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← SJOGRENS FOUNDATION INC

Form 990 for tax year 2024

Filed by SJOGRENS FOUNDATION INC.

Totals

Total revenue
$5,277,586
Total expenses
$4,223,979
Contributions and grants received
$4,712,138
Grants paid
$636,789
Program service revenue
$502,889
Investment income
$143,224
Other revenue
-$80,665
Total assets, end of year
$5,240,223
Total liabilities, end of year
$1,212,835
Net assets or fund balances, end of year
$4,027,388
Program services expenses (Part IX)
$3,551,082
Management and general expenses
$203,642
Fundraising expenses
$469,255
Program service expenses (Part III)
$3,551,082

Program services were 84.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $288,158

  • 1f · All other contributions, gifts and grants

    $4,423,980

  • 2a · Program service revenue: CONFERENCE

    total $254,806 · related or exempt $143,056 · excluded $111,750

  • 2b · Program service revenue: MEMBERSHIP DUES

    total $244,333 · related or exempt $244,333

  • 2c · Program service revenue: NEWSLETTER

    total $3,750 · related or exempt $3,750

  • 3 · Investment income

    total $143,224 · excluded $143,224

  • 5 · Royalties

    total $3,492 · excluded $3,492

  • 8a · Fundraising events: gross income

    $0

  • 8a · Fundraising events: contributions included on line 1c

    $288,158

  • 8b · Fundraising events: direct expenses

    $88,528

  • 8c · Net income from fundraising events

    total -$88,528 · excluded -$88,528

  • 10a · Gross sales of inventory

    $13,798

  • 10b · Cost of goods sold

    $16,459

  • 10c · Net income from sales of inventory

    total -$2,661 · related or exempt -$2,661

  • 11a · Other revenue: MISCELLANEOUS INCOME

    total $7,032 · related or exempt $7,032

  • 11e · Other revenue, total

    $7,032

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $636,789 · program services $636,789

  • 5 · Compensation of officers, directors and key employees

    total $556,072 · program services $454,644 · management and general $36,589 · fundraising $64,839

  • 7 · Other salaries and wages

    total $1,096,498 · program services $896,498 · management and general $72,149 · fundraising $127,851

  • 9 · Other employee benefits

    total $170,731 · program services $139,589 · management and general $11,234 · fundraising $19,908

  • 10 · Payroll taxes

    total $114,430 · program services $93,558 · management and general $7,529 · fundraising $13,343

  • 11b · Fees: legal

    total $107,958 · program services $107,958

  • 11c · Fees: accounting

    total $34,804 · management and general $34,804

  • 11f · Fees: investment management

    total $8,840 · management and general $8,840

  • 11g · Fees: other

    total $155,999 · program services $133,363 · management and general $8,167 · fundraising $14,469

  • 14 · Information technology

    total $33,008 · program services $26,988 · management and general $2,171 · fundraising $3,849

  • 16 · Occupancy

    total $102,392 · program services $83,716 · management and general $6,737 · fundraising $11,939

  • 17 · Travel

    total $36,655 · program services $36,655

  • 20 · Interest

    total $2,027 · program services $1,894 · management and general $133

  • 22 · Depreciation, depletion and amortization

    total $37,608 · program services $30,751 · management and general $2,472 · fundraising $4,385

  • 23 · Insurance

    total $11,412 · program services $9,330 · management and general $751 · fundraising $1,331

  • 24a · Other expenses: AWARENESS ACTIVITIES

    total $493,629 · program services $493,629

  • 24b · Other expenses: MISCELLANEOUS

    total $156,546 · program services $59,072 · management and general $162 · fundraising $97,312

  • 24c · Other expenses: TECH, MAINT, REPAIRS

    total $125,980 · program services $103,000 · management and general $8,291 · fundraising $14,689

  • 24d · Other expenses: POSTAGE AND DELIVERY

    total $103,690 · program services $63,038 · management and general $96 · fundraising $40,556

  • 24e · All other expenses

    total $238,911 · program services $180,610 · management and general $3,517 · fundraising $54,784

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $697,030 · end of year $253,748

