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      <Desc>PATIENT CONFERENCES, SEMINARS, AND SUPPORTTHE ORGANIZATION SPONSORED PATIENT EDUCATION AND SUPPORT PROGRAMS THROUGH THE USE OF VARIOUS MEDIA. THE INTERACTIVE WEBSITE LOCATED AT SPONDYLITIS.ORG SERVES MORE THAN 500,000 UNIQUE VISITORS PER QUARTER BASED ON GOOGLE ANALYTICS REPORTS. THIS AS LIFE LIVE (TASLL)-DAN REYNOLDS AND NOVARTIS PHARMACEUTICALS HAVE PARTNERED WITH THE ORGANIZATION TO BRING AN INTERACTIVE ONLINE TALK SHOW VIDEO SERIES, THIS AS LIFE LIVE (TASLL), TO LIFE. THE ORGANIZATION PROVIDES GUIDANCE ON THE PROJECT, SUGGESTS INTERVIEWEES, ATTENDS THE VIDEO SHOOTS, AND ENSURES ACCURACY OF SPA INFORMATION RECORDED AND SHARED. A TOTAL OF SIX EPISODES WERE RELEASED DURING THE YEAR ENDED JUNE 30, 2018 AND A TOTAL OF NINE EPISODES HAVE BEEN RELEASED SINCE THE PROJECT LAUNCHED AT THE BEGINNING OF 2016.LIFE IMPACT SURVEY-A SURVEY WAS CONDUCTED WITH PATIENTS TO IDENTIFY THE PROPORTION OF PATIENTS WITH DELAYED DIAGNOSIS, REASONS, AND TREATMENT. THINK SPONDYLITIS AWARENESS CAMPAIGN-THE ORGANIZATION DESIGNED AND PROVIDED CUSTOM-MADE THINK SPONDYLITIS POSTCARDS AND INVITED THE ORGANIZATION'S MEMBERSHIP AND CONSTITUENTS TO SEND THESE CARDS WITH PERSONAL MESSAGES TO PHYSICIANS, WITH THE GOAL OF RAISING AWARENESS AMONG MEDICAL PROFESSIONALS, IN HONOR OF SPONDYLITIS AWARENESS MONTH AND WORLD AS DAY. WHITE BOARD ANIMATION VIDEO RELEASE: HAVE YOU BEEN DIAGNOSED WITH SPONDYLITIS?-THIS VIDEO SERIES IS TARGETED TO THE NEWLY DIAGNOSED WITH THE AIM OF INTRODUCING THE ORGANIZATION AND RESOURCES IT OFFERS.SPONDYLITIS PLUS-MEMBERS OF THE SPONDYLITIS ASSOCIATION OF AMERICA RECEIVE A COPY OF THE ORGANIZATION'S PRINT PUBLICATION SPONDYLITIS PLUS FREE OF CHARGE, ON A QUARTERLY BASIS. MORE THAN 5,000 COPIES ARE DISTRIBUTED QUARTERLY.ESUN-MORE THAN 24,000 PEOPLE ARE SUBSCRIBED TO AND RECEIVE THE ORGANIZATION'S MONTHLY SPONDYLITIS EDUCATION AND AWARENESS E-NEWSLETTER.</Desc>
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        <Desc>PHYSICIAN EDUCATION-THE ORGANIZATION ATTENDED AND EXHIBITED AT THE NOVEMBER 2017 AMERICAN COLLEGE OF RHEUMATOLOGY CONFERENCE (ACR) IN SAN DIEGO, CALIFORNIA. IN CONNECTION WITH THIS EVENT, THE ORGANIZATION HELD ITS SPA EDUCATION SEMINAR AND IN-PERSON MEDICAL AND SCIENTIFIC ADVISORY BOARD MEETING.PRIMARY CARE MEDICAL CONFERENCES (PRIMED)-IN AN EFFORT TO INCREASE EDUCATION AND AWARENESS, IMPROVE EARLIER DIAGNOSIS OF THE DISEASE WITH PRIMARY CARE PHYSICIANS, AND, ULTIMATELY, REFERRAL TO RHEUMATOLOGISTS, THE ORGANIZATION MADE A STRATEGIC DECISION TO INCREASE ITS PRESENCE BY EXHIBITING AT FIVE ANNUAL NATIONWIDE/REGIONAL CONFERENCES THROUGHOUT THE UNITED STATES. IN THE SPRING OF 2018, THE ORGANIZATION EXHIBITED IN FT LAUDERDALE, FLORIDA; HOUSTON, TEXAS; AND ANAHEIM, CALIFORNIA. MORE THAN 1,000 LEADS FOR ADDITIONAL INFORMATION FROM HEALTHCARE PROVIDERS HAVE BEEN GENERATED FROM THE ORGANIZATION'S ATTENDANCE TO DATE. ADDITIONAL LOCATIONS ARE SCHEDULED IN THE FALL OF 2018. A SECOND PHASE OF THIS STRATEGY FOR 2018-19 WILL BE TO CONTINUE