efile Public Visual Render
ObjectId: 202432749349301328 - Submission: 2024-09-30
TIN: 95-3890767
Form
990
Department of the Treasury
Internal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private foundations)
Do not enter social security numbers on this form as it may be made public.
Go to
www.irs.gov/Form990
for instructions and the latest information.
OMB No. 1545-0047
20
23
Open to Public Inspection
A
For the 2023 calendar year, or tax year beginning
07-01-2023
, and ending
06-30-2024
B
Check if applicable:
Address change
Name change
Initial return
Final return/terminated
Amended return
Application pending
C
Name of organization
SPONDYLITIS ASSOCIATION OF AMERICA
Doing business as
Number and street (or P.O. box if mail is not delivered to street address)
16430 VENTURA BLVD 300
Room/suite
City or town, state or province, country, and ZIP or foreign postal code
ENCINO
,
CA
91436
D Employer identification number
95-3890767
E Telephone number
(818) 892-1616
G
Gross receipts $
2,981,058
F
Name and address of principal officer:
CASSIE SHAFER
16430 VENTURA BLVD 300
ENCINO
,
CA
91436
I
Tax-exempt status:
501(c)(3)
501(c)
(
) (insert no.)
4947(a)(1)
or
527
J
Website:
WWW.SPONDYLITIS.ORG
H(a)
Is this a group return for
subordinates?
Yes
No
H(b)
Are all subordinates
included?
Yes
No
If "No," attach a list. See instructions.
H(c)
Group exemption number
K
Form of organization:
Corporation
Trust
Association
Other
L
Year of formation:
1983
M
State of legal domicile:
CA
Part I
Summary
1
Briefly describe the organization’s mission or most significant activities:
ADVANCING RESEARCH, ACCELERATED DIAGNOSIS, OPTIMUM TREATMENT, PUBLIC AWARENESS AND HEALTH CARE PROFESSIONAL EDUCATION IN SPONDYLOARTHRITIS
2
Check this box
3
Number of voting members of the governing body (
Part VI
, line 1a)
........
3
12
4
Number of independent voting members of the governing body (
Part VI
, line 1b)
.....
4
12
5
Total number of individuals employed in calendar year 2023 (
Part V
, line 2a)
......
5
15
6
Total number of volunteers (estimate if necessary)
.............
6
182
7a
Total unrelated business revenue from
Part VIII
, column (C), line 12
........
7a
0
b
Net unrelated business taxable income from Form 990-T, Part I, line 11
.........
7b
0
Prior Year
Current Year
8
Contributions and grants (
Part VIII
, line 1h)
.........
2,200,809
2,545,839
9
Program service revenue (
Part VIII
, line 2g)
.........
5,120
12,793
10
Investment income (
Part VIII
, column (A), lines 3, 4, and 7d )
....
142,607
222,916
11
Other revenue (
Part VIII
, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e)
0
0
12
Total revenue—add lines 8 through 11 (must equal
Part VIII
, column (A), line 12)
2,348,536
2,781,548
13
Grants and similar amounts paid (
Part IX
, column (A), lines 1–3 )
...
30,000
159,178
14
Benefits paid to or for members (
Part IX
, column (A), line 4)
.....
0
0
15
Salaries, other compensation, employee benefits (
Part IX
, column (A), lines 5–10)
1,504,909
1,586,995
16a
Professional fundraising fees (
Part IX
, column (A), line 11e)
.....
0
0
b
Total fundraising expenses (
Part IX
, column (D), line 25)
104,341
17
Other expenses (
Part IX
, column (A), lines 11a–11d, 11f–24e)
....
739,029
869,610
18
Total expenses. Add lines 13–17 (must equal
Part IX
, column (A), line 25)
2,273,938
2,615,783
19
Revenue less expenses. Subtract line 18 from line 12
.......
74,598
165,765
Beginning of Current Year
End of Year
20
Total assets (
Part X
, line 16)
.............
7,830,002
8,085,006
21
Total liabilities (
Part X
, line 26)
.............
413,366
381,762
22
Net assets or fund balances. Subtract line 21 from line 20
.....
7,416,636
7,703,244
Part II
Signature Block
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.
Sign Here
2024-09-30
Signature of officer
Date
CASSIE SHAFER
CHIEF EXECUTIVE OFFICER
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
Preparer's signature
Date
Check
if
self-employed
PTIN
P01582463
Firm's name
QUIGLEY & MIRON
Firm's EIN
32-0530003
Firm's address
3550 WILSHIRE BLVD 1660
LOS ANGELES
,
CA
90010
Phone no.
(213) 639-3550
May the IRS discuss this return with the preparer shown above? See Instructions.
..........
Yes
No
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y
Form
990
(2023)
Page 2
Form 990 (2023)
Page
2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response or note to any line in this
Part III
..............
1
Briefly describe the organization’s 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.
2
Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ?
.....................
Yes
No
If "Yes," describe these new services on Schedule O.
3
Did the organization cease conducting, or make significant changes in how it conducts, any program
services?
...........................
Yes
No
If "Yes," describe these changes on Schedule O.
4
Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.
