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Nonprofiteer
← IMMUNE DEFICIENCY FOUNDATION

Form 990 for tax year 2022

Filed by IMMUNE DEFICIENCY FOUNDATION.

Totals

Total revenue
$8,852,448
Total expenses
$7,936,471
Contributions and grants received
$8,654,145
Grants paid
$158,570
Program service revenue
$68,746
Investment income
$129,557
Other revenue
$0
Total assets, end of year
$14,567,941
Total liabilities, end of year
$1,525,931
Net assets or fund balances, end of year
$13,042,010
Program services expenses (Part IX)
$5,465,418
Management and general expenses
$1,314,953
Fundraising expenses
$1,156,100
Program service expenses (Part III)
$5,465,418

Program services were 68.9% 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.

  • 1e · Government grants (contributions)

    $976,335

  • 1f · All other contributions, gifts and grants

    $7,677,810

  • 2a · Program service revenue: SURVEY INCOME

    total $55,545 · related or exempt $55,545

  • 2b · Program service revenue: OTHER INCOME

    total $13,201 · related or exempt $13,201

  • 3 · Investment income

    total $299,863 · excluded $299,863

  • 7a · Gross sales of assets other than inventory

    securities $8,511,426

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

    securities $8,641,048 · other assets $40,684

  • 7c · Gain or loss

    securities -$129,622 · other assets -$40,684

  • 7d · Net gain or loss

    total -$170,306 · excluded -$170,306

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $135,763 · program services $135,763

  • 2 · Grants to domestic individuals

    total $22,807 · program services $22,807

  • 5 · Compensation of officers, directors and key employees

    total $402,903 · program services $169,983 · management and general $198,256 · fundraising $34,664

  • 7 · Other salaries and wages

    total $3,161,073 · program services $1,981,879 · management and general $622,440 · fundraising $556,754

  • 8 · Pension plan contributions

    total $95,977 · program services $54,475 · management and general $28,898 · fundraising $12,604

  • 9 · Other employee benefits

    total $347,830 · program services $213,900 · management and general $75,468 · fundraising $58,462

  • 10 · Payroll taxes

    total $275,948 · program services $169,748 · management and general $58,214 · fundraising $47,986

  • 11b · Fees: legal

    total $68,935 · program services $46,248 · management and general $15,927 · fundraising $6,760

  • 11c · Fees: accounting

    total $21,886 · program services $14,823 · management and general $4,338 · fundraising $2,725

  • 11d · Fees: lobbying

    total $331,175 · program services $331,175

  • 11f · Fees: investment management

    total $64,722 · management and general $64,722

  • 11g · Fees: other

    total $1,084,149 · program services $1,040,195 · management and general $19,794 · fundraising $24,160

  • 12 · Advertising and promotion

    total $52,717 · program services $51,898 · fundraising $819

  • 13 · Office expenses

    total $97,539 · program services $43,868 · management and general $3,351 · fundraising $50,320

  • 14 · Information technology

    total $265,823 · program services $197,275 · management and general $28,427 · fundraising $40,121

  • 16 · Occupancy

    total $267,438 · program services $174,657 · management and general $60,676 · fundraising $32,105

  • 17 · Travel

    total $98,794 · program services $70,294 · management and general $4,916 · fundraising $23,584

  • 19 · Conferences, conventions and meetings

    total $386,048 · program services $248,382 · management and general $17,448 · fundraising $120,218

  • 20 · Interest

    total $1,604 · management and general $1,604

  • 22 · Depreciation, depletion and amortization

    total $149,207 · program services $101,058 · management and general $29,573 · fundraising $18,576

  • 23 · Insurance

    total $38,221 · program services $27,455 · management and general $6,228 · fundraising $4,538

  • 24a · Other expenses: DUES & SUBSCRIPTIONS

    total $183,938 · program services $144,524 · management and general $26,040 · fundraising $13,374

  • 24b · Other expenses: SUPPLIES

    total $176,127 · program services $109,079 · management and general $13,561 · fundraising $53,487