  • 2 · Savings and temporary cash investments

    beginning of year $220,026 · end of year $220,214

  • 4 · Accounts receivable

    beginning of year $223,294 · end of year $3,213

  • 8 · Inventories for sale or use

    beginning of year $17,109 · end of year $12,193

  • 9 · Prepaid expenses and deferred charges

    beginning of year $20,159 · end of year $0

  • 10a · Land, buildings and equipment: cost or other basis

    $260,120

  • 10b · Land, buildings and equipment: accumulated depreciation

    $239,985

  • 10c · Land, buildings and equipment, net

    beginning of year $49,992 · end of year $20,135

  • 11 · Investments: publicly traded securities

    beginning of year $2,833,654 · end of year $4,600,242

  • 14 · Intangible assets

    beginning of year $9,911 · end of year $0

  • 15 · Other assets

    beginning of year $96,630 · end of year $130,478

  • 17 · Accounts payable and accrued expenses

    beginning of year $66,425 · end of year $50,778

  • 18 · Grants payable

    beginning of year $475,000 · end of year $526,250

  • 19 · Deferred revenue

    beginning of year $561,934 · end of year $483,753

  • 25 · Other liabilities

    beginning of year $152,249 · end of year $152,054

  • 27 · Net assets without donor restrictions

    beginning of year $1,911,301 · end of year $2,926,653

  • 28 · Net assets with donor restrictions

    beginning of year $1,000,896 · end of year $1,100,735

Mission and programs · 2024

Mission

THE FOUNDATION'S MISSION IS TO PROVIDE EDUCATION AND RESOURCES TO SJOGREN'S PATIENTS AND THEIR LOVED ONES, PROVIDE CREDIBLE RESOURCES/EDUCATION TO HEALTHCARE PROFESSIONALS, SERVE AS THE VOICE OF ALL PATIENTS THROUGH ADVOCACY AND FUND INNOVATIVE RESEARCH.

Activities or mission (Part I)

SEE SCHEDULE O FOR DESCRIPTION OF ORGANIZATION'S PRIMARY MISSION.

  • THE SJOGREN'S FOUNDATION AWARDED FOUR RESEARCH GRANTS UNDER THE ANNUAL SJOGREN'S FOUNDATION GRANT PROGRAM TO UNIVERSITY AFFILIATED RESEARCHERS IN JUNE 2025. THREE PILOT GRANTS WERE AWARDED AND ONE HIGH IMPACT GRANT AWARDED. THE SJOGREN'S FOUNDATION ALSO AWARDED A DYNAMIC GRANT TO THE UNIVERSITY OF UTAH FOR DEVELOPMENT OF INTERNATIONAL CLASSIFICATION CRITERIA FOR CHILDREN WITH SJOGREN'S DISEASE. THE FOUNDATION PAID THE THIRD PAYMENT TO SUPPORT THE FOUNDATION FOR THE NIH AMP AIM RESEARCH PROJECT ON SJOGREN'S AND OTHER AUTOIMMUNE DISEASES, AND THE FIRST PAYMENT OF THE NEW FOUNDATION FOR THE NIH SJOGREN'S BIOMARKERS CONSORTIUM PROJECT TO DISCOVER NEW BIOMARKERS FOR SJOGREN'S TO AID IN IMPROVED DIAGNOSIS AND TREATMENT.THE SJOGREN'S FOUNDATION ALSO WORKED CLOSELY WITH MULTIPLE PHARMA COMPANIES TO PREPARE FOR, AND BRING, PHASE 2 AND PHASE 3 CLINICAL TRIALS FORWARD. THE FOUNDATION SUPPORTED THESE PROGRAMS BY CONFERRING WITH PHARMA ON PROTOCOLS AND PATIENT NEEDS, CERTIFYING CLINICAL TRIAL INVESTIGATORS ON PROPER USE OF ESSDAI OUTCOME MEASURES, AND ENGAGING PATIENTS TO ENCOURAGE TRIAL ENROLLMENT, IN ORDER TO HELP BRING THERAPIES TO MARKET.

    Expenses $1,227,774 · Grants $636,789

  • NEWSLETTER - THE FOUNDATION PRODUCES TWO NEWSLETTERS. "CONQUERING SJOGREN'S" IS A PATIENT FOCUSED NEWSLETTER WITH INFORMATION ABOUT SJOGREN'S AND ITS MANY MANIFESTATIONS. CS IS PRODUCED BI-MONTHLY. THE "SJOGREN'S QUARTERLY" IS A PROFESSIONAL PUBLICATION PRODUCED 4 TIMES A YEAR AND OFFERED FREE TO ALL HEALTHCARE PROFESSIONALS TO INCREASE AWARENESS AND EDUCATION AROUND SJOGREN'S.

