STUDY WERE PUBLISHED IN ACR OPEN RHEUMATOLOGY, AND THIS USA DATASET HAS BEEN ADDED TO THE GLOBAL RESULTS FOR A CLEARER PICTURE OF HOW SPONDYLOARTHRITIS IMPACTS PEOPLE INTERNATIONALLY.GLOBAL SPONDYLOARTHRITIS SUMMIT 2023-SAA'S SIGNATURE ONLINE EDUCATIONAL PROGRAM, 5TH ANNUAL GLOBAL SPONDYLOARTHRITIS SUMMIT, TOOK PLACE MAY 5-6. 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. PATIENTS AND RESEARCHERS WERE INVITED TO PRESENT POSTERS IN THE NEW FEATURE POSTER HALL. THIS YEAR'S SUMMIT ALSO FEATURED DAILY TRIVIA QUIZZES, A LEADERBOARD CHALLENGE, LIVE TAI CHI AND BELLY DANCING ACTIVITIES, AN ACTIVITY LOUNGE, AND AN EXHIBIT HALL. MORE THAN 3,200 ATTENDEES FROM 87 COUNTRIES REGISTERED FOR THIS YEAR'S EVENT. 423816 THE PRIMARY CARE MODULE, "DEMYSTIFYING AXIAL SPONDYLOARTHRITIS IN PRIMARY CARE: RECOGNITION, DIAGNOSIS, AND WHAT COMES NEXT," CONTINUED TO ENROLL PARTICIPANTS 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, "SPOTTING AXIAL SPONDYLOARTHRITIS IN CHIROPRACTIC SETTINGS: IS AXSPA BEHIND YOUR PATIENT'S BACK PAIN?", ALSO CONTINUED TO ENROLL PARTICIPANTS 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. ANESTHESIOLOGY AND AIRWAY MANAGEMENT CONTINUING EDUCATION MODULE-THE ANESTHESIOLOGY AND AIRWAY MANAGEMENT MODULE LAUNCHED IN FEBRUARY 2023 AND IS AN ONLINE ACCREDITED COURSE FOR ANESTHESIOLOGIST'S TO PROVIDE A COMPREHENSIVE AND PRACTICAL LEARNING EXPERIENCE FOR HEALTHCARE PROFESSIONALS TO ENHANCE THEIR SKILLS IN AIRWAY MANAGEMENT FOR PATIENTS WITH ANKYLOSING SPONDYLITIS. PARTICIPANTS CAN RECEIVE ONE AMA PRA CATEGORY CREDIT, ONE ANCC CREDIT, OR ONE AAPA CREDIT DEPENDING ON THEIR CREDENTIALS. CASE-BASED MRI EDUCATIONAL TOOL FOR AXIAL SPONDYLOARTHRITIS-SAA SUPPORTED THE ENHANCEMENT BY CARE ARTHRITIS OF A NEWLY DEVELOPED MOBILE APP THAT HOSTS AND DELIVERS MRI CASE STUDIES GEARED TO RHEUMATOLOGISTS AND RADIOLOGISTS. THE PROGRAM ADDRESSES 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. UPDATES OF NEW CASES WILL BE ADDED TO THE APP THROUGHOUT THE NEXT FISCAL YEAR. 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. ROOTED IN ORIGINAL RESEARCH CONDUCTED BY SAA IN PHASE ONE DURING YEAR ONE, 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 CONTRACTED WITH A LEADING MARKETING FIRM SPECIALIZING IN HEALTHCARE AND HCP OUTREACH AND GUIDED THE PROMOTION AND DISTRIBUTION OF THESE, AND OTHER AXSPA EDUCATIONAL CONTENT, CREATED AS PART OF THIS GRANT. 350702 SOCIAL MEDIA - FACEBOOK AND TWITTER REMAIN A PRIMARY SOURCE OF EDUCATION AND AWARENESS WITH SAA'S CONSTITUENTS. DURING THE FISCAL YEAR ENDED JUNE 30, 2023, FACEBOOK EARNED 5,380,013 IMPRESSIONS AND 238,627 ENGAGEMENTS; TWITTER EARNED 206,997 IMPRESSIONS AND 5,885 ENGAGEMENTS; INSTAGRAM EARNED 1,651,534 IMPRESSIONS AND 15,505 ENGAGEMENTS; AND LINKEDIN EARNED 30,079 IMPRESSIONS AND 1,557 ENGAGEMENTS. 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.SPONDYLOARTHRITIS (SPA) AWARENESS MONTH-SPONDYLOARTHRITIS (SPA) AWARENESS MONTH WAS CELEBRATED IN MAY 2023. WHILE THE GLOBAL SPONDYLOARTHRITIS SUMMIT IS THE HIGHLIGHT OF THE MONTH, WE ALSO FEATURE OTHER CONTENT AND ACTIVITIES TO RAISE AWARENESS AND INCREASE VISIBILITY OF SPONDYLOARTHRITIS. THROUGH THESE EFFORTS, WE 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 2023 FOCUSED ON MOVING FOR AXSPA, BASED ON THE TOPIC OUR PARTNERS AT ASIF PINNED FOR WORLD AS DAY. SPANISH MULTICULTURAL