4a
(Code:
) (Expenses $
1,015,649
including grants of $
) (Revenue $
12,793
)
SOCIAL 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, 2024, OUR SOCIAL MEDIA CHANNELS EARNED 1,330,300 IMPRESSIONS, 47,396 ENGAGEMENTS (LIKES, SHARES, COMMENTS) AND 8,933 POST LINK CLICKS. FACEBOOK ACCOUNTED FOR 807,112 IMPRESSIONS; INSTAGRAM ACCOUNTED FOR 349,320, TWITTER ACCOUNTED FOR 144,254, AND LINKEDIN ACCOUNTED FOR 29, 614. 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 2023/2024 FISCAL YEAR, THERE WERE 83.5K VIEWS AND 1.1. MILLION IMPRESSIONS OF VIDEO CONTENT ON OUR YOUTUBE CHANNEL.SAA WEBSITE-DURING THE 2023/2024 FISCAL YEAR, SAA WEBSITE HAD 739,399 PAGE VIEWS AND 309,933 UNIQUE USERS. IN TERMS OF DEMOGRAPHICS, 58 PERCENT OF WEBSITE VISITORS ARE FEMALE, AND 42 PERCENT ARE MALE. THE AGE GROUPS WERE EVENLY DISTRIBUTED 25-34 (15,563), 35-44 (13,041), AND 45 - 54 (11,744).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 21,878 MEMBERS PARTICIPATING IN 255, 108 POSTS/DISCUSSIONS.SPONDYLOARTHRITIS (SPA) AWARENESS MONTH-SPONDYLOARTHRITIS (SPA) AWARENESS MONTH WAS CELEBRATED MAY 2024. RAISING AWARENESS DURING MAY AND THROUGHOUT THE YEAR HELPS INCREASE VISIBILITY OF SPONDYLOARTHRITIS. 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 2024 FOCUSED ON SIGNS & SYMPTOMS, BASED ON THE TOPIC OUR PARTNERS AT ASIF PINNED FOR WORLD AS DAY.ADVOCACYSAA'S ADVOCACY PROGRAM IS EVER-EXPANDING IN BOTH THE NUMBER OF INITIATIVES AND ACTIONS TAKEN AND SPONDYLITIS COMMUNITY ADVOCATES. ADVOCACY PLANS ARE INFORMED BY THE STRATEGIC PRIORITIES OF INCREASING PUBLIC AWARENESS, IMPROVING ACCESS TO HEALTH CARE, INCREASING FEDERAL RESEARCH FUNDING TO CURE SPONDYLITIS, AND INFLUENCING PUBLIC POLICIES THAT IMPACT THE SPONDYLITIS COMMUNITY. SAA ADVOCACY EFFORTS SEEK TO CREATE POSITIVE CHANGE ON BEHALF OF AND WITHIN THE SPONDYLITIS COMMUNITY THROUGH STATE AND NATIONAL CAMPAIGNS. THE EFFORTS USE A MULTICHANNEL APPROACH TO REACH POTENTIAL ADVOCATES AND TARGETED LEGISLATORS 'WHERE THEY ARE AT,' WHETHER IT IS ON SOCIAL MEDIA, EMAIL, WEBSITES, PODCASTS, NEWSPAPERS, AND WITHIN SAA PUBLICATIONS. THE ADVOCATE'S ACTIONABLE ITEMS INCLUDE SURVEYS, PETITIONS, POLLS, LETTER-WRITING CAMPAIGNS, LETTERS AND EMAILS TO SPECIFIC LEGISLATORS, AND WHEN-POSSIBLE, THROUGH IN-PERSON CONVERSATIONS WITH STATE, LOCAL, AND NATIONAL LEGISLATORS. SPECIFIC ACTIVITIES INCLUDE THE SURVEY & CAMPAIGN "HAVE YOU EXPERIENCED MEDICAL GASLIGHTING. AND CREATING OTHER NEW CAMPAIGNS LIKE "SELF-ADVOCACY: AT YOUR DOCTOR'S APPOINTMENT" HIGHLIGHTING SAA ADVICE AND RESOURCES AS PART OF AN ONGOING, EVERGREEN SELF-ADVOCACY RESOURCES SERIES, AND ARTICLES IN SPONDYLITIS PLUS MAGAZINE SUCH AS "WHAT IS STEP THERAPY AND WHY YOU SHOULD CARE AND "THE USE OF AI FOR HEALTHCARE DECISIONS COULD HELP AND HARM PATIENTS." SAA'S RICHARD HOWARD WAS AN AUTHOR ON ALTERNATIVE FUNDING PROGRAMS' ARTICLE PUBLISHED IN THE MAY ISSUE OF HR.COM'S HR LEGAL & COMPLIANCE EXCELLENCE MAGAZINE. IN ADDITION, SAA SIGNED ON ITS SUPPORT FOR PBM REFORMS TO IMPROVE PATIENT ACCESS TO LOWER COST MEDICATIONS AND THE ALL COPAYS COUNT COALITION LETTERS TO STATE INSURANCE COMMISSIONERS URGING THEM TO ENFORCE THE 2020 NBPP PROVISION RESTRICTING USE OF COPAY ACCUMULATOR ADJUSTORS, WROTE LETTERS IN SUPPORT OF CA SB 1120 - PHYSICIANS MAKE DECISIONS ACT, WHICH MANDATES PHYSICIAN OVERSIGHT WHEN ALGORITHMS ARE USED TO DECIDE ON HEALTHCARE PROVIDERS' REQUESTS TO OFFER MEDICAL SERVICES, AND NUMEROUS OTHERS ON KEY TOPIC AREAS TO IMPROVE PATIENT ACCESS AND IMPACT OUR SPONDYLOARTHRITIS COMMUNITY.
4b
(Code:
) (Expenses $
347,043
including grants of $
) (Revenue $
)
BACK 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. 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 EMERGENCY SITUATIONS.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. CASE-BASED MRI EDUCATIONAL TOOL FOR AXIAL SPONDYLOARTHRITIS-SAA 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 TOP-RANKED UNMET EDUCATIONAL NEED IN THE FIELD OF SPONDYLOARTHRITIS, NAMELY, THE APPROPRIATE INTERPRETATION OF MRI BY RHEUMATOLOGISTS AND RADIOLOGISTS FOR EARLY DIAGNOSIS OF SPA. THE APP STREAMING CONTENT IS CASE-BASED 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 NR-AXSPA IN THE RHEUMATOLOGY SETTING. THE PHYSICIAN-FACING CONTENT OF RHEUM TO DIAGNOSE INCLUDES A TOTAL OF SIX PRESENTATIONS FEATURING EXPERTS IN SPONDYLOARTHRITIS, GEARED TO TWO DISTINCT AUDIENCES: RHEUMATOLOGY FELLOWS, AND MEDICAL STUDENTS. ALL SIX PRESENTATIONS (THREE FOR RHEUMATOLOGY FELLOWS, AND THREE FOR MEDICAL STUDENTS) ALONG WITH A PROMOTIONAL TRAILER, ARE AVAILABLE ON SAA'S WEBSITE.
