SPONDYLITIS ASSOCIATION OF AMERICA

Financials

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended June 30, 2026, highest compensation first.

Address and contacts

Address (IRS master file)

16430 VENTURA BLVD STE 300, ENCINO, CA 91436-2141

Principal officer (990 for 2025)

CASSIE SHAFER, 16430 VENTURA BLVD 300, ENCINO, CA 91436

Signed the 990

CASSIE SHAFER, CHIEF EXECUTIVE OFFICER

Phone

(818) 892-1616

Website

WWW.SPONDYLITIS.ORG

Return prepared by

QUIGLEY & MIRON

California records

California keeps its own records of charities and corporations. Search them by EIN 95-3890767 or by the name SPONDYLITIS ASSOCIATION OF AMERICA.

Attorney General, Registry of Charities and Fundraisers

Registration status and filed reports (CT-TR-1, RRF-1)

Secretary of State, bizfile Online

Corporation status, entity number, agent for service

Franchise Tax Board

Entity status letter (state tax exemption, good standing)

Mission

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.

Program accomplishments

• SAA DELIVERS PATIENT EDUCATION, DISEASE AWARENESS, AND SUPPORT SERVICES THROUGH AN INTEGRATED DIGITAL PLATFORM THAT INCLUDES VIRTUAL SEMINARS, WEBINARS, EDUCATIONAL CONTENT, ONLINE PUBLICATIONS, AND PATIENT SUPPORT RESOURCES. AT THE CENTER OF THESE EFFORTS IS WWW.SPONDYLITIS.ORG, A COMPREHENSIVE ONLINE RESOURCE FEATURING THOUSANDS OF PAGES OF PHYSICIAN-REVIEWED INFORMATION AND SERVING OVER 705,000 UNIQUE VISITORS ANNUALLY.GLOBAL SPONDYLOARTHRITIS SUMMIT 2026 SAAS SIGNATURE ONLINE EDUCATIONAL PROGRAM, 8THANNUAL GLOBAL SPONDYLOARTHRITIS SUMMIT, TOOK PLACE MAY 1-2. THIS YEAR'S SUMMIT FEATURED 12 PRESENTATIONS BY SUBJECT MATTER EXPERTS ON PRACTICAL STRATEGIES TO ADDRESS EVERYDAY CHALLENGES WHILE LIVING WITH SPA. EACH PRESENTATION FOLLOWED BY A LIVE Q&A FOR ATTENDEES TO HAVE THEIR MOST PRESSING QUESTIONS ANSWERED. THE SUMMIT ALSO FEATURED A LEADERBOARD CHALLENGE, AN ACTIVITY LOUNGE AND AN EXHIBIT HALL. SAA ALSO PROVIDED SPANISH LANGUAGE SUBTITLES FOR THE PRESENTATIONS. NEARLY 3,000 ATTENDEES FROM 75 COUNTRIES REGISTERED FOR THIS YEAR'S EVENT. RECORDINGS OF THE PRESENTATIONS ARE AVAILABLE AS ENDURING CONTENT ON SAA'S WEBSITE. HEALTHED LIVESTREAM - IN FYE 2026, SAA DEVELOPED AND LAUNCHED A NEW HEALTHED LIVESTREAM PROGRAM, IS IT JUST BACK PAINOR SOMETHING MORE?, HELD LIVE ON FEBRUARY 21, 2026 AND WAS DESIGNED TO REACH PEOPLE EXPERIENCING CHRONIC BACK PAIN WHO MAY NOT YET HAVE A SPONDYLOARTHRITIS DIAGNOSIS. OUR HEALTHED LIVESTREAM PROVIDED EXPERT EDUCATION ON THE COMMON CAUSES OF CHRONIC BACK PAIN, DIFFERENCES BETWEEN INFLAMMATORY AND MECHANICAL BACK PAIN, THE DIAGNOSTIC PROCESS, AND HOW INDIVIDUALS CAN ADVOCATE