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Nonprofiteer
← SJOGRENS FOUNDATION INC

Form 990 for tax year 2023

Filed by SJOGRENS FOUNDATION INC.

Totals

Total revenue
$3,497,666
Total expenses
$3,174,412
Contributions and grants received
$2,964,863
Grants paid
$390,313
Program service revenue
$442,631
Investment income
$90,511
Other revenue
-$339
Total assets, end of year
$4,167,805
Total liabilities, end of year
$1,255,608
Net assets or fund balances, end of year
$2,912,197
Program services expenses (Part IX)
$2,769,197
Management and general expenses
$172,247
Fundraising expenses
$232,968
Program service expenses (Part III)
$2,769,197

Program services were 87.2% 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

    $288,711

  • 1f · All other contributions, gifts and grants

    $2,676,152

  • 1g · Noncash contributions included above

    $36,192

  • 2a · Program service revenue: MEMBERSHIP DUES

    total $254,353 · related or exempt $254,353

  • 2b · Program service revenue: CONFERENCE

    total $187,432 · related or exempt $104,682 · excluded $82,750

  • 2c · Program service revenue: NEWSLETTER

    total $846 · related or exempt $846

  • 3 · Investment income

    total $89,055 · excluded $89,055

  • 5 · Royalties

    total $5,314 · excluded $5,314

  • 7a · Gross sales of assets other than inventory

    securities $1,131,343

  • 7b · Less cost or other basis and sales expenses

    securities $1,129,887

  • 7c · Gain or loss

    securities $1,456

  • 7d · Net gain or loss

    total $1,456 · excluded $1,456

  • 8a · Fundraising events: gross income

    $0

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

    $288,711

  • 8b · Fundraising events: direct expenses

    $56,540

  • 8c · Net income from fundraising events

    total -$56,540 · excluded -$56,540

  • 10a · Gross sales of inventory

    $24,738

  • 10b · Cost of goods sold

    $10,745

  • 10c · Net income from sales of inventory

    total $13,993 · related or exempt $13,993

  • 11a · Other revenue: MISCELLANEOUS INCOME

    total $36,894 · related or exempt $36,894

  • 11e · Other revenue, total

    $36,894

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $390,313 · program services $390,313

  • 5 · Compensation of officers, directors and key employees

    total $593,961 · program services $511,875 · management and general $36,410 · fundraising $45,676

  • 7 · Other salaries and wages

    total $881,165 · program services $759,389 · management and general $54,015 · fundraising $67,761

  • 8 · Pension plan contributions

    total $125,537 · program services $108,189 · management and general $7,695 · fundraising $9,653

  • 10 · Payroll taxes

    total $99,127 · program services $85,428 · management and general $6,076 · fundraising $7,623

  • 11b · Fees: legal

    total $5,054 · management and general $5,054

  • 11c · Fees: accounting

    total $32,747 · management and general $32,747

  • 11f · Fees: investment management

    total $7,898 · management and general $7,898

  • 11g · Fees: other

    total $68,285 · program services $62,860 · management and general $2,406 · fundraising $3,019

  • 14 · Information technology

    total $23,866 · program services $20,568 · management and general $1,463 · fundraising $1,835

  • 16 · Occupancy

    total $90,050 · program services $77,606 · management and general $5,519 · fundraising $6,925

  • 17 · Travel

    total $43,581 · program services $43,581

  • 20 · Interest

    total $2,246 · management and general $2,246

  • 22 · Depreciation, depletion and amortization

    total $42,834 · program services $36,911 · management and general $2,629 · fundraising $3,294

  • 23 · Insurance

    total $14,563 · program services $12,551 · management and general $892 · fundraising $1,120

  • 24a · Other expenses: AWARENESS ACTIVITIES

    total $287,953 · program services $287,953 · management and general $0 · fundraising $0

  • 24b · Other expenses: MISCELLANEOUS

    total $113,308 · program services $108,577 · management and general $474 · fundraising $4,257

  • 24c · Other expenses: PRINTING, DUPLICATING,

    total $112,420 · program services $88,771 · management and general $363 · fundraising $23,286

  • 24d · Other expenses: POSTAGE AND DELIVERY

    total $66,962 · program services $54,585 · management and general $452 · fundraising $11,925

  • 24e · All other expenses

    total $172,542 · program services $120,040 · management and general $5,908 · fundraising $46,594

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $226,724 · end of year $697,030

