SPONDYLITIS ASSOCIATION OF AMERICA: Form 990, tax year 2019

View the entire original 990 at ProPublica ↗

Organization
SPONDYLITIS ASSOCIATION OF AMERICA (EIN 95-3890767)
Tax period
2019-07-01 to 2020-06-30
Filed
2020-10-07
IRS object ID
202012819349301456
Schema version
2019v5.1
Source
Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header ReturnHeader

FieldValueIRS element (for citing)
Return2020-10-07T21:38:11-05:00ReturnTs
Tax Period End2020-06-30TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN320530003PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1QUIGLEY & MIRONBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line13550 WILSHIRE BLVD 1660AddressLine1Txt
CityLOS ANGELESCityNm
State AbbreviationCAStateAbbreviationCd
ZIP90010ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2019-07-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN953890767EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1SPONDYLITIS ASSOCIATION OF AMERICABusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlSPONBusinessNameControlTxt
Phone8188921616PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line116430 VENTURA BLVD NO 300AddressLine1Txt
CityENCINOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91436ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonCASSIE SHAFERPersonNm
Person TitleCHIEF EXECUTIVE OFFICERPersonTitleTxt
Phone8188921616PhoneNum
Signature2020-10-07SignatureDt

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonARMEN GRIGORIANPreparerPersonNm
PTINP01582463PTIN
Phone2136393550PhoneNum