FOR APPROPRIATE EVALUATION AND CARE. THE PROGRAM WAS LAUNCHED IN CONJUNCTION WITH THE ROLLOUT OF THE A-TOOL, AN AXIAL SPONDYLOARTHRITIS SCREENING ASSESSMENT DEVELOPED BY ABHIJEET DANVE, MD, OF YALE SCHOOL OF MEDICINE. SAA COLLABORATED WITH DR. DANVE TO MAKE THE A-TOOL AVAILABLE THROUGH SAA'S WEBSITE, PROVIDING PEOPLE WITH CHRONIC BACK PAIN AN ACCESSIBLE WAY TO IDENTIFY SYMPTOMS THAT MAY WARRANT FURTHER MEDICAL EVALUATION. THE LIVESTREAM WAS BROADCAST ACROSS MULTIPLE SOCIAL MEDIA PLATFORMS INCLUDING YOUTUBE, FACEBOOK, INSTAGRAM, AND X AND WAS MADE AVAILABLE AFTERWARD AS ENDURING EDUCATIONAL CONTENT, CREATING A PATHWAY FROM BACK PAIN AWARENESS TO SCREENING AND POTENTIAL MEDICAL EVALUATION. THE PROGRAM WAS SUPPORTED BY AN EDUCATIONAL GRANT FROM ABBVIE.PATIENT EDUCATION PUBLICATIONS INCLUDE A COLLECTION OF 15 PHYSICIAN-VETTED ENGLISH-LANGUAGE SPONDYLOARTHRITIS EDUCATIONAL BROCHURES AND 10 SPANISH-LANGUAGE BROCHURES. IN FY26, THE PROGRAM WAS EXPANDED WITH THE ADDITION OF THREE NEW EDUCATIONAL BROCHURES FOCUSED ON PSORIATIC ARTHRITIS, ENTEROPATHIC ARTHRITIS, AND HIDRADENITIS SUPPURATIVA, ADDRESSING IDENTIFIED GAPS IN PATIENT EDUCATION RESOURCES.SPONDYLITIS PLUS MAGAZINE SAA MEMBERS RECEIVE QUARTERLY ISSUES OF THE ORGANIZATION'S PREMIERE PRINT PUBLICATION. SPONDYLITIS PLUS PROVIDES INDEPTH 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.ESUN SAA REDESIGNED ITS ELECTRONIC SPONDYLOARTHRITIS UPDATE NEWSLETTER, TRANSITIONING FROM A SINGLE MONTHLY PUBLICATION TO TWO ISSUES PER MONTH. THIS ENHANCED COMMUNICATION MODEL ALLOWS SAA TO DELIVER MORE TIMELY NEWS, RESEARCH OPPORTUNITIES, UPCOMING PROGRAMS AND EVENTS, PATIENT STORIES, AND OTHER SPONDYLOARTHRITIS-RELATED RESOURCES TO ALMOST 50,000 SUBSCRIBERS.SPONDYCAST PODCAST SERIES SAA LAUNCHED A NEW WEEKLY PODCAST CALLED SPONDYCAST IN MARCH 2023, WITH A TOTAL OF 137 PODCASTS PRODUCED BY FYE26. BOARD MEMBER AND HOST JILL MILLER INTERVIEWS WORLD-RENOWNED SPECIALISTS IN VARIOUS FIELDS INCLUDING MEDICINE, PSYCHOLOGY, DIET AND NUTRITION, AND FITNESS. SPONDYCAST IS AVAILABLE ON A VARIETY OF PLATFORMS INCLUDING SPOTIFY, APPLE, IHEART RADIO, PANDORA, AMAZON MUSIC, AND MORE. DURING FYE26, SAA DEVELOPED PSORIATIC ARTHRITIS EXPLAINED, A NEW 10-EPISODE SPECIAL SERIES OF SPONDYCAST SUPPORTED BY NOVARTIS. THE SERIES PROVIDES ACCESSIBLE, EVIDENCE-BASED EDUCATION ON PSORIATIC ARTHRITIS (PSA) THROUGH CONVERSATIONS WITH LEADING HEALTHCARE EXPERTS AND PEOPLE LIVING WITH PSA. TOPICS INCLUDE SYMPTOMS AND DIAGNOSIS, TREATMENT ADVANCES, EXERCISE, EMOTIONAL WELL-BEING, ASSOCIATED HEALTH CONDITIONS, SEX AND GENDER DIFFERENCES, PATIENT-REPORTED OUTCOMES, INTIMACY AND SEXUAL HEALTH, THE GUT