  • 24c · Other expenses: BANK FEES

    total $63,098 · program services $24,295 · management and general $6,457 · fundraising $32,346

  • 24d · Other expenses: TELEPHONE

    total $62,715 · program services $38,820 · management and general $15,158 · fundraising $8,737

  • 24e · All other expenses

    total $80,034 · program services $52,817 · management and general $13,457 · fundraising $13,760

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $689,372 · end of year $1,250,364

  • 2 · Savings and temporary cash investments

    beginning of year $1,849,442 · end of year $1,536,582

  • 3 · Pledges and grants receivable

    end of year $58,271

  • 4 · Accounts receivable

    beginning of year $430,471 · end of year $8,920

  • 9 · Prepaid expenses and deferred charges

    beginning of year $167,228 · end of year $188,115

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

    $241,538

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

    $31,001

  • 10c · Land, buildings and equipment, net

    beginning of year $70,590 · end of year $210,537

  • 11 · Investments: publicly traded securities

    beginning of year $10,801,889 · end of year $10,175,769

  • 14 · Intangible assets

    beginning of year $278,235 · end of year $196,186

  • 15 · Other assets

    end of year $943,197

  • 17 · Accounts payable and accrued expenses

    beginning of year $404,082 · end of year $306,894

  • 19 · Deferred revenue

    beginning of year $19,864 · end of year $63,962

  • 25 · Other liabilities

    beginning of year $20,830 · end of year $1,155,075

  • 27 · Net assets without donor restrictions

    beginning of year $13,249,405 · end of year $11,721,888

  • 28 · Net assets with donor restrictions

    beginning of year $593,046 · end of year $1,320,122

Mission and programs · 2022

Mission

THE IMMUNE DEFICIENCY FOUNDATION (IDF) IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH. IDF SEEKS TO ENSURE THAT EVERYONE IN THE U.S. AFFECTED BY PI HAS A FULLY INFORMED UNDERSTANDING OF THE PI DIAGNOSIS THAT AFFECTS THEM, ALL AVAILABLE TREATMENT OPTIONS, THE EXPECTED STANDARD OF CARE, AND ALL OF THEIR OPPORTUNITIES FOR CONNECTION AND SUPPORT WITHIN THE PI COMMUNITY.

Activities or mission (Part I)

THE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITIY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH.

  • IDF PROVIDED EDUCATIONAL PROGRAMS FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2022, APPROXIMATELY 7,798 INDIVIDUALS ATTENDED MORE THAN 335 PRESENTATIONS. THESE INCLUDED IDF FORUMS AND EDUCATION MEETINGS, IDF GET CONNECTED GROUP MEETINGS, TEEN AND YOUNG ADULT ACTIVITIES, THE IDF PI CONFERENCE AND SCID COMPASS SUMMIT. MORE THAN 103,209 IDF EDUCATIONAL MATERIALS WERE DISTRIBUTED AND 881,747 USERS ACCESSED THE IDF WEBSITE FOR INFORMATION AND SUPPORT.

    Expenses $2,591,621 · Grants $16,450

  • THE PRIMARY IMMUNODEFICIENCY COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE TO ANSWER INSURANCE QUESTIONS, LOCATE A SPECIALIST IN THEIR AREA, FIND INFORMATION ABOUT TREATMENT, AND LEARN MORE ABOUT THEIR DIAGNOSIS. IDF'S PATIENT ADVOCACY SPECIALISTS FULFILLED INFORMATION REQUESTS FROM MORE THAN 1,453 INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE REGARDING OVER 1,890 TOPICS. IDF WORKS THROUGHOUT THE YEAR AT THE FEDERAL AND STATE LEVEL TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THE PI COMMUNITY. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK WORKS TO EDUCATE POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2022 IDF SUCCEEDED IN SECURING A PERMANENT MEDICARE BENEFIT FOR THOUSANDS OF PI PATIENTS TO RECEIVE HOME IVIG AFTER TEN YEARS OF LEGISLATIVE ADVOCACY. AT IDF ADVOCACY DAY, 240 INDIVIDUALS MET WITH AND SENT MESSAGES TO MEMBERS OF CONGRESS TO ENSURE THAT PEOPLE WITH PI ARE ABLE TO LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE.