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address99.88.83.161IPv4AddressTxt
FieldValueIRS element (for citing)
IP2020-10-07IPDt
IP Tm19:35:21IPTm
IP TimezonePDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id7C9F26E797FEE4F5AEDE8FB21EACB23E3B08580EAtSubmissionCreationDeviceId
At Submission Filing Device Id7C9F26E797FEE4F5AEDE8FB21EACB23E3B08580EAtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2019TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Address ChangeYes (X)AddressChangeInd
Principal OfficerCASSIE SHAFERPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line116430 VENTURA BLVD NO 300AddressLine1Txt
CityENCINOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91436ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$2,266,476GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.SPONDYLITIS.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1983FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or MissionADVANCING RESEARCH, ACCELERATED DIAGNOSIS, OPTIMUM TREATMENT, PUBLIC AWARENESS AND HEALTH CARE PROFESSIONAL EDUCATION IN SPONDYLOARTHRITISActivityOrMissionDesc
Voting Members Governing Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee13TotalEmployeeCnt
Total Volunteers115TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$1,941,665PYContributionsGrantsAmt
CY Contributions Grants$2,181,281CYContributionsGrantsAmt
PY Program Service Revenue$8,517PYProgramServiceRevenueAmt
CY Program Service Revenue$7,647CYProgramServiceRevenueAmt
PY Investment Income$77,928PYInvestmentIncomeAmt
CY Investment Income$23,359CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$2,028,110PYTotalRevenueAmt
CY Total Revenue$2,212,287CYTotalRevenueAmt
PY Grants And Similar Paid$159,994PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$121,854CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,099,229PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,167,778CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$103,271CYTotalFundraisingExpenseAmt
PY Other Expenses$845,837PYOtherExpensesAmt
CY Other Expenses$758,378CYOtherExpensesAmt
PY Total Expenses$2,105,060PYTotalExpensesAmt
CY Total Expenses$2,048,010CYTotalExpensesAmt
PY Revenues Less Expenses-$76,950PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$164,277CYRevenuesLessExpensesAmt
Total Assets BOY$3,526,569TotalAssetsBOYAmt
Total Assets EOY$4,049,261TotalAssetsEOYAmt
Total Liabilities BOY$69,711TotalLiabilitiesBOYAmt
Total Liabilities EOY$387,069TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$3,456,858NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$3,662,192NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionADVANCING AND DIRECTLY SPONSORING SPONDYLOARTHRITIS RESEARCH, ACCELERATING DIAGNOSIS, SUPPORTING OPTIMUM TREATMENT FOR THE INDIVIDUAL, ADVANCING AWARENESS, AND PUBLIC AND HEALTH CARE PROFESSIONAL EDUCATION IN SPONDYLOARTHRITIS.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$727,611ExpenseAmt
Revenue$7,647RevenueAmt
DescPATIENT 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.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$301,025ExpenseAmt
DescPHYSICIANS 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.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$228,639ExpenseAmt
Grant$121,854GrantAmt
DescSPONDYLOARTHRITIS 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.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$413,449ExpenseAmt
DescRHEUMAT 2DX PLUS AWARENESS AND SUPPORT GROUPSRHEUM 2 DX-IS THE CURRENT EFFORT TO REDUCE THE DELAYED DIAGNOSIS AND IMPROVE THE EXPERIENCE OF PEOPLE LIVING WITH NON-RADIOGRAPHIC AXIAL SPONDYLOARTHRITIS. THIS IS AN ANTICIPATED 3-YEAR PLAN/PHASE PROJECT. THE FIRST PHASE IS TO UNDERSTAND THE CURRENT SITUATION. WORKING WITH A MEMBER OF OUR MEDICAL AND SCIENTIFIC ADVISORY BOARD (MSAB), ATUL DEODHAR AND EARLY CAREER RHEUMATOLOGIST/RESEARCHER SONAM KIWALKAR, SAA IS FIRST CONDUCTING TWO TYPES OF STUDIES. THE PRIMARY OUTCOMES OF THIS PHASE WILL BE TO IDENTIFY AREAS FOR PRAGMATIC PROGRAMS TO TAKE PLACE IN YEARS TWO AND THREE, AND A PUBLICATION TO CREATE AWARENESS OF THE PROBLEM. QUALITATIVE STUDY INTERVIEWS WERE COMPLETED IN FEBRUARY 2020. ABSTRACT SUBMITTED AND ACCEPTED TO THE SPARTAN CONFERENCE, MAY 2020. THE SECOND, QUANTITATIVE STUDY, IS CURRENTLY OPEN WITH 155 COMPLETED SURVEYS. AN ABSTRACT WILL BE SUBMITTED TO ACR 2020.SOCIAL MEDIA-FACEBOOK AND TWITTER REMAIN A PRIMARY SOURCE OF EDUCATION AND AWARENESS WITH ORGANIZATIONS CONSTITUENTS. 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.TWITTER CHAT-ON THURSDAY, SEPTEMBER 26, 2019, SAA HOSTED ITS THIRD TWITTER CHAT OF 2019. THE CHAT FEATURED TWO SPECIAL GUESTS: PAIN MANAGEMENT SPECIALIST, AND NEW MSAB MEMBER, ROBERT OVERBAUGH, MD, AND DAWN M. GIBSON (@DAWNMGIBSON), FOUNDER OF SPOONIE CHAT. IN HONOR OF PAIN AWARENESS MONTH, THE CHAT FOCUSED ON LIVING WITH AND MANAGING CHRONIC PAIN, TALKING WITH HEALTH CARE PROVIDERS, TREATMENTS AND LIFESTYLE MODIFICATIONS, AND PERSONAL ADVOCACY. SPA PATIENT EDUCATIONAL WEBINAR: MIND BODY APPROACHES TO FATIGUE-ON JANUARY 25TH, SAA HELD OUR SECOND WEBINAR WITH CERTIFIED YOGA THERAPIST, NANCY O'BRIEN, CIAYT, PRESENTING ON FATIGUE. THE WEBINAR PROVIDED DISCUSSIONS ON THE CAUSES OF FATIGUE IN CHRONIC ILLNESS, AND GUIDED ATTENDEES IN MINDFUL BREATHING PRACTICES, SUPPORTED MOVEMENTS, AND A RELAXING DEEP MEDITATION. THE LIVE WEBINAR WAS ALSO RECORDED FOR ARCHIVAL AND FUTURE VIEWING. SPONDYLOARTHRITIS (SPA) AWARENESS MONTH-LAST YEAR, SAA OFFICIALLY BEGAN CELEBRATING SPA AWARENESS MONTH IN MAY. WE MADE THE SHIFT FOR SEVERAL IMPORTANT REASONS. FIRST, WORLD AS DAY OCCURS ON THE FIRST SATURDAY OF EACH MAY EXCEPT IF THE SATURDAY IS MAY 1ST. THIS CHANGE HELPED TO STRENGTHEN THE CONNECTIONS BETWEEN THE AWARENESS DAY AND THE AWARENESS MONTH. SECOND, AS A MEMBER OF ASIF, OUR INTERNATIONAL PARTNERS FOCUS THEIR EFFORTS ON CAMPAIGNS AND INITIATIVES AROUND WORLD AS DAY AND THE MONTH OF MAY. BY ALIGNING OUR EFFORTS WITH THE REST OF THESE INTERNATIONAL ORGANIZATIONS, WE HAVE BEEN ABLE TO PROVIDE A MORE COLLABORATIVE AND COORDINATED EFFORT TO RAISE AWARENESS OF THE DISEASE.WEBSITE MIGRATION PROJECT-SAA'S NEW WEBSITE OFFICIALLY LAUNCHED MARCH 2020. THE NEW WEBSITE HAS BEEN DESIGNED TO DELIVER A BETTER USER EXPERIENCE ON MULTIPLE LEVELS. THIS INCLUDES REORGANIZING THE CONTENT TO BE MORE INTUITIVE FOR USERS CONDUCTING SEARCHES FOR TOPICS; PROVIDING RELATED RESOURCES AND RECOMMENDATIONS DIRECTLY ON PAGES TO HELP USERS ENGAGE WITH MORE CONTENT; TOOLS TO SHARE ARTICLES AND CONTENT FROM PAGES TO A USER'S SOCIAL ACCOUNTS; AND AN OVERALL BOOST TO OUR BRAND IMAGE WITH A MORE PROFESSIONAL VISUAL REPRESENTATION OF OUR ORGANIZATION AND OFFERINGS. MANY WITHIN OUR COMMUNITY DEPEND ON THE INFORMATION ON OUR WEBSITE TO HELP MAKE BETTER INFORMED DECISIONS ABOUT THEIR HEALTH AS WELL AS STAY CONNECTED TO THE LATEST UPDATES ON RESEARCH, TREATMENT OPTIONS, AND FIND SUPPORT. ADVOCACY-AS AN ADVOCATE FOR PEOPLE LIVING WITH SPONDYLOARTHRITIS, THE ORGANIZATION STRIVES TO INCREASE PUBLIC AWARENESS, IMPROVE ACCESS TO HEALTH CARE, INCREASE FEDERAL RESEARCH FUNDING TO CURE SPONDYLITIS, AND INFLUENCE PUBLIC POLICIES THAT IMPACT THE SPONDYLITIS COMMUNITY. WITH CAMPAIGNS ENCOURAGING MEDICARE PART D TO LOWER PRESCRIPTION COSTS AND WAIVING RESTRICTIONS FOR EARLY PRESCRIPTION REFILLS AND COPAY FOR CORONAVIRUS TESTING TO STEP THERAPY - UTILIZATION MANAGEMENT REFORM AND GRANTING ACCESS TO ALL FOR THE CORONAVIRUS VACCINE, SAA HAS BEEN ACTIVE WITH THESE AND SEVERAL OTHER ADVOCACY INITIATIVES THROUGHOUT THE YEAR.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$413,449TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$1,670,724TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document11IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee13EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members12GoverningBodyVotingMembersCnt
Independent Voting Member12IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Other WebsiteYes (X)OtherWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1CASSIE SHAFERBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone8188921616PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line116430 VENTURA BLVD SUITE 300AddressLine1Txt
CityENCINOCityNm
State AbbreviationCAStateAbbreviationCd
ZIP91436ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (15 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
ELLEN CARROLL
SECRETARY2.00Yes (X)Yes (X)$0$0$0
CRAIG GIMBEL
DIRECTOR1.00Yes (X)$0$0$0
ERIC GOLDSTEIN
VICE CHAIR, TREASURER2.00Yes (X)Yes (X)$0$0$0
DAVID HALLEGUA
DIRECTOR1.00Yes (X)$0$0$0
ARNOLD M PODOLSKY
DIRECTOR1.00Yes (X)$0$0$0
MARY ANN POLADIAN
DIRECTOR1.00Yes (X)$0$0$0
PAULA OLSIEWSKI
VICE CHAIR2.00Yes (X)Yes (X)$0$0$0
MICHAEL PIANIN
BOARD CHAIR2.00Yes (X)Yes (X)$0$0$0
RANDALL SAPADIN
DIRECTOR1.00Yes (X)$0$0$0
JOHN D REVEILLE
DIRECTOR1.00Yes (X)$0$0$0
JAMES ROSENBAUM
DIRECTOR1.00Yes (X)$0$0$0
MICHAEL H WEISMAN
DIRECTOR1.00Yes (X)$0$0$0
CASSIE SHAFER
CHIEF EXECUTIVE OFFICER40.00Yes (X)$189,454$0$6,438
DIANN PETERSON
CHIEF PHILANTHROPY OFFICER40.00$106,424$0$3,264Yes (X)
RICHARD HOWARD
CHIEF MISSION ADVANCEMENT OFFICER40.00$110,471$0$3,312Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$406,349TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$13,014TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K3IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
All Other Contributions$2,181,281AllOtherContributionsAmt
Total Contributions$2,181,281TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescPUBLICATION SALESDesc
Business611710BusinessCd
Total Revenue Column$7,647TotalRevenueColumnAmt
Related Or Exempt Func Income$7,647RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$7,647TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$65,844TotalRevenueColumnAmt
Exclusion$65,844ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$11,704SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$1,516SecuritiesAmt
Other$52,673OtherAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$10,188SecuritiesAmt
Other-$52,673OtherAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$42,485TotalRevenueColumnAmt
Exclusion-$42,485ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$2,212,287TotalRevenueColumnAmt
Related Or Exempt Func Income$7,647RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$23,359ExclusionAmt
FieldValueIRS element (for citing)
Info In Schedule O Part IXYes (X)InfoInScheduleOPartIXInd