MICROBIOME, AND PERSONAL EXPERIENCES OF LIVING WITH PSA. THE SERIES LAUNCHED IN AUGUST 2026 IN RECOGNITION OF PSORIASIS AWARENESS MONTH, WITH NEW EPISODES RELEASED WEEKLY AND SUPPORTED BY A DEDICATED ONLINE RESOURCE PAGE FEATURING THE SERIES AND ADDITIONAL PSA EDUCATION."LIFE AFTER DIAGNOSIS" VIDEO SERIESTHIS PATIENT-FOCUSED EDUCATIONAL PROGRAM ADDRESSES 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. OVER 2,500 PARTICIPANTS HAVE ENROLLED IN THIS PROGRAM. NEXTGEN STORIES - SAA LAUNCHED NEXTGEN STORIES: LIVING WITH SPONDYLOARTHRITIS, A DISEASE AWARENESS INITIATIVE DESIGNED TO REACH AND ENGAGE GEN Z AND MILLENNIAL ADULTS LIVING WITH SPA. THE PROGRAM ENGAGES YOUNG ADULT CONTENT CREATORS WITH SPA TO SHARE AUTHENTIC LIVED EXPERIENCES THROUGH SHORT-FORM VIDEOS ON SOCIAL MEDIA PLATFORMS, INCLUDING FACEBOOK, INSTAGRAM, TIKTOK, AND YOUTUBE. CONTENT FOCUSES ON ISSUES RELEVANT TO YOUNGER ADULTS, INCLUDING DIAGNOSIS, MENTAL HEALTH, RELATIONSHIPS, SCHOOL AND WORK, FITNESS, SELF-ADVOCACY, AND NAVIGATING LIFE WITH A CHRONIC CONDITION. BY COMBINING PEER-LED STORYTELLING WITH ACCESS TO SAA'S TRUSTED EDUCATIONAL RESOURCES, NEXTGEN STORIES AIMS TO INCREASE SPA AWARENESS, REDUCE ISOLATION, STRENGTHEN SELF-ADVOCACY, AND EXPAND SAA'S REACH AMONG YOUNGER AUDIENCES.SAA'S SUPPORT GROUPS FROM JULY 1, 2025, TO JUNE 30, 2026, 30 ACTIVE SUPPORT GROUP LEADERS CONDUCTED A TOTAL OF 249 SUPPORT GROUP MEETINGS. OUR SUPPORT GROUPS SPANNED 19 STATES AND 1 FEDERAL DISTRICT (WASHINGTON, DC), ENSURING WIDESPREAD REACH AND ACCESSIBILITY FOR OUR COMMUNITY MEMBERS. MEETINGS WERE OFFERED IN VARIOUS FORMATS, INCLUDING ONLINE, IN-PERSON, AND HYBRID, TO ACCOMMODATE THE DIVERSE NEEDS OF ATTENDEES. 4 NEW SUPPORT GROUP LEADERS (PHILADELPHIA, SPANISH SPEAKERS, BOSTON) WERE WELCOMED. OUR NEW "SPANISH SPEAKER SUPPORT GROUP" WELCOMES INTERNATIONAL ATTENDEES FROM VARIOUS LATIN AMERICAN COUNTRIES. ALSO NEW IS "CAREGIVING WITH SPA SUPPORT GROUP" THESE MEETINGS OFFER EDUCATION, ENCOURAGEMENT, EMOTIONAL SUPPORT, AND ALLOW FOR OPEN DISCUSSION ABOUT MANAGING AND LIVING WITH SPONDYLOARTHRITIS, ATTENDEES JOIN FROM AROUND THE WORLD. WE HELD 12 SOCIAL CHAT HOURS, PROVIDING AN INFORMAL PLATFORM FOR SUPPORT GROUP LEADERS TO CONNECT, SHARE EXPERIENCES, AND OFFER MUTUAL SUPPORT OUTSIDE THE MORE STRUCTURED SUPPORT GROUP MEETINGS. FOUR QUARTERLY CHECK-INS WERE HELD, ALLOWING US TO PROVIDE PROFESSIONAL DEVELOPMENT AND GATHER FEEDBACK FROM SUPPORT GROUP LEADERS, ASSESS THE EFFECTIVENESS OF OUR PROGRAMS, AND MAKE NECESSARY ADJUSTMENTS TO BETTER SERVE OUR COMMUNITY.OUR "MEETINGS WITHOUT BORDERS" INITIATIVE CONTINUES TO GROW, WITH 387 INDIVIDUALS REGISTERED TO RECEIVE ALERTS ABOUT UPCOMING MEETINGS. THIS PROGRAM ALLOWS CONSTITUENTS TO JOIN MEETINGS BEYOND THEIR LOCAL AREA, FOSTERING A BROADER SENSE OF COMMUNITY AND SUPPORT. SUPPORT GROUP LEADERS HAVE REPORTED THAT THEY HAVE SEEN MEETING ATTENDEES JOINING THEIR SUPPORT GROUP MEETINGS FROM LOCATIONS OUTSIDE OF THEIR LOCAL AREA/STATE.