4c
(Code:
) (Expenses $
296,119
including grants of $
) (Revenue $
)
EDUCATION AND AWARENESSPATIENT EDUCATIONAL SEMINARS, WEBINARS, AND HEALTH EDUCATION CONTENT, ALONG WITH PATIENT SUPPORT PROGRAMS ARE DELIVERED VIA VARIOUS DIGITAL OUTLETS. SAA'S INTERACTIVE WEBSITE, LOCATED AT SPONDYLITIS.ORG, CONTAINS THOUSANDS OF PAGES OF SPONDYLOARTHRITIS INFORMATION, AND SERVES ALMOST 600,000 UNIQUE VISITORS EACH YEAR.PATIENT EDUCATIONAL SEMINARS WERE HELD VIRTUALLY UTILIZING A ROBUST AND INTERACTIVE VIRTUAL CONFERENCE PLATFORM. THE PLATFORM FEATURED AN ANIMATED AND INTERACTIVE LOBBY TO ACCESS DIFFERENT PARTS OF THE CONFERENCE HALL, INCLUDING THE EXHIBIT HALL, ACTIVITY LOUNGE, SPA RESOURCES HUB, AND PRESENTATION HALL - WHERE ATTENDEES ACCESSED THE SPEAKERS' LIVE PRESENTATIONS AND TOOK PART IN MODERATED Q&A SESSIONS. IN ADDITION, "FACEBOOK LIVE" BROADCASTS WERE ALSO CONDUCTED. THESE BROADCASTS ARE RECORDED AND AVAILABLE FOR FUTURE USE THROUGH THE SAA WEBSITE.PATIENT EDUCATION PUBLICATIONS INCLUDE A COLLECTION OF 12 UPDATED (AND PHYSICIAN VETTED) ENGLISH LANGUAGE SPONDYLOARTHRITIS EDUCATIONAL BROCHURES, AND 10 SPANISH LANGUAGE BROCHURES.AMONG THEM ARE OUR NEWEST BROCHURES, "TALKING TO YOUR DOCTOR ABOUT SPONDYLOARTHRITIS, AND "WHAT IS NR-AXSPA.". ADDITIONALLY, THE EXISTING "WHAT IS ANKYLOSING SPONDYLITIS" BROCHURE WAS REWRITTEN AND REDESIGNED. SAA ALSO OFFERS 10 SPANISH LANGUAGE BROCHURES.SPONDYLITIS PLUS MAGAZINE-SAA MEMBERS RECEIVE QUARTERLY ISSUES OF THE ORGANIZATION'S PREMIERE PRINT PUBLICATION. SPONDYLITIS PLUS PROVIDES IN-DEPTH COVERAGE OF ISSUES SUCH AS PAIN, FATIGUE, AND OTHER COMPLICATIONS, DISCUSSES THE LATEST RESEARCH AND TREATMENT INFORMATION - OFTEN PRESENTED BY PROMINENT RHEUMATOLOGISTS AND RESEARCHERS, FEATURES MOVING AND UNIQUE PERSONAL STORIES FROM OTHERS WITH SPONDYLOARTHRITIS, AND MUCH MORE. OVER 4,500 COPIES ARE DISTRIBUTED QUARTERLY.STRAIGHT TALK ON SPONDYLOARTHRITIS BOOK - THE 4TH EDITION OF THIS LEGACY PUBLICATION WAS FULLY RE-WRITTEN AND REDESIGNED. RELEASED IN DECEMBER OF 2023, THIS FULL COLOR EDITION FEATURES 12 NEW CHAPTERS, WRITTEN BY VARIOUS CONTENT EXPERTS, AND RECEIVED A FULL REDESIGN.ESUN-ALMOST 45,000 PEOPLE SUBSCRIBE TO AND RECEIVE SAA'S ESUN EACH MONTH. ESUN, THE ELECTRONIC SPONDYLOARTHRITIS UPDATE NEWSLETTER, CONTAINS A VARIETY OF SPONDYLOARTHRITIS-RELATED CONTENT, SUCH AS NEWS, RESEARCH OPPORTUNITIES, UPCOMING SAA PROGRAMS AND OPPORTUNITIES, STORIES FROM THOSE LIVING WITH SPONDYLOARTHRITIS, AND MORE.SPONDYCAST PODCAST SERIES-SAA LAUNCHED A NEW WEEKLY PODCAST CALLED SPONDYCAST IN MARCH 2023, WITH AN ADDITIONAL 48 EPISODES RELEASED IN FY24. 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, GOOGLE PODCASTS, AND MORE. "LIFE AFTER DIAGNOSIS" VIDEO SERIES-THIS 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 2,400 PARTICIPANTS HAVE ENROLLED IN THIS PROGRAM. ANIMATED VIDEO: WHAT IS NR-AXSPA?-SAA WORKED WITH A DIGITAL MEDIA PRODUCTION COMPANY TO SCRIPT AND DEVELOP OUR NEWEST ANIMATED EDUCATIONAL VIDEO, "WHAT IS NR-AXSPA?" THIS PIECE DISCUSSES COMMON SIGNS AND SYMPTOMS OF NR-AXSPA AND SHARES HELPFUL INFORMATION AND RESOURCES FOR THOSE IMPACTED (WHETHER DIAGNOSED OR NOT.)HEALTHY LIVING WITH AXSPA-THANKS TO THE SPONSORSHIP OF UCB, SAA CREATED A 2-PART VIDEO SERIES CALLED HEALTHY LIVING WITH AXSPA. THE FIRST VIDEO IN THIS UNIQUE SERIES, HEALTHY LIVING WITH AXSPA: COOKING WITH KEVIN GILLESPIE, FEATURES A COOKING DEMONSTRATION TO EDUCATE AND INSPIRE PEOPLE TO EMBRACE AN ANTI-INFLAMMATORY DIET FOR IMPROVED HEALTH OUTCOMES. IN THE SECOND VIDEO OF THE SERIES, HEALTHY LIVING WITH AXSPA: MANAGING MENTAL AND EMOTIONAL HEALTH, RHEUMATOLOGIST HILLARY NORTON AND LICENSED PSYCHOLOGIST DR. JANA LOMAX DISCUSS THE IMPACT OF SPONDYLOARTHRITIS ON MENTAL HEALTH AND PROVIDE TIPS THAT CAN MAKE A HUGE IMPACT ON WELL-BEING WHILE MANAGING A CHRONIC CONDITION. BOTH VIDEOS ARE AVAILABLE ON SAA'S WEBSITE AS ENDURING CONTENT. GLOBAL SPONDYLOARTHRITIS SUMMIT 2024-SAA'S SIGNATURE ONLINE EDUCATIONAL PROGRAM, 6TH ANNUAL GLOBAL SPONDYLOARTHRITIS SUMMIT, TOOK PLACE MAY 3-4. THIS YEAR'S SUMMIT FEATURED 6 PRESENTATIONS BY SUBJECT MATTER EXPERTS, 4 BREAKOUT GROUP SESSIONS COVERING TOPICS AIMED AT FOSTERING PEER CONNECTION AND SUPPORT WITHIN OUR COMMUNITY, AND 2 PHYSICAL MOVEMENT SESSIONS TO ENCOURAGE PARTICIPANTS TO BE ACTIVE. WE OFFERED A MORE INTERACTIVE EXPERIENCE, ENABLING PARTICIPANTS TO NOT ONLY GAIN VALUABLE MEDICAL INSIGHTS BUT ALSO CONNECT WITH PEERS IN THEIR COMMUNITY THAT CAN POSITIVELY IMPACT THEIR WELL-BEING. IT ALSO FEATURED DAILY TRIVIA QUIZZES, A LEADERBOARD CHALLENGE, AN ACTIVITY LOUNGE AND AN EXHIBIT HALL. SAA ALSO PROVIDED SPANISH LANGUAGE SUBTITLES FOR THE PRESENTATIONS. MORE THAN 3,000 ATTENDEES FROM 94 COUNTRIES REGISTERED FOR THIS YEAR'S EVENT. RECORDINGS OF THE PRESENTATIONS AND Q&AS, AS WELL AS NOTES DETAILING HIGHLIGHTS FROM THE BREAKOUT SESSIONS ARE AVAILABLE AS ENDURING CONTENT ON SAA'S WEBSITE, SAA'S SUPPORT GROUPS-FROM JULY 1, 2023, TO JUNE 30, 2024, 37 ACTIVE SUPPORT GROUP LEADERS CONDUCTED A TOTAL OF 192 SUPPORT GROUP MEETINGS. OUR SUPPORT GROUPS SPANNED 20 STATES, 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. 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. WE WELCOMED THREE NEW SUPPORT GROUP LEADERS (TWIN CITIES, MN, WORCESTER, MA, AND NYC, NY). THESE ADDITIONS REFLECT OUR ONGOING EFFORTS TO EXPAND OUR REACH AND ENHANCE SUPPORT FOR INDIVIDUALS WITH ANKYLOSING SPONDYLITIS IN NEW REGIONS.CURRENTLY, OUR "MEETINGS WITHOUT BORDERS" INITIATIVE CONTINUES TO GROW, WITH 318 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.