    Expenses $1,078,922

  • IN AN EFFORT TO IMPROVE THE DIAGNOSIS, TREATMENT, AND CARE OF THOSE AFFECTED BY PI, IDF HAS SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING EXHIBITING AT 7 MEDICAL CONFERENCES, PROVIDING INFORMATION AND RESOURCES TO OVER 590 MEDICAL PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS PHYSICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST ABOUT PATIENT-SPECIFIC QUESTIONS TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IDF CONDUCTS NATIONAL SURVEYS AND FOCUS GROUPS OF PATIENTS, PHYSICIANS, AND OTHER HEALTHCARE PROFESSIONALS, BUILDING A COLLECTION OF QUANTIFIABLE DATA RELATED TO PRIMARY IMMUNODEFICIENCIES. IN 2022, THERE WERE 4 ABSTRACTS ACCEPTED AND FEATURED AT NATIONAL MEDICAL CONFERENCES AND 10 MANUSCRIPTS PUBLISHED IN PEER REVIEW SCIENTIFIC JOURNALS, ALL USING USIDNET DATA. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED 4 RESEARCH GRANTS IN 2022 TOTALING OVER 140,000.

    Expenses $950,377 · Grants $139,020 · Revenue $55,545

  • OTHER SERVICES TO PATIENTS AND FAMILIES

    Expenses $844,498 · Grants $3,100 · Revenue $13,201

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Jorey Berry

    PRESIDENT &

    Total calculated
    $243,144
    From this org
    $215,354
    From related orgs
    $0
    Other
    $27,790
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $215,354
    Bonus
    not reported
    Other
    not reported
    Deferred
    $6,636
    Nontaxable benefits
    $21,154
    Filer's total
    $243,144

  • Sarah Rose

    CFO

    Total calculated
    $159,758
    From this org
    $134,904
    From related orgs
    $0
    Other
    $24,854
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $134,904
    Bonus
    not reported
    Other
    not reported
    Deferred
    $5,648
    Nontaxable benefits
    $19,206
    Filer's total
    $159,758

  • Tammy Black

    VP COMMUNICA

    Total calculated
    $149,911
    From this org
    $134,742
    From related orgs
    $0
    Other
    $15,169
    Hours/week
    40

  • Aimee Simpson

    VP INSTITUTI

    Total calculated
    $146,405
    From this org
    $132,431
    From related orgs
    $0
    Other
    $13,974
    Hours/week
    40

  • Lynn Albizo

    VP PUBLIC PO

    Total calculated
    $145,228
    From this org
    $121,346
    From related orgs
    $0
    Other
    $23,882
    Hours/week
    40

  • Kathy Antilla

    VP EDUCATION

    Total calculated
    $139,655
    From this org
    $117,495
    From related orgs
    $0
    Other
    $22,160
    Hours/week
    40

  • Christopher Duckett

    DIR OF TALEN

    Total calculated
    $137,850
    From this org
    $109,265
    From related orgs
    $0
    Other
    $28,585
    Hours/week
    40

  • Jason Angelos

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1

  • Pete Atherton

    SEROC CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Joel Buckberg

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • Steve Fietek

    FINANCE CHAI

    Total calculated
    $0
    Hours/week
    1

  • Terry Halper

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1

  • Seth Kaufman

    DEVELOPMENT

    Total calculated
    $0
    Hours/week
    1

  • Kate Sullivan MD

    MAC VICE-CHA

    Total calculated
    $0
    Hours/week
    1

  • Rebecca Buckley MD

    MAC CHAIR

    Total calculated
    $0
    Hours/week
    1

  • John Seymour PhD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1

  • Tracy A Shaw

    BOARD CHAIR

    Total calculated
    $0
    Hours/week
    1

  • John Smith

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1

  • Harper Spero

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1

  • Sonia Vohnout

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

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 · 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
2022
Filed
24 May 2023
IRS schema version
2022v5.0
Source object
202321649349300922

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