  Expenses $953,760 · revenue $3,617
• EARLY CAREER INVESTIGATOR AWARDS (ECI)TWO OF THESE PRESTIGIOUS JANE BRUCKEL EARLY CAREER INVESTIGATOR AWARDS WERE PUBLICLY PRESENTED DURING THE AMERICAN COLLEGE OF RHEUMATOLOGY ANNUAL CONFERENCE THIS FISCAL YEAR. EACH RECEIVED $30,000 TO CONDUCT SPONDYLOARTHRITIS RESEARCH THIS YEAR. -DR. PARAS KARMACHARYA, MD, MS, ASSISTANT PROFESSOR OF MEDICINE IN THE DIVISION OF RHEUMATOLOGY AND IMMUNOLOGY AT VANDERBILT UNIVERSITY MEDICAL CENTER.DURING HIS INTERNAL MEDICINE RESIDENCY, DR. KARMACHARYA FOCUSED ON CLINICAL RESEARCH AND EPIDEMIOLOGICAL STUDIES USING NATIONAL DATABASES. AS A RHEUMATOLOGY FELLOW AT MAYO CLINIC, HE INVESTIGATED THE EPIDEMIOLOGY OF PSORIATIC ARTHRITIS (PSA) AND THE COMORBIDITIES ASSOCIATED WITH SPA. HIS RESEARCH HAS BEEN PUBLISHED IN LEADING RHEUMATOLOGY JOURNALS, INCLUDING ANNALS OF THE RHEUMATIC DISEASES, ARTHRITIS CARE & RESEARCH, AND ACR OPEN RHEUMATOLOGY. IN RECOGNITION OF HIS CONTRIBUTIONS, HE RECEIVED THE 2020 PHILIP S. HENCH AWARD FOR EXCELLENCE AS A SUBSPECIALTY FELLOW IN RHEUMATOLOGY.- DR. RACHAEL STOVALL, MD, MAS, IS AN ACTING ASSISTANT PROFESSOR I THE DIVISION OF RHEUMATOLOGY AT THE UNIVERSITY OF WASHINGTON, SPECIALIZING IN AXIAL SPONDYLOARTHRITIS (AXSPA). DR. STOVALL COMPLETED A RESEARCH-FOCUSED RHEUMATOLOGY FELLOWSHIP AT THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO (UCSF), WHERE SHE ALSO EARNED A MASTER OF ADVANCED STUDIES IN CLINICAL AND EPIDEMIOLOGICAL RESEARCH. HER RESEARCH BEGAN DURING HER INTERNAL MEDICINE RESIDENCY AT BOSTON UNIVERSITY MEDICAL CENTER, WHERE SHE STUDIED THE IMPACT OF TUMOR NECROSIS FACTOR INHIBITORS AND OTHER THERAPIES ON SPA PATIENTS. HER FINDINGS ON FRACTURE RISK, OPIOID USE, AND SEX DIFFERENCES IN FUNCTIONAL OUTCOMES IN AXSPA HAVE BEEN PUBLISHED IN ARTHRITIS CARE & RESEARCH AND NATURE REVIEWS RHEUMATOLOGY.IN ADDITION TO FUNDING ECI AWARDS, SAA RECEIVES FUNDING REQUESTS FROM OUTSIDE SOURCES TO SUPPORT RESEARCH RELATED TO SPONDYLOARTHRITIS. THE ORGANIZATION CONSIDERS IT IMPERATIVE THAT ANY RESEARCH PROPOSALS MAKE OPTIMAL USE OF THESE LIMITED RESOURCES. THE FOLLOWING SAA FUNDED RESEARCH GRANTS WERE CONDUCTED DURING THIS FISCAL YEAR: JOERG ERMANN, MD AT THE BRIGHAM AND WOMEN'S HOSPITAL HARVARD MEDICAL SCHOOL. STUDY ""DECODING AXIAL SPONDYLOARTHRITIS THROUGH TISSUE ANALYSIS." KRISTINE KUHN, MD, PHD AT THE UNIVERSITY OF COLORADO ANSCHUTZ MEDICAL CAMPUS. STUDY ""LICENSING OF GUT-TRAFFICKED T CELLS BY EPITHELIAL MHC CLASS II." SUSAN MURPHY, SCD OTR AT THE UNIVERSITY OF MICHIGAN HEALTH SYSTEM. STUDY "RENEW SPONDYLOARTHRITIS:FEASIBILITY, ACCEPTABILITY, AND PRELIMINARY EFFICACY OF A PEER HEALTH COACHED RESILIENCE-BUILDING ENERGYMANAGEMENT INTERVENTION TO ENHANCE WELLBEING AND FATIGUE."