(Code:
) (Expenses $
418,736
including grants of $
159,178
) (Revenue $
)
EARLY CAREER INVESTIGATOR AWARDS (ECI)- DR. MICHAEL PALEY, ASSISTANT PROFESSOR OF MEDICINE IN THE DIVISION OF RHEUMATOLOGY AT WASHINGTON UNIVERSITY SCHOOL OF MEDICINE, WON THE PRESTIGIOUS $30,000 JANE BRUCKEL EARLY CAREER INVESTIGATOR AWARD IN AXIAL SPONDYLOARTHRITIS. DR. PALEY'S RESEARCH FOCUSES ON STUDYING SYSTEMIC INFLAMMATORY DISORDERS IN IMMUNE-PRIVILEGED ORGANS (I.E., AREAS OF THE BODY THAT ARE LESS LIKELY TO HAVE AN IMMUNE RESPONSE) SUCH AS THE EYES AND THE BRAIN. THIS INCLUDES HLA-B27+ ANTERIOR UVEITIS IN AXIAL SPONDYLOARTHRITIS AND NEUROLOGICAL INFLAMMATION FROM SARCOIDOSIS. AS AN OCULAR RHEUMATOLOGIST, HIS RESEARCH ON HLA-B27+ ANTERIOR UVEITIS LED HIM TO AXIAL SPONDYLOARTHRITIS RESEARCH.IN ADDITION TO FUNDING ECI AWARDS THE ORGANIZATION RECEIVES FUNDING REQUESTS FROM OUTSIDE SOURCES TO SUPPORT RESEARCH RELATED TO SPONDYLOARTHRITIS. SAA 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:-TEJPAL GILL, PHD AT THE OREGON HEALTH & SCIENCE UNIVERSITY - INNOVATIVE STUDY "CHARACTERIZING AUTOIMMUNITY IN ANKYLOSING SPONDYLITIS" EMPLOYS BASIC SCIENCE RESEARCH USING CLINICAL SAMPLES AS WELL AS HLA-B27 TRANSGENIC RAT MODELS OF SPONDYLOARTHRITIS (SPA) TO ELUCIDATE AUTOIMMUNE MECHANISMS UNDERLYING AS PATHOGENESIS.-PAM WEISS, MD- NOVEL JUVENILE SPONDYLOARTHRITIS STUDY OF "ANTI-DRUG ANTIBODY DEVELOPMENT AND THE ROLE OF IMAGING TO SCREEN FOR AXIAL DISEASE FLARE AFTER TNF INHIBITOR DE-ESCALATION." ADDRESSES CRITICAL QUESTIONS BY PARENTS REGARDING THE RAMIFICATIONS OF DE-ESCALATING BIOLOGIC TREATMENTS WHEN DISEASE HAS BEEN INACTIVE. SAA, IN COLLABORATION WITH THE NATIONAL INSTITUTES OF HEALTH (NIH), HOSTED THE 2023 SPONDYLOARTHRITIS UNMET RESEARCH NEEDS CONFERENCE IV AT THE NIH IN BETHESDA, MARYLAND TO DISCUSS THE FUTURE OF SPONDYLOARTHRITIS RESEARCH AND EXISTING GAPS OF KNOWLEDGE AND UNDERSTANDING OF THE DISEASE. THE PRESENTERS WERE WORLD RENOWNED EXPERTS IN THE FOLLOWING SPECIFIC AREAS THAT WERE IDENTIFIED BY THE PLANNING COMMITTEE TO ADDRESS UNMET NEEDS IN SPA RESEARCH: ENDOTYPES (DISEASE SUBTYPES), PAIN, IMAGING, HEALTH DISPARITIES, AND THERAPEUTICS. THIS HIGHLY VALUED SEPTEMBER MEETING CONTINUED THE TRADITION OF EXCELLENCE AND IMPACT ON RESEARCH SEEN IN PREVIOUS CONFERENCES HELD IN 1998, 2006, AND 2017. IN ADDITION TO INVITING THE LEADING SPONDYLOARTHRITIS RESEARCHERS, A CONCERTED EFFORT WAS MADE TO INVITE -AND SPONSOR- RESEARCHERS WHO ARE EARLY IN THEIR CAREERS TO INSPIRE AND ENCOURAGE THEM TO BE THE NEXT GENERATION OF LEADING SCIENTISTS. THESE EARLY CAREER RESEARCHERS WERE NOT ONLY FULL PARTICIPANTS IN THE CONFERENCE, BUT THEY ALSO PRESENTED POSTERS ON THEIR SPONDYLOARTHRITIS RESEARCH. THE CONFERENCE WAS FINANCIALLY SUPPORTED BY CORPORATE SPONSOR NOVARTIS, AND BY A VERY GENEROUS BEQUEST TO SAA.SAA, IN COLLABORATION WITH THE NATIONAL INSTITUTES OF HEALTH (NIH), HOSTED THE 2023 SPONDYLOARTHRITIS UNMET RESEARCH NEEDS CONFERENCE IV AT THE NIH IN BETHESDA, MARYLAND TO DISCUSS THE FUTURE OF SPONDYLOARTHRITIS RESEARCH AND EXISTING GAPS OF KNOWLEDGE AND UNDERSTANDING OF THE DISEASE. THE PRESENTERS WERE WORLD RENOWNED EXPERTS IN THE FOLLOWING SPECIFIC AREAS THAT WERE IDENTIFIED BY THE PLANNING COMMITTEE TO ADDRESS UNMET NEEDS IN SPA RESEARCH: ENDOTYPES (DISEASE SUBTYPES), PAIN, IMAGING, HEALTH DISPARITIES, AND THERAPEUTICS. THIS HIGHLY VALUED SEPTEMBER MEETING CONTINUED THE TRADITION OF EXCELLENCE & IMPACT ON RESEARCH SEEN IN PREVIOUS CONFERENCES HELD IN 1998, 2006, AND 2017. IN ADDITION TO INVITING THE LEADING SPONDYLOARTHRITIS RESEARCHERS, A CONCERTED EFFORT WAS MADE TO INVITE -AND SPONSOR- RESEARCHERS WHO ARE EARLY IN THEIR CAREERS TO INSPIRE AND ENCOURAGE THEM TO BE THE NEXT GENERATION OF LEADING SCIENTISTS. THESE EARLY CAREER RESEARCHERS WERE NOT ONLY FULL PARTICIPANTS IN THE CONFERENCE, BUT THEY ALSO PRESENTED POSTERS ON THEIR SPONDYLOARTHRITIS RESEARCH. THE CONFERENCE WAS FINANCIALLY SUPPORTED BY CORPORATE SPONSOR NOVARTIS, AND BY A VERY GENEROUS BEQUEST TO SAA.