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$121,854TotalAmt
Program Services$121,854ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$199,214TotalAmt
Program Services$159,370ProgramServicesAmt
Management And General$19,922ManagementAndGeneralAmt
Fundraising$19,922FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$803,198TotalAmt
Program Services$654,558ProgramServicesAmt
Management And General$97,442ManagementAndGeneralAmt
Fundraising$51,198FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$19,895TotalAmt
Program Services$16,169ProgramServicesAmt
Management And General$2,494ManagementAndGeneralAmt
Fundraising$1,232FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$72,774TotalAmt
Program Services$59,090ProgramServicesAmt
Management And General$8,523ManagementAndGeneralAmt
Fundraising$5,161FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$72,697TotalAmt
Program Services$57,723ProgramServicesAmt
Management And General$9,337ManagementAndGeneralAmt
Fundraising$5,637FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$65,430TotalAmt
Management And General$65,430ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$226,230TotalAmt
Program Services$226,230ProgramServicesAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$219,661TotalAmt
Program Services$167,858ProgramServicesAmt
Management And General$46,881ManagementAndGeneralAmt
Fundraising$4,922FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$24,365TotalAmt
Program Services$23,163ProgramServicesAmt
Management And General$696ManagementAndGeneralAmt
Fundraising$506FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$87,311TotalAmt
Program Services$61,118ProgramServicesAmt
Management And General$17,462ManagementAndGeneralAmt
Fundraising$8,731FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$47,638TotalAmt
Program Services$40,516ProgramServicesAmt
Management And General$3,228ManagementAndGeneralAmt
Fundraising$3,894FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$62,411TotalAmt
Program Services$61,593ProgramServicesAmt
Fundraising$818FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$19,625TotalAmt
Program Services$15,775ProgramServicesAmt
Management And General$2,600ManagementAndGeneralAmt
Fundraising$1,250FundraisingAmt