  Expenses $738,637 · grants $668,476
• OTHER PROGRAM SERVICESSOCIAL MEDIA OUR SOCIAL MEDIA CHANNELS (FACEBOOK, TWITTER, INSTAGRAM, AND LINKEDIN) ARE ESSENTIAL TOOLS FOR INCREASING AWARENESS AND ENGAGING WITH SAA'S CONSTITUENTS. DURING THE FISCAL YEAR ENDING JUNE 30, 2026, OUR SOCIAL MEDIA CHANNELS EARNED 2,062,916 IMPRESSIONS, 39,068 ENGAGEMENTS (LIKES, SHARES, COMMENTS) AND 11,867 POST LINK CLICKS. FACEBOOK ACCOUNTED FOR 1,726,069 IMPRESSIONS; INSTAGRAM ACCOUNTED FOR 272,968, TWITTER ACCOUNTED FOR 33,317, LINKEDIN ACCOUNTED FOR 29,366 AND TIKTOK ACCOUNTED FOR 1,196.YOUTUBE AS A VIDEO SHARING PLATFORM, YOUTUBE ALSO SERVES AS A SEARCH ENGINE. IN FACT, YOUTUBE IS THE SECOND MOST POPULAR SEARCH ENGINE IN THE WORLD WITH ONLY GOOGLE SURPASSING IT. DURING THE FISCAL YEAR ENDING JUNE 30, 2026, THERE WERE 54.4K VIEWS AND 676.6K IMPRESSIONS OF VIDEO CONTENT ON OUR YOUTUBE CHANNEL.SAA WEBSITE DURING THE FISCAL YEAR ENDING JUNE 30, 2026, SAA WEBSITE HAD 781,181 PAGE VIEWS AND 333,740 UNIQUE USERS. IN TERMS OF DEMOGRAPHICS, 58 PERCENT OF WEBSITE VISITORS ARE FEMALE, AND 42 PERCENT ARE MALE. THE AGE GROUPS WERE 18-24 (10,128), 25-34 (15,784), 35-44 (13,567), AND 45 54 (11,680), 55-64 (9,907), AND 65+ (6,478).COMMUNITY FORUM - 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. TO DATE, THERE ARE 21,941 MEMBERS PARTICIPATING IN 255,148 POSTS/DISCUSSIONS.SAA STORYTELLERS, YOUR STORIES ON STAGESAA STORYTELLERS, YOUR STORIES ON STAGE IS A VIRTUAL COMMUNITY STORYTELLING SHOW THAT IS AN EXTENSION OF THE STORIES FEATURED IN OUR QUARTERLY NEWSMAGAZINE, SPONDYLITIS PLUS. PATIENTS JOIN THE PRESENTATION BROADCAST ON YOUTUBE AND CONNECT VIA POSITIVE COMMENTS AND GOODWILL. THIS VIRTUAL SHOW FEATURES FOUR STORYTELLERS SHARING THEIR JOURNEYS LIVING WITH ANKYLOSING SPONDYLITIS AND RELATED DISEASES OR CARING FOR SOMEONE LIVING WITH THE DISEASE. THIS MISSION OF THIS PROJECT IS TO BUILD EMPATHY AND CONNECTION THROUGH THE POWER OF STORY. THIS SEASON'S SHOWS WERE PRESENTED WITH SUPPORT FROM BMS, TOTAL VIEWS FOR SHOWS PRESENTED IN DECEMBER, FEBRUARY, APRIL, AND JUNE WERE ALMOST 2,000. WALK YOUR AS OFF (WYASO) SAA'S VIRTUAL WALK IS A YEAR-ROUND CAMPAIGN TO ENCOURAGE PEOPLE TO "FIND THEIR HAPPY PACE AND KEEP MOVING. THIS INTERNATIONAL EFFORT HAS GROWN INTO A MUCH-BELOVED EVENT THAT