EXHIBITING AND SEEKING FUNDING FOR UNBRANDED PRESENTATIONS TO BE LED BY RHEUMATOLOGISTS IN THE REGION OF THE CONFERENCE.SPONDYLOARTHRITIS RESEARCH AND TREATMENT NETWORK (SPARTAN)-EACH YEAR, THE ORGANIZATION PARTICIPATES IN THE SPARTAN CONFERENCE. IN 2017, IT WAS HELD IN BOSTON, MASSACHUSETTS. ONE OF THE KEY AREAS ON THE AGENDA WERE BREAKOUT SESSIONS DEVOTED TO DISCUSSIONS, FOLLOW-UP, AND NEXT STEPS FROM THE ORGANIZATION'S UNMET NEEDS CONFERENCE. EUROPEAN CONGRESS OF RHEUMATOLOGY (EULAR)-IN JUNE 2017, THE ORGANIZATION ATTENDED EULAR, SHARING EXHIBIT SPACE WITH THE ANKYLOSING SPONDYLITIS INTERNATIONAL FEDERATION (ASIF). THREE SPONDYLITIS ASSOCIATION OF AMERICA ABSTRACTS AND ONE POSTER SESSION (FROM THE ORGANIZATION'S LIFE IMPACT SURVEY) WERE PRESENTED AT THIS CONFERENCE.ACR/SAA/SPARTAN TREATMENT GUIDELINES UPDATE-ACR AND THE ORGANIZATION ARE FUNDING PARTNERS IN THIS UPDATE, SCHEDULED TO BE RELEASED IN LATE 2018 OR EARLY 2019. THE ORGANIZATION HAS IDENTIFIED AND RECRUITED TWO PATIENTS TO BE INCLUDED ON THE VOTING PANEL WHO WILL REPRESENT THE PATIENT VOICE AND TAKE PART IN THE DECISION-MAKING PROCESS. THE ORGANIZATION REMAINS CLOSELY ENGAGED AND INVOLVED THROUGHOUT THE MEETING PROCESS.</Desc>
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        <Desc>SPONDYLOARTHRITIS 2017: UNMET NEEDS CONFERENCE III-FOR TWO DAYS IN SEPTEMBER 2017, THE ORGANIZATION BROUGHT TOGETHER AN INTERNATIONAL GROUP OF LEADING RESEARCHERS TO THE NATIONAL INSTITUTES OF HEALTH (NIH) IN BETHESDA, MARYLAND, TO IDENTIFY PRESSING GAPS, SHARE INSIGHTS, DISCUSS SCIENTIFIC AND TREATMENT ISSUES, AND PROVIDE DIRECTION FOR THE NEXT DECADE OF SPONDYLOARTHRITIS RESEARCH. THE SPONDYLOARTHRITIS 2017: UNMET NEEDS CONFERENCE III, HOSTED BY THE ORGANIZATION IN COLLABORATION WITH THE NATIONAL INSTITUTE OF ARTHRITIS, MUSCULOSKELETAL AND SKIN DISEASES (NIAMS), GENERATED INTERDISCIPLINARY COLLABORATION AMONG RESEARCHERS AND CLINICIANS, AND OPENED NEW AREAS OF INVESTIGATION TO EXPAND THE BREADTH AND DEPTH OF SPONDYLOARTHRITIS RESEARCH. THE GOAL OF THIS CONFERENCE WAS TO GATHER LEADING EXPERTS IN THEIR FIELDS TO NOT ONLY DISCUSS THE PROGRESS MADE TO DATE, BUT TO ALSO EXAMINE THE ROAD THAT LIES AHEAD IN TERMS OF RESEARCH AND TREATMENT OF ALL THE CONDITIONS ASSOCIATED WITH THIS DISEASE.EARLY CAREER INVESTIGATOR AWARDS (ECI)-TWO ECI AWARDS WERE PRESENTED IN 2018 FOR A TOTAL OF $40,000 ($20,000 EACH). THEY WERE AWARDED TO THE FOLLOWING INSTITUTIONS:- BOSTON UNIVERSITY AND THE BOSTON VA - DR. MAUREEN DUBREUIL, A RHEUMATOLOGIST AND RESEARCHER AT BOSTON UNIVERSITY AND THE BOSTON VA FOCUSES HER RESEARCH ON COMPLICATIONS OF SPONDYLOARTHRITIS AND SIDE EFFECTS OF TREATMENT. IN ADDITION TO HER RESEARCH, DR. DUBREUIL IS WORKING TO EDUCATE THE NEXT GENERATION OF DOCTORS ON EVALUATING PATIENTS WITH BACK PAIN, AND CARING FOR THOSE WITH SPONDYLOARTHRITIS. - UNIVERSITY OF COLORADO HEALTH SCIENCES CENTER - DR. KRISTINE KUHN, WHO OBTAINED HER MD AND PHD AT THE UNIVERSITY OF COLORADO HEALTH SCIENCES CENTER, DEVELOPED HER INTEREST IN RHEUMATOLOGY WHILE WORKING ON HER PHD IN