4d
Other program services (Describe in Schedule O.)
(Expenses $
418,736
including grants of $
159,178
) (Revenue $
)
4e
Total program service expenses
2,077,547
Form
990
(2023)
Page 3
Form 990 (2023)
Page
3
Part IV
Checklist of Required Schedules
Yes
No
1
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)?
If "Yes," complete Schedule A
List of Attached Documents:
// Content
.....................
1
Yes
2
Is the organization required to complete
Schedule B, Schedule of Contributors
? See instructions.
List of Attached Documents:
// Content
...
2
Yes
3
Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office?
If "Yes," complete Schedule C,
Part I
.............
3
No
4
Section 501(c)(3) organizations.
Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year?
If "Yes," complete Schedule C,
Part II
.........
4
No
5
Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Rev. Proc. 98-19?
If "Yes," complete Schedule C,
Part III
..
5
No
6
Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts?
If "Yes," complete
Schedule D,
Part I
List of Attached Documents:
// Content
.........................
6
No
7
Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures?
If "Yes," complete Schedule D,
Part II
List of Attached Documents:
// Content
....
7
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets?
If "Yes,"
complete Schedule D,
Part III
List of Attached Documents:
// Content
..............
8
No
9
Did the organization report an amount in
Part X
, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in
Part X
; or provide credit counseling, debt management, credit repair, or debt negotiation services?
If "Yes," complete Schedule D,
Part IV
List of Attached Documents:
// Content
..............
9
No
10
Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi endowments?
If "Yes," complete Schedule D,
Part V
......
10
No
11
If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X, as applicable.
a
Did the organization report an amount for land, buildings, and equipment in
Part X
, line 10?
If "Yes," complete
Schedule D,
Part VI
.
List of Attached Documents:
// Content
...................
11a
Yes
b
Did the organization report an amount for investments—other securities in
Part X
, line 12 that is 5% or more of its total assets reported in
Part X
, line 16?
If "Yes," complete Schedule D,
Part VII
List of Attached Documents:
// Content
.......
11b
No
c
Did the organization report an amount for investments—program related in
Part X
, line 13 that is 5% or more of its total assets reported in
Part X
, line 16?
If "Yes," complete Schedule D,
Part VIII
List of Attached Documents:
// Content
.......
11c
No
d
Did the organization report an amount for other assets in
Part X
, line 15 that is 5% or more of its total assets reported in
Part X
, line 16?
If "Yes," complete Schedule D,
Part IX
List of Attached Documents:
// Content
............
11d
No
e
Did the organization report an amount for other liabilities in
Part X
, line 25?
If "Yes," complete Schedule D,
Part X
List of Attached Documents:
// Content
11e
Yes
f
Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)?
If "Yes," complete Schedule D,
Part X
List of Attached Documents:
// Content
11f
Yes
12a
Did the organization obtain separate, independent audited financial statements for the tax year?
If "Yes," complete
Schedule D, Parts XI and XII
List of Attached Documents:
// Content
......................
12a
Yes
b
Was the organization included in consolidated, independent audited financial statements for the tax year?
If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional
List of Attached Documents:
// Content
12b
No
13
Is the organization a school described in section 170(b)(1)(A)(ii)?
If "Yes," complete Schedule E
13
No
14a
Did the organization maintain an office, employees, or agents outside of the United States?
.....
14a
No
b
Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more?
If "Yes," complete Schedule F, Parts I and IV
.........
14b
No
15
Did the organization report on
Part IX
, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization?
If “Yes,” complete Schedule F, Parts II and IV
.....
15
No
16
Did the organization report on
Part IX
, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals?
If “Yes,” complete Schedule F, Parts III and IV
...
16
No
17
Did the organization report a total of more than $15,000 of expenses for professional fundraising services on
Part IX
, column (A), lines 6 and 11e?
If "Yes," complete Schedule G,
Part I.
See instructions.
....
17
No
18
Did the organization report more than $15,000 total of fundraising event gross income and contributions on
Part VIII
, lines 1c and 8a?
If "Yes," complete Schedule G,
Part II
............
18
No
19
Did the organization report more than $15,000 of gross income from gaming activities on
Part VIII
, line 9a?
If "Yes," complete Schedule G,
Part III
...................
19
No
20a
Did the organization operate one or more hospital facilities?
If "Yes," complete Schedule H
....
20a
No
b
If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?
20b
21
Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on
Part IX
, column (A), line 1?
If “Yes,” complete Schedule I, Parts I and II
.....
List of Attached Documents:
// Content
21
Yes
Form
990
(2023)
Page 4
Form 990 (2023)
Page
4
Part IV
Checklist of Required Schedules
(continued)
Yes
No
22
Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on
Part IX
, column (A), line 2?
If “Yes,” complete Schedule I, Parts I and III
........
List of Attached Documents:
// Content
22
No
23
Did the organization answer "Yes" to
Part VII
, Section A, line 3, 4, or 5, about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees?
If "Yes," complete Schedule J
.......................
List of Attached Documents:
// Content
23
Yes
24a
Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002?
If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a
...............
24a
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?
...
24b
c
Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds?
...............
24c
d
Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?
...
24d
25a
Section 501(c)(3), 501(c)(4), and 501(c)(29) organizations.
Did the organization engage in an excess benefit transaction with a disqualified person during the year?
If "Yes," complete Schedule L,
Part I
....
25a
No
b
Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ?
If "Yes," complete Schedule L,
Part I
.......................
25b
No
26
Did the organization report any amount on Part X, line 5 or 22 for receivables from or payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons?
If "Yes," complete Schedule L,
Part II
...........
26
No
27
Did the organization provide a grant or other assistance to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or employee thereof, a grant selection committee member, or to a 35% controlled entity (including an employee thereof) or family member of any of these persons?
If "Yes," complete
Schedule L,
Part III
.........................
