SPONDYLITIS ASSOCIATION OF AMERICA
16430 VENTURA BLVD NO 300, ENCINO, CA 91436 www.spondylitis.org

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Organizations Filed Purposes: 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.

ADVANCING RESEARCH, ACCELERATED DIAGNOSIS, OPTIMUM TREATMENT, PUBLIC AWARENESS AND HEALTH CARE PROFESSIONAL EDUCATION IN SPONDYLOARTHRITIS

PATIENT CONFERENCES, EDUCATION, AND PUBLICATIONSPATIENT CONFERENCES, SEMINARS, AND SUPPORT-THE ORGANIZATION SPONSORED PATIENT EDUCATION AND SUPPORT PROGRAMS THROUGH THE USE OF VARIOUS MEDIA PLATFORMS AND OUTLETS. THE INTERACTIVE WEBSITE LOCATED AT SPONDYLITIS.ORG SERVES MORE THAN 500,000 UNIQUE VISITORS. PATIENT EDUCATION SEMINARS-PATIENT EDUCATION SEMINARS WERE HELD IN ATLANTA AND OTHERS MOVED TO ONLINE IN MARCH 2020 WHEN THE COVID-19 PANDEMIC STARTED. FACEBOOK "LIVE" SEMINARS WERE ALSO CONDUCTED. THESE SEMINARS ARE RECORDED AND AVAILABLE FOR FUTURE USE THROUGH SAA WEBSITE. AWARENESS AND SUPPORT GROUPS-SAA'S SUPPORT GROUPS CONTINUE TO BE ACTIVE ACROSS THE US. THERE WERE 50 ACTIVE GROUPS, IN 31 STATES, WITH 71 SUPPORT GROUP LEADERS. ONLINE SUPPORT GROUPS MADE AVAILABLE DURING COVID-19 FOR ALL PARTICIPANTS AS NEEDED. MORE THAN 220 MEETINGS WERE HELD THROUGH JUNE 2020. THE NUMBER OF GROUPS HAS HELD STEADY DURING THIS REPORTING PERIOD AS OUR COMMUNITY HAS ACCLIMATED TO LIFE DURING THE PANDEMIC. LIFE IMPACT SURVEY-RESULTS FROM THIS SURVEY CONTINUED TO BE DELIVERED THROUGH THIS REPORTING PERIOD. ABSTRACTS AND POSTERS WERE COMPLETED AND PRESENTED AT VARIOUS CONFERENCES THROUGHOUT THE YEAR. THE SURVEY WAS CONDUCTED WITH PATIENTS TO IDENTIFY PROPORTION OF PATIENTS WITH DELAYED DIAGNOSIS, REASONS, AND TREATMENT. RESULTS FROM THE SURVEY CONTINUED TO BE USED THROUGHOUT THE YEAR WITH ANALYSIS OF SPECIFIC AREAS TO CREATE WEBINARS AND OTHER EDUCATIONAL PROGRAMMING OPPORTUNITIES.SPONDYLITIS PLUS-MEMBERS OF THE SAA RECEIVE A QUARTERLY COPY OF THE ORGANIZATION'S PREMIERE PRINT PUBLICATION. SPONDYLITIS PLUS TACKLES 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 5,000 COPIES ARE DISTRIBUTED QUARTERLY.ESUN-MORE THAN 43,000 PEOPLE SUBSCRIBE TO AND RECEIVE SAA'S MONTHLY SPONDYLITIS EDUCATION AND AWARENESS E-NEWSLETTER. IT CONTAINS A VARIETY OF SPONDYLITIS-RELATED CONTENT, SUCH AS NEWS, RESEARCH OPPORTUNITIES, STORIES FROM SPONDYLITIS PATIENTS, AND MORE.2019 AXSPA TREATMENT RECOMMENDATION: A BRIEF OVERVIEW FOR PATIENTS AND FAMILIES-WORKING WITH A VOLUNTEER TASK FORCE COMPRISED OF PHYSICIANS AND PATIENTS, WHO PROVIDED DIRECTION, FORMAT, AND CONTENT TO TRANSLATE THE PHYSICIAN-BASED TREATMENT GUIDELINES TO A PATIENT FRIENDLY VERSION. THE COMPLETED DOCUMENT WAS FIRST SHARED AT ACR 2019 (AMERICAN COLLEGE OF RHEUMATOLOGY CONFERENCE) AND THEN SHARED WITH THE SPA PATIENT COMMUNITY.