  • 2 · Savings and temporary cash investments

    beginning of year $469,995 · end of year $220,026

  • 4 · Accounts receivable

    beginning of year $13,473 · end of year $223,294

  • 8 · Inventories for sale or use

    beginning of year $13,185 · end of year $17,109

  • 9 · Prepaid expenses and deferred charges

    beginning of year $18,879 · end of year $20,159

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

    $262,407

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

    $212,415

  • 10c · Land, buildings and equipment, net

    beginning of year $77,324 · end of year $49,992

  • 11 · Investments: publicly traded securities

    beginning of year $2,657,226 · end of year $2,833,654

  • 14 · Intangible assets

    beginning of year $23,126 · end of year $9,911

  • 15 · Other assets

    beginning of year $194,345 · end of year $96,630

  • 17 · Accounts payable and accrued expenses

    beginning of year $92,492 · end of year $66,425

  • 18 · Grants payable

    beginning of year $350,150 · end of year $475,000

  • 19 · Deferred revenue

    beginning of year $394,017 · end of year $561,934

  • 25 · Other liabilities

    beginning of year $291,895 · end of year $152,249

  • 27 · Net assets without donor restrictions

    beginning of year $1,564,827 · end of year $1,911,301

  • 28 · Net assets with donor restrictions

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

Mission and programs · 2023

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 MAY 2024. THREE PILOT GRANTS WERE AWARDED AND ONE HIGH IMPACT GRANT AWARDED. THE SJOGREN'S FOUNDATION ALSO AWARDED A DYNAMIC GRANT TO THE UNIVERSITY OF PENNSYLVANIA FOR DEVELOPMENT OF CORE OUTCOMES SET OF DOMAINS FOR SJOGREN'S DISEASE. THE FOUNDATION PAID THE SECOND PAYMENT TO SUPPORT THE FNIH AMP AIM RESEARCH PROJECT ON SJOGREN'S AND AUTOIMMUNE DISEASE, AND THE SECOND PAYMENT OF THE OKLAHOMA MEDICAL RESEARCH FOUNDATION GRANT FOR THE GENOME RESEARCH PROJECT.THE SJOGREN'S FOUNDATION ALSO WORKED CLOSELY WITH MULTIPLE PHARMA COMPANIES TO PREPARE FOR, AND BRING, PHASE 2 AND PHASE 3 MOVED 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 ENGAGED PATIENTS TO ENCOURAGE TRIAL ENROLLMENT, IN ORDER TO HELP BRING THERAPIES TO MARKET.

    Expenses $955,672 · Grants $390,313

  • 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 $236,496 · Revenue $846

  • THE SJOGREN'S FOUNDATION INCREASED PATIENT SUPPORT AND EDUCATION PROGRAMS IN 2024 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 AND CME PROGRAMS FOR SPECIALTIES AND PRIMARY CARE PROVIDERS. IN APRIL 2024, THE FOUNDATION'S WORK TO CHANGE THE DISEASE NAME FROM SJOGREN'S SYNDROME TO SJOGREN'S DISEASE WAS INTERNATIONALLY ADOPTED BY CLINICIANS AND PATIENTS. THIS NOMENCLATURE BETTER REFLECTS CURRENT RESEARCH AND INFORMATION ABOUT THE DISEASE AS WELL AS THE LIVED EXPERIENCE BY PATIENTS. THE FOUNDATION ALSO INCREASED OUR ADVOCACY EFFORTS WITH CENTERS FOR MEDICARE AND MEDICAID AND CONGRESS TO RAISE AWARENESS ABOUT SJOGREN'S. WE SUCCEEDED IN GETTING HOUSE RESOLUTION #1094 PRESENTED IN CONGRESS TO AFFIRM APRIL AS SJOGREN'S AWARENESS MONTH WHICH INCLUDED UPDATED NAME OF THE DISEASE AND CORRECT INFORMATION ABOUT THE SYSTEMIC NATURE OF THE DISEASE AND NEED FOR INCREASED RESEARCH FUNDING. WE CONTINUED TO ADVANCE OUR RELATIONSHIPS WITH CLINICIANS, RESEARCHERS, GOVERNMENT SCIENTISTS, AND CORPORATE SCIENTISTS WHO ARE INTERESTED IN SJOGREN'S.

    Expenses $881,830

  • OTHER PROGRAMS WITHIN THE FOUNDATION INCLUDE STRATEGIC GOVERNANCE PROJECTS, CONFERENCES AND MEETINGS RELATED TO TOPICS RELEVANT TO THOSE WITH SJOGREN'S, AS WELL AS VARIOUS INDUSTRY AND MEMBERSHIP PROJECTS AND SERVICES FOR THOSE WITH SJOGREN'S OR ENTITIES PROVIDING SUPPORT TO THOSE INDIVIDUALS.

    Expenses $695,199 · Revenue $409,922

As filed on the 2023 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

  • Jonathan Morse Msc

    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

  • 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
    $408,361
    From this org
    $384,450
    From related orgs
    $0
    Other
    $23,911
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $309,450
    Bonus
    $75,000
    Other
    $0
    Deferred
    $9,375
    Nontaxable benefits
    $14,536
    Filer's total
    $408,361

  • Katherine Morland Hammitt

    VP OF MEDICAL AND SCIENTIFIC AFFAIRS

    Total calculated
    $185,600
    From this org
    $179,450
    From related orgs
    $0
    Other
    $6,150
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $169,450
    Bonus
    $10,000
    Other
    $0
    Deferred
    $5,175
    Nontaxable benefits
    $975
    Filer's total
    $185,600

  • Ben Basloe

    VP OF PHILANTHROPY AND OPERATIONS

    Total calculated
    $148,207
    From this org
    $127,283
    From related orgs
    $0
    Other
    $20,924
    Hours/week
    40

  • Lane Destro

    DIR OF CORPORATE RELATIONS AND INITIATIVES

    Total calculated
    $123,771
    From this org
    $115,034
    From related orgs
    $0
    Other
    $8,737
    Hours/week
    40

  • Michele Champigny

    VP OF PATIENT SERVICES AND EDUCATION

    Total calculated
    $111,879
    From this org
    $108,863
    From related orgs
    $0
    Other
    $3,016
    Hours/week
    40

  • Matthew Makara

    SR. DIR OF RESEARCH AND SCIENTIFIC AFFAIRS

    Total calculated
    $116,368
    From this org
    $108,211
    From related orgs
    $0
    Other
    $8,157
    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
2023
Filed
4 November 2024
IRS schema version
2023v5.1
Source object
202403109349301220

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