27
No
28
Was the organization a party to a business transaction with one of the following parties (see the Schedule L,
Part IV
instructions for applicable filing thresholds, conditions, and exceptions):
a
A current or former officer, director, trustee, key employee, creator or founder, or substantial contributor?
If "Yes," complete Schedule L,
Part IV
......................
28a
No
b
A family member of any individual described in line 28a?
If "Yes," complete Schedule L,
Part IV
.....
28b
No
c
A 35% controlled entity of one or more individuals and/or organizations described in line 28a or 28b?
If "Yes," complete Schedule L,
Part IV
.....................
28c
No
29
Did the organization receive more than $25,000 in non-cash contributions?
If "Yes," complete Schedule M
..
29
No
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions?
If "Yes," complete Schedule M
.................
30
No
31
Did the organization liquidate, terminate, or dissolve and cease operations?
If "Yes," complete Schedule N,
Part I
31
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets?
If "Yes," complete Schedule N,
Part II
........................
32
No
33
Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3?
If "Yes," complete Schedule R,
Part I
............
33
No
34
Was the organization related to any tax-exempt or taxable entity?
If "Yes," complete Schedule R,
Part II
, III, or IV, and
Part V
, line 1
.........................
34
No
35a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?
35a
No
b
If ‘Yes’ to line 35a, did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)?
If "Yes," complete Schedule R,
Part V
, line 2
...
35b
36
Section 501(c)(3) organizations.
Did the organization make any transfers to an exempt non-charitable related organization?
If "Yes," complete Schedule R,
Part V
, line 2
.............
36
No
37
Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes?
If "Yes," complete Schedule R,
Part VI
37
No
38
Did the organization complete Schedule O and provide explanations on Schedule O for
Part VI
, lines 11b and 19?
Note.
All Form 990 filers are required to complete Schedule O.
............
38
Yes
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this
Part V
...........
Yes
No
1a
Enter the number reported in box 3 of Form 1096. Enter -0- if not applicable
..
1a
21
b
Enter the number of Forms W-2G included on line 1a. Enter -0- if not applicable
.
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners?
..................
1c
Form
990
(2023)
Page 5
Form 990 (2023)
Page
5
Part V
Statements Regarding Other IRS Filings and Tax Compliance
(continued)
2a
Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return
..................
2a
15
b
If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
2b
Yes
3a
Did the organization have unrelated business gross income of $1,000 or more during the year?
...
3a
No
b
If “Yes,” has it filed a Form 990-T for this year?
If “No” to line 3b, provide an explanation in Schedule O
...
3b
4a
At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)?
..
4a
No
b
If "Yes," enter the name of the foreign country:
See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).
5a
Was the organization a party to a prohibited tax shelter transaction at any time during the tax year?
..
5a
No
b
Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?
5b
No
c
If "Yes," to line 5a or 5b, did the organization file Form 8886-T?
............
5c
6a
Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions?
...
6a
No
b
If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible?
......................
6b
7
Organizations that may receive deductible contributions under section 170(c).
a
Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor?
....................
7a
No
b
If "Yes," did the organization notify the donor of the value of the goods or services provided?
.....
7b
c
Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282?
.........................
7c
No
d
If "Yes," indicate the number of Forms 8282 filed during the year
....
7d
e
Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?
7e
No
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract?
..
7f
No
g
If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required?
......................
7g
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C?
..........................
7h
8
Sponsoring organizations maintaining donor advised funds.
Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year?
........
8
9
Sponsoring organizations maintaining donor advised funds.
a
Did the sponsoring organization make any taxable distributions under section 4966?
........
9a
b
Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?
...
9b
10
Section 501(c)(7) organizations.
Enter:
a
Initiation fees and capital contributions included on
Part VIII
, line 12
...
10a
b
Gross receipts, included on Form 990,
Part VIII
, line 12, for public use of club facilities
10b
11
Section 501(c)(12) organizations.
Enter:
a
Gross income from members or shareholders
.........
11a
b
Gross income from other sources. (Do not net amounts due or paid to other sources against amounts due or received from them.)
..........
11b
12a
Section 4947(a)(1) non-exempt charitable trusts.
Is the organization filing Form 990 in lieu of Form 1041?
12a
b
If "Yes," enter the amount of tax-exempt interest received or accrued during the year.
12b
13
Section 501(c)(29) qualified nonprofit health insurance issuers.
a
Is the organization licensed to issue qualified health plans in more than one state?
.........
Note.
See the instructions for additional information the organization must report on Schedule O.
13a
b
Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans
....
13b
c
Enter the amount of reserves on hand
............
13c
14a
Did the organization receive any payments for indoor tanning services during the tax year?
.....
14a
No
b
If "Yes," has it filed a Form 720 to report these payments?
If "No," provide an explanation in Schedule O
..
14b
15
Is the organization subject to the section 4960 tax on payment(s) of more than $1,000,000 in remuneration or excess parachute payment(s) during the year?
....................
If "Yes," see the instructions and file Form 4720, Schedule N.
15
No
16
Is the organization an educational institution subject to the section 4968 excise tax on net investment income?
..
If "Yes," complete Form 4720, Schedule O.
16
No
17
Section 501(c)(21) organizations.
Did the trust, or any disqualified or other person engage in any activities that would result in the imposition of an excise tax under section 4951, 4952, or 4953?
..
If "Yes," complete Form 6069.
17
Form
990
(2023)
Page 6
Form 990 (2023)
Page
6
Part VI
Governance, Management, and Disclosure.
For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines
8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response or note to any line in this
Part VI
..............
Section A. Governing Body and Management
Yes
No
1a
Enter the number of voting members of the governing body at the end of the tax year
1a
12
If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
b
Enter the number of voting members included in line 1a, above, who are independent
1b
12
2
Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee?
.................
2
No
3
Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person?
.
3
No
4
Did the organization make any significant changes to its governing documents since the prior Form 990 was filed?
.
4
No
5
Did the organization become aware during the year of a significant diversion of the organization’s assets?
.
5
No
6
Did the organization have members or stockholders?
................
6
No
7a
Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body?
....................
7a
No
b
Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body?
...................
7b
No
8
Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:
a
The governing body?
.......................
8a
Yes
b
Each committee with authority to act on behalf of the governing body?
............
8b
Yes
9
Is there any officer, director, trustee, or key employee listed in
Part VII
, Section A, who cannot be reached at the organization’s mailing address?
If "Yes," provide the names and addresses in Schedule O
.......
9
No
Section B. Policies
(
This Section B requests information about policies not required by the Internal Revenue Code.
)
Yes
No
10a
Did the organization have local chapters, branches, or affiliates?
............
10a
No
b
If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?
10b
11a
Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form?
............................
11a
Yes
b
Describe on Schedule O the process, if any, used by the organization to review this Form 990.
.....