    Expenses $254,954

  • THE SJOGREN'S FOUNDATION INCREASED PATIENT SUPPORT AND EDUCATION PROGRAMS IN 2025 AS WELL AS HEALTHCARE PROVIDER EDUCATION AND AWARENESS ABOUT SJOGREN'S AND THE SYSTEMIC, MULTI-FACETED NATURE OF THE DISEASE. OF NOTE WAS THE EXPANSION OF PROVIDER OUTREACH THROUGH STATE OF SJOGREN'S AND THE FOUNDATION'S CME PROGRAM AS WELL AS PARTNERING WITH EXTERNAL CME PROGRAMS FOR SPECIALTIES AND PRIMARY CARE PROVIDERS. THE FOUNDATION ALSO INCREASED OUR ADVOCACY EFFORTS TO HIGHLIGHT THE IMPORTANCE OF CONTINUED AUTOIMMUNE DISEASE RESEARCH FUNDING, ESPECIALLY FOR SJOGREN'S AND TO HIGHLIGHT THE IMPORTANCE OF SUPPORTING THE OFFICE OF AUTOIMMUNE DISEASE RESEARCH. WE SUCCEEDED IN GETTING A NEW HOUSE RESOLUTION #245 TO AFFIRM APRIL AS SJOGREN'S AWARENESS MONTH WHICH INCLUDED MESSAGING ABOUT THE NEED FOR MORE RESEARCH AND WE HELD OUR FIRST CONGRESSIONAL BRIEFING ON SJOGREN'S. THE FOUNDATION ALSO CONTINUED OUR DIALOG WITH CENTERS FOR MEDICARE AND MEDICAID FOR DENTAL COVERAGE. WE CONTINUED TO ADVANCE OUR RELATIONSHIPS WITH CLINICIANS, RESEARCHERS, GOVERNMENT SCIENTISTS, AND CORPORATE SCIENTISTS WHO ARE INTERESTED IN SJOGREN'S. IN JUNE 2025, THE FOUNDATION WORK TO CHANGE THE DISEASE NAME FROM SJOGREN'S SYNDROME TO SJOGREN'S DISEASE WAS INTERNATIONALLY CONFIRMED BY THE PUBLICATION OF THE INITIATIVE IN A PEER-REVIEWED PUBLICATION NATURE REVIEWS RHEUMATOLOGY.

    Expenses $1,216,516

  • OTHER PROGRAMS WITHIN THE FOUNDATION INCLUDE STRATEGIC GOVERNANCE PROJECTS; PATIENT MEMBERSHIP AND SUPPORT PROGRAMS FOR PEOPLE LIVING WITH SJOGREN'S; HEALTHCARE PROVIDER EDUCATION SUCH AS CREATING CLINICAL PRACTICE GUIDELINES AND ABSTRACTS, PARTNERING WITH EXTERNAL CME PROVIDERS TO CREATE SJOGREN'S COURSES, AND PRESENTING AT PROFESSIONAL CONFERENCES; INDUSTRY SUPPORT AND CO-AUTHORSHIP ON ABSTRACTS TO ENSURE ACCURATE UNDERSTANDING OF SJOGREN'S AND THE NEED FOR EARLY PATIENT INVOLVEMENT IN RESEARCH AND ENCOURAGING FURTHER DEVELOPMENT OF SJOGREN'S THERAPIES FOR ALL PATIENTS.

    Expenses $851,838 · Revenue $395,510

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Susan Barajas

    CHAIRMAN

    Total calculated
    $0
    Hours/week
    2

  • Donald E Thomas MD

    PAST CHAIRMAN

    Total calculated
    $0
    Hours/week
    2

  • Vidya Sankar DMD Mhs

    TREASURER

    Total calculated
    $0
    Hours/week
    2

  • Katie Forte

    SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • Alan Baer MD

    DIRECTOR, CHAIRMAN OF MSAC

    Total calculated
    $0
    Hours/week
    2

  • Allissa Latham

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Brent P Goodman MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Daniel Wallace MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • David Schrader

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Nishant Gupta MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Robyn Laukien

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Rubenstein Lisa

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Sara McCoy MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Scott Lieberman MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Tammy Dotson

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Tom Iatesta

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Vatinee Bunya MD Msce

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Janet Church

    PRESIDENT AND CEO

    Total calculated
    $368,360
    From this org
    $368,360
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $321,800
    Bonus
    $46,560
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $368,360

  • Katherine Morland Hammitt

    VP OF MEDICAL AND SCIENTIFIC AFFAIRS

    Total calculated
    $189,280
    From this org
    $189,280
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $177,640
    Bonus
    $11,640
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $189,280

  • Ben Basloe

    VP OF PHILANTHROPY AND OPERATIONS

    Total calculated
    $135,085
    From this org
    $135,085
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Lane Destro

    SR. DIRECTOR, CORPORATE PARTNERSHIPS & STRATEGIC I

    Total calculated
    $125,368
    From this org
    $125,368
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Michele Champigny

    VP OF PATIENT SERVICES AND EDUCATION

    Total calculated
    $115,761
    From this org
    $115,761
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Matthew Makara

    SENIOR DIRECTOR OF RESEARCH & SCIENTIFIC AFFAIRS

    Total calculated
    $114,253
    From this org
    $114,253
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Compensation committee
  • 3 · Form 990 of other organizations
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Provenance

Return type
form_990
Tax year
2024
Filed
10 November 2025
IRS schema version
2024v5.2
Source object
202503149349305055

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