PHYSICIANS EDUCATION (COVID-19, RHEUMATOLOGY)COVID19 RESOURCE HUB AND RESEARCH SURVEY-AS QUICKLY AS THE PANDEMIC HIT, SAA ESTABLISHED A COVID19 HUB. AFTER LISTENING TO QUESTIONS AND CONCERNS FROM OUR COMMUNITY, SAA CREATED CONTENT FEATURING EXPERT ADVICE SPECIFIC TO THE SPA COMMUNITY. FACEBOOK LIVE PRESENTATIONS ALONG WITH TWITTER AND OTHER DIGITAL PLATFORMS ARE BEING USED FOR COMMUNICATION. OUR GOAL CONTINUES TO PROVIDE THE MOST ACCURATE AND UP-TO-DATE INFORMATION TO HELP NAVIGATE THESE UNCERTAIN TIMES AND HELP PATIENTS MANAGE THEIR SPONDYLOARTHRITIS. IN MAY 2020, SAA, IN PARTNERSHIP WITH MEMBERS OF ITS MEDICAL AND SCIENTIFIC ADVISORY BOARD (MSAB), SPEARHEADED THE CREATION OF A GLOBAL COVID19 - SPA PATIENT REGISTRY. ADDRESSING THE MOST PRESSING QUESTIONS OF WHETHER PEOPLE ARE AT GREATER OR LESS RISK FOR CONTRACTING THE VIRUS AND SEVERE OUTCOMES UNDERSTANDING THE EFFECTS OF SPONDYLOARTHRITIS, AND THE MEDICATIONS USED IN TREATING IT, ON COVID-19 IS CRUCIAL FOR PATIENTS, DOCTORS, AND RESEARCHERS ALIKE. TAKING PART IN THIS LONGITUDINAL PATIENT RESEARCH SURVEY ALONG WITH A CONTROL GROUP OF PARTICIPANTS WILL HELP ANSWER CRITICAL QUESTIONS FOR THE BENEFIT OF EVERYONE IN THE SPONDYLOARTHRITIS COMMUNITY. SAA RESPECTS AND PROTECTS OUR COMMUNITY'S PRIVACY AND DOES NOT SELL PERSONAL DATA. IN ADDITION, AS THIS WAS A GLOBAL SURVEY, SAA CONTRACTED THE TRANSLATION OF THIS SURVEY INTO AT LEAST 13 DIFFERENT LANGUAGES.GLOBAL SPONDYLOARTHRITIS SUMMIT 2020-SAA'S SIGNATURE ONLINE EDUCATIONAL PROGRAM, 2ND ANNUAL GLOBAL SPONDYLOARTHRITIS SUMMIT, TOOK PLACE MAY 1-7. 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 WITH ATTENDEES. SAA ALSO PROVIDED FOREIGN LANGUAGE SUBTITLES FOR THE PRESENTATIONS. SUBTITLES WERE AVAILABLE IN NINE LANGUAGES. EMT VIDEO RE-ACCREDITATION INITIATIVE-THE EMERGENCY FIRST RESPONDER EDUCATIONAL VIDEO AND A NEW COURSE, OFFERING ONE-HOUR OF FREE CONTINUING EDUCATION CREDITS FOR EMTS (AND NOW ALSO NURSES) WAS FINALIZED AND ROLLED OUT IN DECEMBER 2019. THIS PROGRAM IS DESIGNED TO PROVIDE THE EDUCATION AND TRAINING TO ENSURE THAT ALL EMERGENCY FIRST RESPONDERS, INCLUDING EMERGENCY MEDICAL TECHNICIANS, EMERGENCY ROOM NURSES, PARAMEDICS, AND FIRE AND POLICE SAFETY PERSONNEL HAVE AN OPPORTUNITY, AND INCENTIVE IN THE FORM OF FREE CEU HOURS, TO LEARN THE PROPER AND SAFE TECHNIQUES FOR THE CARE AND HANDLING OF INDIVIDUALS WITH SPA. PROMOTION OF THIS TRAINING PROGRAM INCLUDES ONLINE, SOCIAL MEDIA, GRASSROOTS - THROUGH OUR COMMUNITY, AS WELL AS DIRECT MAIL PROMOTION. AS A