OUTREACH CAMPAIGN-THE PROGRAMS TEAM TRANSLATED SEVERAL OF SAA'S EDUCATIONAL BROCHURES INTO SPANISH TO MAKE THIS IMPORTANT CONTENT ACCESSIBLE FOR A WIDER AUDIENCE THAT IS ALSO UNDERSERVED. MARKETING SUPPORTED THIS SPANISH MULTICULTURAL OUTREACH CAMPAIGN THROUGH DIGITAL MARKETING ADVERTISEMENTS PLACED ON FACEBOOK, GOOGLE PPC AND GOOGLE DISPLAY. FACEBOOK GARNERED MORE THAN 1.9 MILLION IMPRESSIONS, 20,500 LANDING PAGE VIEWS, AND 2, 650 "COULD I HAVE SPONDYLITIS" QUIZ COMPLETIONS. THE GOOGLE ADS, COMBINED, GARNERED ALMOST 1.9 MILLION IMPRESSIONS AND 400 "COULD I HAVE SPONDYLITIS" QUIZ COMPLETIONS.RHEUM 2 DX-MARKETING SUPPORTED THE RHEUM 2 DX CAMPAIGN WITH DIGITAL ADVERTISING TO REACH THE TARGET AUDIENCES FOR PATIENTS AND HCP (HEALTH CARE PRACTITIONERS). FOR THE PATIENT FACING CAMPAIGN, ADS YIELDED MORE THAN 96,000 NEW USERS AND 110,000 LANDING PAGE SESSIONS. IN ADDITION, THE DIGITAL CAMPAIGN GARNERED 17,131,304 IMPRESSIONS AND 234, 812 CLICKS COMBINED FROM GOOGLE SEARCH, GOOGLE DISPLAY, FACEBOOK ADS, AND YOUTUBE ADS. FOR THE PHYSICIAN FACING CAMPAIGN, ADS YIELDED MORE THAN 36,000 NEW USERS AND 42,000 LANDING PAGE SESSIONS. IN ADDITION, THE DIGITAL CAMPAIGN GARNERED MORE THAN 5, 768, 502 IMPRESSIONS AND 100,566 CLICKS COMBINED FROM GOOGLE DISPLAY, LINKEDIN SPONSORED MESSAGING AND LINKEDIN SPONSORED CONTENT. 148084 30000 EARLY CAREER INVESTIGATOR AWARDS (ECI)-A $30,000 ECI AWARD WAS PRESENTED IN FALL 2022 TO DR. JEAN LIEW, ASSISTANT PROFESSOR OF MEDICINE IN THE SECTION OF RHEUMATOLOGY, CHOBANIAN & AVEDISIAN SCHOOL OF MEDICINE AT BOSTON UNIVERSITY IN BOSTON, MASSACHUSETTS.DR. LIEW IS RESEARCHING THE LONG-TERM USE OF OPIOID MEDICATIONS, AND WHETHER DIFFERENT THERAPIES INCLUDING TNF INHIBITORS COULD DECREASE THE NEED TO USE THOSE MEDICATIONS. SHE IS ALSO STUDYING THE FACTORS THAT CONTRIBUTE TO DELAYED DIAGNOSIS IN PEOPLE WITH AXSPA. HER PREVIOUS RESEARCH FOCUSED ON CARDIOVASCULAR RISK, SPECIFICALLY WHETHER NSAIDS OR TNF INHIBITORS WERE ASSOCIATED WITH HYPERTENSION RISK. ADDITIONALLY, AS A MEMBER OF THE COVID-19 GLOBAL RHEUMATOLOGY ALLIANCE (GRA) AND ITS STEERING COMMITTEE, SHE HAS LED MULTIPLE PROJECTS RELATING TO DATA COLLECTION AND ANALYSIS OF THE IMPACT OF THE COVID-19 PANDEMIC ON INDIVIDUALS WITH RHEUMATIC DISEASE.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 RESEARCH PROJECTS CONTINUED IN THIS FISCAL YEAR AND WILL BE COMPLETED AND SUBMITTED FOR JOURNAL PUBLICATION IN FY 2023. THESE GRANTS WENT TO THE FOLLOWING: - MICHAEL WEISMAN, MD - INVESTIGATING THE RELATIONSHIP BETWEEN INFLAMMATORY BOWEL DISEASE (IBD) AND SPONDYLOARTHRITIS IN THE PROJECT TITLED "SPONDYLITIS IN IBD: PREVALENCE AND ASSOCIATIONS IN THE IBD SPACE." THE STUDY IS COLLABORATING WITH GASTROENTEROLOGIST AND RHEUMATOLOGIST RESEARCHERS AT SEVEN SITES IN THE USA. - KRISTI KUHN, MD - BASED ON HER LAB'S NOVEL AND EXCITING WORK THAT SHOWS HOW T CELLS IN THE GUT MIGRATE TO THE JOINT WHERE THEY PRODUCE CYTOKINES TNF AND IL-17 AND CONTRIBUTE TO JOINT PATHOLOGY. SPA HAS LONG BEEN SUSPECTED TO HAVE A CONNECTION WITH INTESTINAL IMMUNITY, AND THIS WORK DEMONSTRATES A DIRECT LINK BETWEEN THE TWO ANATOMIC SITES. THIS RESEARCH EXTENDS THE WORK TO UNDERSTAND WHY THE T CELLS LEAVE THE GUT AND MIGRATE TO THE JOINT THROUGH EVALUATION OF THE GENE REGULATORY AND TRANSCRIPTIONAL CHANGES THAT OCCUR DURING THIS MIGRATION. THE RESULTS WILL