BRINGS PEOPLE TOGETHER AND ENCOURAGES HEALTHY ACTIVITIES. SUNDAY, MAY 3, 2026, WAS A SPECIAL WALK YOUR AS OFF DAY, NEW FOR THIS YEAR. THE ADDITION OF WALK YOUR AS OFF DAY WITH A VIRTUAL COMPONENT, INCREASED FUNDRAISING, ENGAGEMENT, AND OVERALL EXERCISE. SPONDYLITIS PATIENTS FROM AROUND THE WORLD CHECKED IN TO SAY HI AND SHARED MOTIVATING COMMENTS. SPONDYLOARTHRITIS (SPA) AWARENESS MONTHSPONDYLOARTHRITIS (SPA) AWARENESS MONTH WAS CELEBRATED MAY 2026. RAISING AWARENESS DURING MAY AND THROUGHOUT THE YEAR HELPS INCREASE VISIBILITY OF SPA. 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 2026 WAS "WE MOVE DIFFERENTLY WITH SPONDYLOARTHRITIS." THE CAMPAIGN SHONE A LIGHT ON HOW PEOPLE LIVING WITH SPA ADAPT, PERSIST, AND NAVIGATE DAILY LIFE.BASDAI CALCULATOR THE BATH ANKYLOSING SPONDYLITIS DISEASE ACTIVITY INDEX (BASDAI) IS A SELF-ADMINISTERED QUESTIONNAIRE THAT CONTAINS SIX QUESTIONS REGARDING SUBJECTIVE SYMPTOMS DURING THE WEEK PRIOR TO ANSWERING THE QUESTIONS. AN INTERACTIVE BASDAI WAS LAUNCHED ON SAA'S WEBSITE IN JANUARY 2024. THUS FAR, THERE HAVE BEEN 37,042 COMPLETIONS.ADVOCACYSAA'S ADVOCACY PROGRAM CONTINUES TO EXPAND BOTH IN THE NUMBER OF INITIATIVES AND ACTIONS TAKEN, AS WELL AS THE NUMBER OF SPONDYLITIS COMMUNITY ADVOCATES. ADVOCACY PLANS ARE GUIDED BY STRATEGIC PRIORITIES, INCLUDING INCREASING PUBLIC AWARENESS, IMPROVING ACCESS TO HEALTHCARE, INCREASING FEDERAL RESEARCH FUNDING TO FIND A CURE FOR SPONDYLITIS, AND INFLUENCING PUBLIC POLICIES THAT AFFECT THE SPONDYLITIS COMMUNITY. ADVOCACY SPECIFIC ACTIONS ARE GUIDED WITH THE INPUT FROM THE ADVOCACY ADVISORY COMMITTEE WHICH IS MADE UP OF PATIENTS, LOVED ONES, AND PHYSICIANS. SAA ADVOCACY EFFORTS AIM TO CREATE POSITIVE CHANGE FOR AND WITHIN THE SPONDYLITIS COMMUNITY THROUGH STATE AND NATIONAL CAMPAIGNS. THESE EFFORTS UTILIZE A MULTICHANNEL APPROACH TO REACH POTENTIAL ADVOCATES AND TARGETED LEGISLATORS WHERE THEY ARE, WHETHER ON SOCIAL MEDIA, EMAIL, WEBSITES, PODCASTS, NEWSPAPERS, OR SAA PUBLICATIONS. ADVOCATES ARE ENCOURAGED TO PARTICIPATE THROUGH SURVEYS, PETITIONS, POLLS, LETTER-WRITING CAMPAIGNS, LETTERS, AND EMAILS TO SPECIFIC LEGISLATORS, AS WELL AS, WHEN POSSIBLE, IN-PERSON CONVERSATIONS WITH STATE, LOCAL, AND NATIONAL LEGISLATORS. SAA AMPLIFIES THE IMPACT AS AN ACTIVE PARTICIPANT IN 42 MEETINGS WITH COALITIONS OF OTHER PATIENT-CENTRIC NON-PROFIT ORGANIZATIONS. SPECIFIC ACTIVITIES INCLUDE ARTICLES IN SPONDYLITIS PLUS MAGAZINE ON THE FOLLOWING TOPICS: THE IMPORTANCE AND WAYS PATIENTS CAN BECOME EFFECTIVE ADVOCATES; BREAKING DOWN BARRIERS TO RHEUMATOLOGY CARE; WHAT TO DO WHEN TREATMENT IS DENIED; AND MEDICAL GASLIGHTING. NOT ONLY ARE THERE 18 ACTIVE GRASSROOT