Other Expenses OtherExpensesGrp

FieldValueIRS element (for citing)
DescSTATE LICENSINGDesc
Total$5,707TotalAmt
Program Services$5,707ProgramServicesAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$2,048,010TotalAmt
Program Services$1,670,724ProgramServicesAmt
Management And General$274,015ManagementAndGeneralAmt
Fundraising$103,271FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$438,692BOYAmt
EOY$636,894EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$2,592,887BOYAmt
EOY$2,833,300EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$131,743BOYAmt
EOY$207,518EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$9,491BOYAmt
EOY$9,821EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$60,734LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$48,013LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$14,555BOYAmt
EOY$12,721EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$271,087BOYAmt
EOY$274,524EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$62,673BOYAmt
EOY$69,042EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$5,441BOYAmt
EOY$5,441EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$3,526,569BOYAmt
EOY$4,049,261EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$69,711BOYAmt
EOY$181,169EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$205,900EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$69,711BOYAmt
EOY$387,069EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$2,793,479BOYAmt
EOY$2,528,016EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$663,379BOYAmt
EOY$1,134,176EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,456,858BOYAmt
EOY$3,662,192EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$3,526,569BOYAmt
EOY$4,049,261EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$164,277ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$41,057NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,334,632CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,666,271CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,652,738CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,941,665CurrentTaxYearMinus1YearAmt
Current Tax Year$2,181,281CurrentTaxYearAmt
Total$8,776,587TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$1,334,632CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$1,666,271CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$1,652,738CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,941,665CurrentTaxYearMinus1YearAmt
Current Tax Year$2,181,281CurrentTaxYearAmt
Total$8,776,587TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$3,303,650SubstantialContributorsTotAmt
Public Support Total170$5,472,937PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$24,573CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$25,145CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$35,065CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$68,076CurrentTaxYearMinus1YearAmt
Current Tax Year$65,844CurrentTaxYearAmt
Total$218,703TotalAmt
FieldValueIRS element (for citing)
Total Support$8,995,290TotalSupportAmt
Gross Receipts Rltd Activities$36,208GrossReceiptsRltdActivitiesAmt
Public Support CY1700.60840PublicSupportCY170Pct
Public Support PY1700.62920PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