BONUS, WE WERE ABLE TO SECURE FREE HOSTING OF OUR COURSE (PROVIDING INCREASED VISIBILITY) ON TWO ADDITIONAL ORGANIZATIONS' WEBSITES: FIRSTFORWARD AND PATIENT SAFETY MOVEMENT FOUNDATION.PRIMARY CARE, AND CHIROPRACTOR ACCREDITED ONLINE EDUCATION: FOCUSING ON SHORTENING THE SPA DIAGNOSTIC DELAY-SAA HAS BEGUN THE PLANNING STAGES OF THIS TWO-PRONGED PROGRAM. WORKING CLOSELY WITH RHEUMATOLOGISTS DR. SONAM KIWALKAR, THE PHYSICIAN LEAD ON THIS PROJECT AND SAA ECI AWARDEE, DR. ABHIJEET DANVE, TO DEVELOP TWO ACCREDITED ONLINE EDUCATIONAL MODULES GEARED TO TRAINING NON-RHEUMATOLOGISTS IN BETTER RECOGNIZING UNDIAGNOSED SPA IN THEIR PATIENTS. ONE MODULE WILL BE GEARED TO PRIMARY CARE PHYSICIANS (WITH ACCREDITATION BEING PROVIDED TO MDS, NPS, AND PAS). THE SECOND MODULE WILL BE GEARED TO CHIROPRACTORS (WITH ACCREDITATION FOR DOCTORS OF CHIROPRACTIC). OUTREACH TO ADDITIONAL HEALTHCARE PRACTITIONERS (HCPS) HAS TAKEN PLACE, AND TWO DIFFERENT ADVISORY COMMITTEES WERE FORMED. EACH COMMITTEE WILL INCLUDE HCPS REPRESENTING THE POPULATION BEING TARGETED (THE PCP CONTENT ADVISORY COMMITTEE WILL INCLUDE PCPS, AND THE CHIROPRACTIC CONTENT ADVISORY COMMITTEE WILL INCLUDE CHIROPRACTORS.) THE PROJECTED TIMELINE FOR COMPLETION IN ITS ENTIRETY IS OCTOBER 2021.

SPONDYLOARTHRITIS RESEARCHEARLY CAREER INVESTIGATOR AWARDS (ECI)-TWO ECI AWARDS WERE PRESENTED IN FY19-20 FOR $20,000 EACH TOTALING $40,000. ONE WAS AWARDED TO UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL (UMMS) AND THE OTHER TO YALE UNIVERSITY.DR. SHAO-HSIEN LIU IS AN ASSISTANT PROFESSOR IN THE DIVISION OF EPIDEMIOLOGY, AT THE UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL (UMMS). HE IS AN EARLY STAGE MUSCULOSKELETAL EPIDEMIOLOGIST WITH YEARS OF CLINICAL PRACTICE AS A PHYSICAL THERAPIST. DR. LIU HAS EXTENSIVE EXPERIENCE USING NATIONALLY REPRESENTATIVE SAMPLES WITH COMPLEX, MULTISTAGE DESIGNS AND OBSERVATIONAL DATA WITH MEASUREMENTS OF PATIENT-REPORTED OUTCOMES AND PHYSICAL ACTIVITY. DR. LIU IS A MEMBER OF THE SPONDYLOARTHRITIS RESEARCH AND TREATMENT NETWORK (SPARTAN) AND THE AMERICAN COLLEGE OF RHEUMATOLOGY (ACR).DR. ABHIJEET DANVE IS A RHEUMATOLOGIST AND ASSISTANT PROFESSOR OF CLINICAL MEDICINE AT YALE UNIVERSITY, WITH PARTICULAR INTEREST IN CLINICAL AND TRANSLATIONAL RESEARCH FOCUSED ON EARLY DIAGNOSIS OF AXIAL SPONDYLOARTHRITIS (AXSPA). HE IS THE FOUNDING DIRECTOR OF THE SPONDYLOARTHRITIS PROGRAM AT YALE. DR. DANVE HAS CONTRIBUTED ORIGINAL RESEARCH ARTICLES, SYSTEMATIC REVIEWS AND REVIEW ARTICLES IN THE FIELD OF AXSPA. HIS PUBLICATIONS IN RESPECTED JOURNALS COVER VARIOUS ASPECTS OF AXSPA SUCH AS BIOMARKERS, SCREENING AND REFERRAL, TREAT-TO-TARGET STRATEGY, THE ROLE OF COMPLEMENTARY MEDICINE AND COMORBIDITIES. HE IS A MEMBER OF THE SPONDYLOARTHRITIS RESEARCH AND TREATMENT NETWORK (SPARTAN), AND HAS SERVED ON THE REGISTRY SUBCOMMITTEE OF SPARTAN SINCE 2017.