CAMPAIGNS, SURVEYS, AND PETITIONS COVERING A WIDE RANGE OF PUBLIC POLICY ISSUES, SAA WROTE OR SIGNED ONTO 40 LETTERS TO LEGISLATORS OR PUBLIC OFFICIALS. SEVEN NEW ADVOCACY PODCASTS WERE AIRED ON SPONDYCAST. FURTHER, CAMPAIGNS ARE PROMOTED THROUGH SAA'S ESUN EMAIL, SAA'S EDUCATION/SUPPORT GROUP LEADERS, AND PUBLICLY THROUGH 63 POSTS MADE ON POPULAR SOCIAL MEDIA PLATFORMS OF FACEBOOK TWITTER, LINKEDIN, X, AND INSTAGRAM.
  Expenses $374,704
• HEALTH CARE PROVIDER EDUCATION AND OUTREACHBACK 2 SPA BASICS PILOT PROGRAM - THIS PROGRAM WAS CREATED TO RAISE SPA AWARENESS AND EDUCATE PRIMARY CARE PROVIDERS AND OTHER HEALTHCARE PROFESSIONALS WITHIN A HOSPITAL'S HEALTHCARE SYSTEM USING MEDICAL RESIDENTS AS TRAINERS. RESIDENTS WHO COMPLETED THEIR CORE CLINICAL TRAINING IN INTERNAL MEDICINE AND HAVE CHOSEN RHEUMATOLOGY AS A SPECIALTY PARTICIPATED IN A SERIES OF 3-5 TRAININGS ABOUT SPA CONDUCTED VIRTUALLY VIA ZOOM. ONCE THESE RESIDENTS COMPLETE THE "TRAIN-THE-TRAINER" CURRICULUM, THEY SET UP PRESENTATIONS AT THEIR LOCAL HOSPITALS TO PROVIDE EDUCATION AND INCREASE AWARENESS OF SPA. FOR THE PILOT PROGRAM, WE HAD 15 RESIDENTS ENROLL WHO THEN GAVE PRESENTATIONS ON SPA TO OVER 165 MEDICAL PROFESSIONALS WITHIN THEIR MEDICAL INSTITUTIONS. ACCREDITED ONLINE EDUCATION FOR FIRST RESPONDERS"EMS PITFALLS: ANKYLOSING SPONDYLITIS" - SAA'S COURSE FOR FIRST RESPONDERS, "EMS PITFALLS: ANKYLOSING SPONDYLITIS" WAS REACCREDITED IN DECEMBER 2022 AND CONTINUES 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 EMERGENCYSITUATIONS.ANESTHESIOLOGY AND AIRWAY MANAGEMENT MODULE THE SPONDYLITIS ASSOCIATION OF AMERICA LAUNCHED THE ONLINE ACCREDITED COURSE FOR ANESTHESIOLOGISTS IN EARLY FEBRUARY 2023. THIS COLLABORATION WITH HENRY FORD HEALTH AIMS TO PROVIDE A COMPREHENSIVE AND PRACTICAL LEARNING EXPERIENCE FOR HEALTHCARE PROFESSIONALS TO ENHANCE THEIR SKILLS IN AIRWAY MANAGEMENT FOR PATIENTS WITH ANKYLOSING SPONDYLITIS. THIS ACTIVITY IS GUARANTEED TO HAVE A MINIMUM OF 600 LEARNERS. CASEBASED MRI EDUCATIONAL TOOL FOR AXIAL SPONDYLOARTHRITISSAA SUPPORTED THE ENHANCEMENT BY CARE ARTHRITIS OF A MOBILE APP, LAUNCHED IN 2023, WHICH HOSTS AND DELIVERS MRI CASE STUDIES GEARED TO RHEUMATOLOGISTS AND RADIOLOGISTS. THE PROGRAM AIMS TO ADDRESS A TOPRANKED 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 IS CASEBASED AND INCLUDES BOTH CLINICAL AND IMAGING COMPONENTS. RHEUM TO DIAGNOSE - THE GOAL OF "RHEUM TO DIAGNOSE" IS TO ADDRESS REAL WORLD BARRIERS TO AN ACCURATE AND EXPEDIENT DIAGNOSIS OF NRAXSPA IN THE RHEUMATOLOGY SETTING. THE PHYSICIANFACING 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, ARE AVAILABLE ON SAA'S WEBSITE.
  Expenses $337,612