ARTHRITIS. AFTER GRADUATING MEDICAL SCHOOL, DR. KUHN MOVED TO ST. LOUIS, MISSOURI TO COMPLETE HER RESIDENCY IN INTERNAL MEDICINE AND FELLOWSHIP IN RHEUMATOLOGY AT BARNES-JEWISH HOSPITAL AND WASHINGTON UNIVERSITY. DURING THIS TRAINING, DR. KUHN OBSERVED MANY CHALLENGES THAT INDIVIDUALS FACE IN THE DIAGNOSIS AND TREATMENT OF SPONDYLOARTHRITIS. SHE BEGAN FOCUSING ON THIS TOPIC IN HER RESEARCH AND CLINICAL ACTIVITIES, AS PART OF HER OWN RESEARCH PROGRAM, WHEN SHE RETURNED TO COLORADO IN 2013 AS A FACULTY MEMBER AT THE UNIVERSITY OF COLORADO SCHOOL OF MEDICINE. IN ADDITION TO FUNDING ECI, THE ORGANIZATION RECEIVES FUNDING REQUESTS FROM OUTSIDE SOURCES TO SUPPORT RESEARCH RELATED TO SPONDYLITIS. BECAUSE THE ORGANIZATION HAS LIMITED RESOURCES FOR RESEARCH FUNDING, IT IS IMPERATIVE THAT ANY RESEARCH PROPOSALS MAKE OPTIMAL USE OF THE ORGANIZATION'S LIMITED RESOURCES. IN THE SPRING OF 2018, THE ORGANIZATION FUNDED $125,000 RESTRICTED TO ADDITIONAL RESEARCH STUDY GRANTS OUTSIDE OF THE ECI AWARDS. THESE ADDITIONAL RESEARCH GRANTS ARE DETAILED BELOW:- FUNDING RESEARCH AT THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO (UCSF), UNIVERSITY OF ALABAMA, BIRMINGHAM (UAB); AND QUEENSLAND UNIVERSITY OF TECHNOLOGY, AUSTRALIA (QUT). DR. LIANNE GENSLER, A RHEUMATOLOGIST AT UCSF MEDICAL CENTER AND THE DIRECTOR OF THE ANKYLOSING SPONDYLITIS CLINIC, WAS SELECTED ALONG WITH DR. MATTHEW STOLL (UAB) AND DR. MATTHEW BROWN (QUT) AND RECEIVED APPROVAL FOR THEIR MICROBIOME OF OFFSPRING IN ANKLOSING SPONDYLITIS (MOSAS) RESEARCH STUDY. MULTIPLE GENETIC AND ENVIRONMENTAL FACTORS RESULT IN THE DEVELOPMENT OF SPONDYLOARTHRITIS DISEASES, INCLUDING ANKYLOSING SPONDYLITIS (AS). THIS WILL BE THE FIRST STUDY OF ITS KIND TO EVALUATE THE PRE-DISEASE MICROBIOTA IN PATIENTS WITH A HIGHER LIKELIHOOD OF DEVELOPING ARTHRITIS.- FUNDING RESEARCH AT OREGON HEALTH AND SCIENCE UNIVERSITY (OHSU) THROUGH DRS. MARK ASQUITH AND JAMES ROSENBAUM. THEIR RESEARCH FOCUSES ON THE POTENTIAL ROLE FOR FUNGUS OR YEAST IN THE PATHOGENESIS OF SPONDYLOARTHRITIS. MICROBIOTA IS THE COMMUNITY OF MICRO-ORGANISMS THAT INHABIT THE INTERIOR AND EXTERIOR OF THE HUMAN BODY AT VARIOUS TISSUE SITES. DRS. ASQUITH AND ROSENBAUM'S RESEARCH UTILIZES FUNGAL MICROBIOTA TO INVESTIGATE A NOVEL THERAPEUTIC STRATEGY TO REDUCE OR PREVENT DISEASE SYMPTOMS IN AS PATIENTS.THE ORGANIZATION CONTINUES TO ADVANCE THE BELIEF THAT SUPPORTING RESEARCH WILL LEAD TO AN EVENTUAL CURE. IN THE SHORT-TERM, INSIGHTS GAINED FROM THESE STUDIES SHOULD ALSO EMPOWER AND ENGAGE CLINICIANS AND OTHERS IN THE MEDICAL COMMUNITY WITH OPPORTUNITIES TO CRITICALLY EVALUATE INFORMATION THROUGH, FOR EXAMPLE, PATIENT INTERVIEWS, PHYSICAL EXAMS, AND LABORATORY TESTS, IN ORDER TO FORMULATE A DIAGNOSIS AND DEVISE NEW TREATMENT OPTIONS.SOCIAL MEDIA-FACEBOOK AND TWITTER REMAIN A SOURCE OF EDUCATION AND AWARENESS WITH THE ORGANIZATION'S CONSTITUENTS. THE ORGANIZATION'S COMMUNITY FORUMS CONTINUE TO BE ACTIVE NOT ONLY FOR THE NEWLY-DIAGNOSED BUT THOSE LIVING WITH THIS DISEASE FROM A FEW YEARS TO ALMOST A LIFETIME.</Desc>