12a
Did the organization have a written conflict of interest policy?
If "No," go to line 13
.......
12a
Yes
b
Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts?
..........................
12b
Yes
c
Did the organization regularly and consistently monitor and enforce compliance with the policy?
If "Yes," describe on Schedule O how this was done
...................
12c
Yes
13
Did the organization have a written whistleblower policy?
...............
13
Yes
14
Did the organization have a written document retention and destruction policy?
.........
14
Yes
15
Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?
a
The organization’s CEO, Executive Director, or top management official
...........
15a
Yes
b
Other officers or key employees of the organization
................
15b
Yes
If "Yes" to line 15a or 15b, describe the process on Schedule O. See instructions.
16a
Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year?
......................
16a
No
b
If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements?
............
16b
Section C. Disclosure
17
List the states with which a copy of this Form 990 is required to be filed
CA
18
Section 6104 requires an organization to make its Form 1023 (1024 or 1024-A, if applicable), 990, and 990-T (section 501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.
Own website
Another's website
Upon request
Other (explain in Schedule O)
19
Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.
20
State the name, address, and telephone number of the person who possesses the organization's books and records:
CASSIE SHAFER
16430 VENTURA BLVD SUITE 300
ENCINO
,
CA
91436
(818) 892-1616
Form
990
(2023)
Page 7
Form 990 (2023)
Page
7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response or note to any line in this
Part VII
..............
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
1a
Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
List all of the organization’s
current
officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.
List all of the organization’s
current
key employees, if any. See the instructions for definition of "key employee."
List the organization’s five
current
highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (box 5 of Form W-2, box 6 of Form 1099-MISC, and/or box 1 of Form 1099-NEC) of more than $100,000 from the organization and any related organizations.
List all of the organization’s
former
officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.
List all of the organization’s
former directors or trustees
that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.
See the instructions for the order in which to list the persons above.
Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.
(A)
Name and title
(B)
Average hours per week (list any hours for related organizations below dotted line)
(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee)
(D)
Reportable compensation from the organization (W-2/1099-MISC/1099-NEC)
(E)
Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC)
(F)
Estimated amount of other compensation from the organization and related organizations
(1)
ELLEN CARROLL
......................................................................
SECRETARY
2.00
.................
X
X
0
0
0
(2)
CRAIG GIMBEL
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(3)
ERIC GOLDSTEIN
......................................................................
TREASURER
2.00
.................
X
X
0
0
0
(4)
ERIN ARNOLD
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(5)
ARNOLD M PODOLSKY
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(6)
MARY ANN POLADIAN
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(7)
JILL MILLER
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(8)
MICHAEL PIANIN
......................................................................
BOARD CHAIR
2.00
.................
X
X
0
0
0
(9)
JUDY SMITH
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(10)
JOHN D REVEILLE
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(11)
JAMES ROSENBAUM
......................................................................
DIRECTOR
1.00
.................
X
0
0
0
(12)
PAULA OLSIEWSKI
......................................................................
VICE CHAIR
2.00
.................
X
X
0
0
0
(13)
CASSIE SHAFER
......................................................................
CHIEF EXECUTIVE OFFICER
40.00
.................
X
217,717
0
14,250
(14)
DIANN PETERSON
......................................................................
CHIEF PHILANTHROPY OFFICER
40.00
.................
X
103,811
0
17,669
(15)
RICHARD HOWARD
......................................................................
CHIEF MISSION DELIVERY OFF
40.00
.................
X
118,225
0
16,748
Form
990
(2023)
Page 8
Form 990 (2023)
Page
8
Part VII
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
(continued)
(A)
Name and title
(B)
Average hours per week (list any hours for related organizations below dotted line)
(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee)
(D)
Reportable compensation from the organization (W-2/1099-MISC/1099-NEC)
(E)
Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC)
(F)
Estimated amount of other compensation from the organization and related organizations
1b
Sub-Total
..............
c
Total from continuation sheets to
Part VII
, Section A
..
d
Total (add lines 1b and 1c)
.........
439,753
0
48,667
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization
3
Yes
No
3
Did the organization list any
former
officer, director or trustee, key employee, or highest compensated employee on line 1a?
If "Yes," complete Schedule J for such individual
..............
3
No
4
For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000?
If "Yes," complete Schedule J for such
individual
...........................
4
Yes
5
Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization?
If "Yes," complete Schedule J for such person
........
5
No
Section B. Independent Contractors
1
Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.
(A)
Name and business address
(B)
Description of services
(C)
Compensation
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization
0
Form
990
(2023)
Page 9
Form 990 (2023)
Page
9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this
Part VIII
.............
(A)
Total revenue
(B)
Related or
exempt
function
revenue
(C)
Unrelated
business
revenue
(D)
Revenue
excluded from
tax under sections
512 - 514
1a
Federated campaigns
..
1a
b
Membership dues
..
1b
c
Fundraising events
..
1c
d
Related organizations
1d
e
Government grants (contributions)
1e
f
All other contributions, gifts, grants, and similar amounts not included above
1f
2,545,839
g
Noncash contributions included in lines 1a - 1f:$
1g
h Total.
Add lines 1a-1f
.......
2,545,839
Business Code
2a
PROGRAM REVENUE
611710
12,793
12,793
b
c
d
e
f
All other program service revenue.
g
Total.
Add lines 2a–2f
.....
12,793
3
Investment income (including dividends, interest, and other
similar amounts)
......
222,426
222,426
4
Income from investment of tax-exempt bond proceeds
5
Royalties
...........
(i) Real
(ii) Personal
6a
Gross rents
6a
b
Less: rental expenses
6b
c
Rental income or (loss)
6c
d
Net rental income or (loss)
.......
(i) Securities
(ii) Other
7a
Gross amount from sales of assets other than inventory
7a
200,000
b
Less: cost or other basis and sales expenses
7b
198,188
1,322
c
Gain or (loss)
7c
1,812
-1,322
d
Net gain or (loss)
.........
490
490
8a
Gross income from fundraising events (not including $
of contributions reported on line 1c).
See
Part IV
, line 18
....
8a
b
Less: direct expenses
...
8b
c
Net income or (loss) from fundraising events
..
9a
Gross income from gaming activities.
See
Part IV
, line 19
...
9a
b
Less: direct expenses
...
9b
c
Net income or (loss) from gaming activities
..
10a
Gross sales of inventory, less
returns and allowances
..
10a
b
Less: cost of goods sold
..
10b
c
Net income or (loss) from sales of inventory
..
Business Code
11a
b
c
d
All other revenue
....
e
Total.
Add lines 11a–11d
......
12
Total revenue.
See instructions
.....
2,781,548
12,793
0
222,916
Form
990
(2023)
Page 10
Form 990 (2023)
Page
10
Part IX
Statement of Functional Expenses
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).