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. TWO FUNDING REQUESTS WERE APPROVED. THE FIRST FUNDING WENT TO CHILDREN'S HOSPITAL OF PHILADELPHIA. AND THE SECOND TO UNIVERSITY OF COLORADO SCHOOL OF MEDICINE ANSCHUTZ MEDICAL CAMPUS. - PAMELA WEISS, MD, MSCE, DIRECTOR OF CLINICAL RESEARCH AND ATTENDING, DIVISION OF RHEUMATOLOGY, CHILDREN'S HOSPITAL OF PHILADELPHIA ASSOCIATE PROFESSOR OF PEDIATRICS AND EPIDEMIOLOGY, UNIVERSITY OF PENNSYLVANIA PERELMAN SCHOOL OF MEDICINE RECEIVED FUNDING FOR AN "EXERCISE FOR DEVELOPMENT OF PEDIATRIC AXIAL DISEASE CLASSIFICATION CRITERIA", A COMPANION PROJECT TO AN NIH RO1 GRANT WITH DR. WEISS TO FILL THE UNMET NEED FOR A PEDIATRIC CLASSIFICATION CRITERIA. THE SAA FUNDING IS TO CONVENE AN IN-PERSON MEETING OF LEADING EXPERTS IN JUVENILE SPONDYLOARTHRITIS. DUE TO THE NOVEL CORONAVIRUS STAY AT HOME TRAVEL RESTRICTIONS, THE MEETING IN GHENT (EUROPE) WAS POSTPONED. THE NEW PROPOSED MEETING WILL BE IMMEDIATELY PRIOR TO THE SPRING 2021 SPARTAN CONFERENCE. - KRISTINE KUHN, MD, PHD, BOETTCHER INVESTIGATOR, ASSISTANT PROFESSOR OF MEDICINE DIVISION OF RHEUMATOLOGY UNIVERSITY OF COLORADO ANSCHUTZ MEDICAL CAMPUS RECEIVED FUNDING FOR "MICROBIOME PRODUCED INDOLE IN THE EXPANSION OF ILC3S IN SPA." IT IS BASED ON RECENT OBSERVATIONS THAT SUBJECTS WITH AS, COMPARED TO HEALTHY CONTROLS, HAVE AN INCREASE IN INDOLE, THE BACTERIA-PRODUCED METABOLITE OF TRYPTOPHAN, AND AN ALTERATION IN THEIR MICROBIOME THAT IS CONSISTENT WITH THE PRODUCTION OF INDOLE. FURTHERMORE, OBSERVING AN INCREASED GUT INNATE LYMPHOCYTE TYPE-3 CELLS (ILC3S), CONSISTENT WITH THAT OBSERVED BY OTHER GROUPS. WE HYPOTHESIZE THAT MICROBIOME CHANGES IN AS RESULT IN THE INCREASED INDOLES, WHICH THEN LEAD TO ILC3 EXPANSION. THE WORK IN THIS PROPOSAL WILL FIRST EVALUATE HOW INDOLES SIGNAL IN HUMAN ILC3S AND THEN WILL EVALUATE HOW METABOLISM OF TRYPTOPHAN LEADS TO ILC3 DEVELOPMENT AND FUNCTION IN THE MURINE GUT. SUCH FINDINGS WILL ALLOW DR KUHN TO PUBLISH THE FINDINGS OF THEIR OBSERVATIONS IN PATIENTS AS WELL AS LAY THE FOUNDATION FOR FURTHER INVESTIGATION.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.

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