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        <PersonNm>ELLEN CARROLL</PersonNm>
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      <Form990PartVIISectionAGrp>
        <PersonNm>DAVID HALLEGUA</PersonNm>
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        <PersonNm>CHARLOTTE K HOWARD</PersonNm>
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      <Form990PartVIISectionAGrp>
        <PersonNm>LESLIE KAUTZ</PersonNm>
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        <PersonNm>PAULA OLSIEWSKI</PersonNm>
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      <SupplementalInformationDetail>
        <FormAndLineReferenceDesc>PART X, LINE 2:</FormAndLineReferenceDesc>
        <ExplanationTxt>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, 2018. 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.</ExplanationTxt>
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          <BusinessNameLine1Txt>OREGON HEALTH &amp; SCIENCE UNIVERSITY FOUNDATION</BusinessNameLine1Txt>
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          <CityNm>PORTLAND</CityNm>
          <StateAbbreviationCd>OR</StateAbbreviationCd>
          <ZIPCd>97205</ZIPCd>
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        <IRCSectionDesc>501(C)(3)</IRCSectionDesc>
        <CashGrantAmt>25000</CashGrantAmt>
        <PurposeOfGrantTxt>HLA B27 MICROBIAL POPULATION OF THE BOWEL STUDY</PurposeOfGrantTxt>
      </RecipientTable>
      <RecipientTable>
        <RecipientBusinessName>
          <BusinessNameLine1Txt>UNIVERSITY OF COLORADO SCHOOL OF MEDICINE</BusinessNameLine1Txt>
        </RecipientBusinessName>
        <USAddress>
          <AddressLine1Txt>1775 AURORA COURT</AddressLine1Txt>
          <CityNm>AURORA</CityNm>
          <StateAbbreviationCd>CO</StateAbbreviationCd>
          <ZIPCd>80045</ZIPCd>
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        <RecipientEIN>846000555</RecipientEIN>
        <IRCSectionDesc>501(C)(3)</IRCSectionDesc>
        <CashGrantAmt>20000</CashGrantAmt>
        <PurposeOfGrantTxt>RESEARCH IN AXSPA</PurposeOfGrantTxt>
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        <ExplanationTxt>RESEARCHERS ARE REQUIRED TO PROVIDE THE AGENCY WITH PROGRESS REPORTS BASED ON A VARIETY OF MILESTONES, INDIVIDUAL TO EACH STUDY, AND TO ENSURE THAT ANY PUBLICATION IN PEER REVIEW ACKNOWLEDGES THE AGENCYS FUNDING SUPPORT TOWARD THE EFFORT.</ExplanationTxt>
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        <ExplanationTxt>ALL DIRECTORS AND SENIOR EMPLOYEES ARE REQUIRED TO COMPLETE AND SIGN A DISCLOSURE FORM LISTING ANY POTENTIAL CONFLICTS OF INTEREST BY SEPTEMBER 30, ANNUALLY.</ExplanationTxt>
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        <ExplanationTxt>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.</ExplanationTxt>
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        <ExplanationTxt>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.</ExplanationTxt>
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