Check if Schedule O contains a response or note to any line in this
Part IX
..............
Do not include amounts reported on lines 6b,
7b, 8b, 9b, and 10b of
Part VIII
.
(A)
Total expenses
(B)
Program service
expenses
(C)
Management and
general expenses
(D)
Fundraising
expenses
1
Grants and other assistance to domestic organizations and domestic governments. See
Part IV
, line 21
....
159,178
159,178
2
Grants and other assistance to domestic individuals. See
Part IV
, line 22
...........
3
Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See
Part IV
, lines 15 and 16.
.............
4
Benefits paid to or for members
.......
5
Compensation of current officers, directors, trustees, and key employees
...........
249,822
174,875
49,964
24,983
6
Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B)
.........
7
Other salaries and wages
........
1,086,019
872,977
168,394
44,648
8
Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions)
....
36,652
28,805
5,963
1,884
9
Other employee benefits
.......
117,909
94,137
18,544
5,228
10
Payroll taxes
...........
96,593
73,966
17,194
5,433
11
Fees for services (non-employees):
a
Management
......
b
Legal
.........
c
Accounting
...........
90,311
90,311
d
Lobbying
...........
e
Professional fundraising services.
See
Part IV
, line 17
f
Investment management fees
......
g
Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O)
170,488
158,005
12,483
12
Advertising and promotion
....
13
Office expenses
.......
120,550
83,224
36,353
973
14
Information technology
......
77,887
71,937
3,650
2,300
15
Royalties
..
16
Occupancy
...........
51,816
36,066
12,550
3,200
17
Travel
............
90,864
89,230
1,634
18
Payments of travel or entertainment expenses for any federal, state, or local public officials
.
19
Conferences, conventions, and meetings
....
113,756
113,756
20
Interest
...........
21
Payments to affiliates
.......
22
Depreciation, depletion, and amortization
..
21,520
16,733
3,212
1,575
23
Insurance
...
24
Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a
DESIGN AND PRINTING
71,916
60,981
10,935
b
POSTAGE
53,798
36,973
16,825
c
STATE LICENSING
6,704
6,704
d
e
All other expenses
25
Total functional expenses.
Add lines 1 through 24e
2,615,783
2,077,547
433,895
104,341
26
Joint costs.
Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation.
Check here
if following SOP 98-2 (ASC 958-720).
Form
990
(2023)
Page 11
Form 990 (2023)
Page
11
Part X
Balance Sheet
Check if Schedule O contains a response or note to any line in this
Part IX
..............
(A)
Beginning of year
(B)
End of year
1
Cash–non-interest-bearing
........
350,400
1
266,538
2
Savings and temporary cash investments
.........
7,092,825
2
7,157,125
3
Pledges and grants receivable, net
......
3
4
Accounts receivable, net
.............
4
103,031
5
Loans and other receivables from any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons
.......
5
6
Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), and persons described in section 4958(c)(3)(B)
...
6
7
Notes and loans receivable, net
...........
7
8
Inventories for sale or use
............
8
9
Prepaid expenses and deferred charges
......
25,276
9
20,033
10a
Land, buildings, and equipment: cost or other basis. Complete
Part VI
of Schedule D
10a
44,645
b
Less: accumulated depreciation
10b
30,139
20,136
10c
14,506
11
Investments—publicly traded securities
.
313,090
11
315,825
12
Investments—other securities. See
Part IV
, line 11
.....
12
13
Investments—program-related. See
Part IV
, line 11
..
13
14
Intangible assets
...............
24,657
14
9,862
15
Other assets. See
Part IV
, line 11
...........
3,618
15
198,086
16
Total assets.
Add lines 1 through 15 (must equal line 33)
...
7,830,002
16
8,085,006
17
Accounts payable and accrued expenses
.....
413,366
17
184,796
18
Grants payable
...
18
19
Deferred revenue
.........
19
20
Tax-exempt bond liabilities
.........
20
21
Escrow or custodial account liability.
Complete
Part IV
of Schedule D
21
22
Loans and other payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons
.........
22
23
Secured mortgages and notes payable to unrelated third parties
..
23
24
Unsecured notes and loans payable to unrelated third parties
..
24
25
Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24).
Complete
Part X
of Schedule D
0
25
196,966
26
Total liabilities.
Add lines 17 through 25
..
413,366
26
381,762
Organizations that follow FASB ASC 958,
check here
and complete lines 27, 28, 32, and 33.
27
Net assets without donor restrictions
..........
4,497,313
27
4,642,591
28
Net assets with donor restrictions
...........
2,919,323
28
3,060,653
Organizations that do not follow FASB ASC 958,
check here
and complete lines 29 through 33.
29
Capital stock or trust principal, or current funds
.....
29
30
Paid-in or capital surplus, or land, building or equipment fund
...
30
31
Retained earnings, endowment, accumulated income, or other funds
31
32
Total net assets or fund balances
...........
7,416,636
32
7,703,244
33
Total liabilities and net assets/fund balances
........
7,830,002
33
8,085,006
Form
990
(2023)
Page 12
Form 990 (2023)
Page
12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this
Part XI
..............
1
Total revenue (must equal
Part VIII
, column (A), line 12)
............
1
2,781,548
2
Total expenses (must equal
Part IX
, column (A), line 25)
............
2
2,615,783
3
Revenue less expenses. Subtract line 2 from line 1
..............
3
165,765
4
Net assets or fund balances at beginning of year (must equal
Part X
, line 32, column (A))
..
4
7,416,636
5
Net unrealized gains (losses) on investments
...............
5
120,843
6
Donated services and use of facilities
.................
6
7
Investment expenses
.....................
7
8
Prior period adjustments
.....................
8
9
Other changes in net assets or fund balances (explain in Schedule O)
........
9
0
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal
Part X
, line 32, column (B))
10
7,703,244
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response or note to any line in this
Part XII
.............
Yes
No
1
Accounting method used to prepare the Form 990:
Cash
Accrual
Other
If the organization changed its method of accounting from a prior year or checked "Other," explain on
Schedule O.
2a
Were the organization’s financial statements compiled or reviewed by an independent accountant?
2a
No
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:
Separate basis
Consolidated basis
Both consolidated and separate basis
b
Were the organization’s financial statements audited by an independent accountant?
2b
Yes
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:
Separate basis
Consolidated basis
Both consolidated and separate basis
c
If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight
of the audit, review, or compilation of its financial statements and selection of an independent accountant?
2c
Yes
If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.
3a
As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Uniform Guidance, 2 C.F.R. Part 200, Subpart F?
3a
No
b
If "Yes," did the organization undergo the required audit or audits?
If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.
3b
Form
990
(2023)
Form 990 (2023)
Additional Data
Software ID:
Software Version:
Form 990, Special Condition Description:
Special Condition Description