FieldValueIRS element (for citing)
Form And Line ReferenceSCHEDULE A, PART VI, LIST OF UNUSUAL GRANTS:FormAndLineReferenceDesc
ExplanationDESCRIPTION: CONTRIBUTION DATE: 06/30/18 AMOUNT: 982773. DESCRIPTION: BEQUEST DATE: 06/30/15 AMOUNT: 381349.ExplanationTxt

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$49,085OtherCostOrOtherBasisAmt
Depreciation$39,321DepreciationAmt
Book Value$9,764BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$11,649OtherCostOrOtherBasisAmt
Depreciation$8,692DepreciationAmt
Book Value$2,957BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$12,721TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescPPP ADVANCEDesc
Amt$205,900Amt
FieldValueIRS element (for citing)
Total Liability$205,900TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$2,253,344TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$41,057NetUnrealizedGainsInvstAmt
Revenue Not Reported$41,057RevenueNotReportedAmt
Revenue Subtotal$2,212,287RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$2,212,287TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$2,048,010TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$2,048,010ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$2,048,010TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART X, LINE 2:FormAndLineReferenceDesc
ExplanationACCOUNTING 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, 2020. 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

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (4 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL
AS6-1077 368 PLANTATION STWORCESTERMA01605043167352501(C)(3)$20,000EARLY INVESTIGATOR AWARD (JBRF)
YALE UNIVERSITY
300 CEDAR ST TACS - 525NEW HAVENCT06520060646652501(C)(3)$20,000EARLY INVESTIGATOR AWARD (JBRF)
CHILDREN'S HOSPITAL OF PHILADELPHIA
3615 CIVIC CENTER BLVD ARC 142DPHILADELPHIAPA19104232237932501(C)(3)$31,854PEDIATRIC AXIAL CRITERIA
UNIVERSITY OF COLORADO
1775 AURORA COURT ROOM 3102 CAMPUSAURORACO80045846049811501(C)(3)$50,000MICROBIOME OF OFFSPRING IN ANKYLOSING SPONDYLITISBOX B115
FieldValueIRS element (for citing)
Total501c3 Org4Total501c3OrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationRESEARCHERS 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.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp

FieldValueIRS element (for citing)
PersonCASSIE SHAFERPersonNm
TitleCHIEF EXECUTIVE OFFICERTitleTxt
Base Compensation Filing Org$189,454BaseCompensationFilingOrgAmt
Compensation Based On Rltd Orgs$0CompensationBasedOnRltdOrgsAmt
Bonus Filing Organization$0BonusFilingOrganizationAmount
Bonus Related Organizations$0BonusRelatedOrganizationsAmt
Other Compensation Filing Org$0OtherCompensationFilingOrgAmt
Other Compensation Rltd Orgs$0OtherCompensationRltdOrgsAmt
Deferred Compensation Flng Org$5,229DeferredCompensationFlngOrgAmt
Deferred Comp Rltd Orgs$0DeferredCompRltdOrgsAmt
Nontaxable Benefits Filing Org$1,209NontaxableBenefitsFilingOrgAmt
Nontaxable Benefits Rltd Orgs$0NontaxableBenefitsRltdOrgsAmt
Total Compensation Filing Org$195,892TotalCompensationFilingOrgAmt
Total Compensation Rltd Orgs$0TotalCompensationRltdOrgsAmt
Comp Report Prior990 Filing Org$0CompReportPrior990FilingOrgAmt
Comp Report Prior990 Rltd Orgs$0CompReportPrior990RltdOrgsAmt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (6 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BTHE AUDIT COMMITTEE REVIEWS THE DOCUMENT PRIOR TO ITS DISTRIBUTION TO THE ENTIRE BOARD FOR REVIEW.
FORM 990, PART VI, SECTION B, LINE 12CALL 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 15THE 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 19THE ORGANIZATION PRODUCES AN ANNUAL REPORT THAT IS PUBLISHED ON ITS WEBSITE
FORM 990, PART IX, LINE 11GPROFESSIONAL SERVICES: PROGRAM SERVICE EXPENSES 226,230. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 226,230.
FORM 990, PART XII, LINE 2CTHE 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.

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