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in June, so each return is due on the 15th day of the 5th month after that.

IRS record

EIN

95-3890767

Tax-exempt status

501(c)(3): Charitable, religious, educational or scientific organization

Foundation status

Publicly supported organization (509(a)(2))

Donations deductible (Pub 78)

Public charity, 50% deduction limit

Exempt since

1984

Accounting year ends

June

Files

Form 990 or 990-EZ

Category (NTEE)

Voluntary health associations and medical disciplines (G55Z)

Assets (IRS master file)

$6,995,834

Income (IRS master file)

$3,604,354

Filing history

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 95-3890767).

Questions about SPONDYLITIS ASSOCIATION OF AMERICA

What is the EIN of SPONDYLITIS ASSOCIATION OF AMERICA?

The employer identification number (EIN) of SPONDYLITIS ASSOCIATION OF AMERICA is 95-3890767.

Is SPONDYLITIS ASSOCIATION OF AMERICA tax-exempt?

Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1984.

Are donations to SPONDYLITIS ASSOCIATION OF AMERICA tax-deductible?

Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).

Which annual return does SPONDYLITIS ASSOCIATION OF AMERICA file?

Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.

When is the next return of SPONDYLITIS ASSOCIATION OF AMERICA due?

The return for tax year 2026 (the year ending June 30, 2027) is due November 15, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.

When did SPONDYLITIS ASSOCIATION OF AMERICA last file with the IRS?

The latest return in the IRS public files is the 990 for the year ended June 2026.

Who is the principal officer of SPONDYLITIS ASSOCIATION OF AMERICA?

The 990 for the year ended June 30, 2026 names CASSIE SHAFER.

Who are the officers and directors of SPONDYLITIS ASSOCIATION OF AMERICA?

The 990 for the year ended June 30, 2026 lists 13 people; 4 received compensation from the organization, the highest $243,950 (CASSIE SHAFER, CHIEF EXECUTIVE OFFICER).

How much revenue does SPONDYLITIS ASSOCIATION OF AMERICA have?

On its 990 for the year ended June 30, 2026 it reported revenue of $2,164,525, expenses of $2,947,419 and total assets of $6,995,834 at year end.

Other nonprofits in ENCINO

• INTERNATIONAL SOCIETY FOR NEUROCHEMISTRY INC
  EIN 45-0677737 · last filed 990 for 2024
• AMERICAN HEAD AND NECK SOCIETY INC
  EIN 23-7323559 · last filed 990 for 2025
• LUPUS LA
  EIN 46-1126232 · last filed 990 for 2025
• STAND BY ME
  EIN 80-0486445 · last filed 990 for 2024
• SHANE ALYSE FOUNDATION
  EIN 46-2862293 · last filed 990-EZ for 2025
• TAHNEE FOUNDATION
  EIN 83-0926480 · last filed 990-EZ for 2024
• LATE ONSET TAY-SACHS RESEARCH ANDEDUCATION FOUNDATION
  EIN 20-5837476 · last filed 990-N for 2023
• AUTISM & SENSORY INTEGRATION FOUNDATION
  EIN 45-3046244 · last filed 990-N for 2025

All nonprofits in ENCINO · California · Voluntary health associations and medical disciplines