LEAD TO MECHANISTIC STUDIES TO VALIDATE THE IDENTIFIED PATHWAYS. ULTIMATELY HOPES TO THERAPEUTICALLY TARGET THIS MIGRATION FOR THE TREATMENT 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.MUCH REMAINS UNKNOWN REGARDING THE CAUSE AND TREATMENT OF SPONDYLOARTHRITIS. SAA IS CONTINUING THE TRADITION OF PROACTIVELY ADDRESSING RESEARCH GAPS THROUGH THE 2023 SPONDYLOARTHRITIS UNMET RESEARCH NEEDS CONFERENCE IV. THE UPCOMING CONFERENCE WILL BE HELD ON SEPTEMBER 28 & 29, 2023 ON THE NIH CAMPUS. PROGRAMMING AND PLANNING FOR THE CONFERENCE WERE DONE IN THIS FISCAL YEAR (FY22-23).ADVOCACY-THE ADVOCACY PROGRAM CONTINUES TO GROW IN TERMS OF THE NUMBER OF INITIATIVES AND MEMBER ADVOCATES. SAA SENDS LETTERS TO ELECTED OFFICIALS REGARDING POLICIES' IMPACT ON PEOPLE LIVING WITH SPA. IN ADDITION, THROUGH EMAIL, ARTICLES, AND SOCIAL MEDIA, SAA PROVIDES INFORMATION ON HOW PUBLIC POLICIES AFFECT PATIENTS. SAA WEBSITE FACILITATES THE ABILITY OF MEMBERS TO CONTACT THEIR OWN ELECTED OFFICIALS TO ADVOCATE ON THEIR OWN BEHALF. AT ANY GIVEN TIME DURING THE YEAR, THERE ARE ROUGHLY FIFTY ACTIVE STATE, FEDERAL AND MEDIAL CAMPAIGNS. SPECIFICALLY, ACTIVITIES INCLUDED STATE PROCLAMATIONS FOR SPA AWARENESS MONTH; SIGN-ON LETTERS FOR STEP THERAPY, SAFE STEP ACT, PROTECTION FROM INSURANCE ACCUMULATOR PROGRAMS, IMPROVED PATIENT ACCESS, HEALTH DATA PRIVACY, AND NUMEROUS OTHER KEY TOPIC AREAS THAT IMPACT OUR SPONDYLOARTHRITIS COMMUNITY. THIS FISCAL YEAR, SAA ADDED PETITIONS AND SURVEYS TO THE EXISTING ENGAGEMENT AND INFORMATION CAMPAIGNS. 148084 30000 1812486 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 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 21 0 15 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 246302 0 6489 DIANN PETERSON CHIEF PHILANTHROPY OFFICER 40.00 X 123563 0 17848 RICHARD HOWARD CHIEF MISSION DELIVERY OFFICER 40.00 X 133238 0 14691 503103 0 39028 3 0 1 0 0 2200809 2200809 PUBLICATION SALES 611710 5120 5120 5120 142607 142607 2348536 5120 0 142607 30000 30000 248226 198580 24823 24823 1025964 812525 178196 35243 25975 21413 3890 672 112294 92011 15680 4603 92450 71510 16188 4752 70660 8900 61760 189353 182423 6930 253120 192986 48949 11185 41418 35718 3500 2200 49994 36944 10950 2100 38586 37778 808 73681 73681 22217 18017 2600 1600 2273938 1812486 373466 87986 235048 350400 7300421 7092825 32000 18092 25276 44211 24075 20772 20136 279503 313090 39452 24657 3618 3618 7928906 7830002 582891 413366 582891 413366 X 4296789 4497313 3049226 2919323 7346015 7416636 7928906 7830002 74598 -3977 0 X X 0 1 X 1 0 X 1941665 2181281 2996504 5505466 2200809 14825725 1941665 2181281 2996504 5505466 2200809 14825725 7360869 7464856 68076 65844 61787 51298 142607 389612 15215337 29712 0.49060 0.50120 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 33118 17148 15970 11093 6927 4166 20136 X 2344559 -3977 -3977 2348536 0 2348536 2273938 0 2273938 0 2273938 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, 2023. 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 BOSTON UNIVERSITY SCHOOL OF MEDICINE 650 ALBANY STREET SUITE X200 BOSTON MA 02118 043314093 501(C)(3) 30000 0 EARLY INVESTIGATOR AWARD 1 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 246302 0 0 0 0 0 6489 0 0 0 252791 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 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.