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Nonprofiteer
← IMMUNE DEFICIENCY FOUNDATION

Form 990 for tax year 2024

Filed by IMMUNE DEFICIENCY FOUNDATION.

Totals

Total revenue
$10,131,702
Total expenses
$9,612,798
Contributions and grants received
$9,567,648
Grants paid
$564,056
Program service revenue
$15,870
Investment income
$548,184
Other revenue
$0
Total assets, end of year
$18,802,131
Total liabilities, end of year
$1,362,276
Net assets or fund balances, end of year
$17,439,855
Program services expenses (Part IX)
$7,109,733
Management and general expenses
$1,428,464
Fundraising expenses
$1,074,601
Program service expenses (Part III)
$7,109,733

Program services were 74.0% 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)

    $15,072

  • 1f · All other contributions, gifts and grants

    $9,552,576

  • 1g · Noncash contributions included above

    $25,276

  • 2a · Program service revenue: SURVEY INCOME

    total $15,800 · related or exempt $15,800

  • 2b · Program service revenue: OTHER INCOME

    total $70 · related or exempt $70

  • 3 · Investment income

    total $551,898 · excluded $551,898

  • 7a · Gross sales of assets other than inventory

    securities $10,736,626

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

    securities $10,740,340

  • 7c · Gain or loss

    securities -$3,714

  • 7d · Net gain or loss

    total -$3,714 · excluded -$3,714

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $231,936 · program services $231,936

  • 2 · Grants to domestic individuals

    total $332,120 · program services $332,120

  • 5 · Compensation of officers, directors and key employees

    total $520,074 · program services $262,914 · management and general $223,047 · fundraising $34,113

  • 7 · Other salaries and wages

    total $3,455,322 · program services $2,248,235 · management and general $698,756 · fundraising $508,331

  • 8 · Pension plan contributions

    total $118,438 · program services $71,456 · management and general $31,977 · fundraising $15,005

  • 9 · Other employee benefits

    total $399,742 · program services $240,184 · management and general $109,785 · fundraising $49,773

  • 10 · Payroll taxes

    total $294,189 · program services $188,372 · management and general $63,904 · fundraising $41,913

  • 11b · Fees: legal

    total $24,983 · program services $23,207 · management and general $632 · fundraising $1,144

  • 11c · Fees: accounting

    total $25,340 · program services $23,538 · management and general $641 · fundraising $1,161

  • 11d · Fees: lobbying

    total $230,600 · program services $230,600

  • 11f · Fees: investment management

    total $71,539 · management and general $71,539

  • 11g · Fees: other

    total $493,107 · program services $441,651 · management and general $18,309 · fundraising $33,147

  • 12 · Advertising and promotion

    total $96,089 · program services $84,512 · management and general $3,146 · fundraising $8,431

  • 13 · Office expenses

    total $115,003 · program services $61,634 · management and general $36,008 · fundraising $17,361

  • 14 · Information technology

    total $176,313 · program services $163,777 · management and general $4,461 · fundraising $8,075

  • 16 · Occupancy

    total $103,489 · program services $69,994 · management and general $20,194 · fundraising $13,301

  • 17 · Travel

    total $373,537 · program services $324,713 · management and general $23,902 · fundraising $24,922

  • 19 · Conferences, conventions and meetings

    total $1,750,630 · program services $1,573,383 · management and general $21,457 · fundraising $155,790

  • 22 · Depreciation, depletion and amortization

    total $143,768 · program services $108,436 · management and general $20,541 · fundraising $14,791

  • 23 · Insurance

    total $39,610 · program services $29,404 · management and general $5,585 · fundraising $4,621

  • 24a · Other expenses: DUES & SUBSCRIPTIONS

    total $218,329 · program services $158,311 · management and general $35,050 · fundraising $24,968

  • 24b · Other expenses: BANK FEES

    total $177,280 · program services $115,915 · management and general $30,124 · fundraising $31,241

  • 24c · Other expenses: PRINTING & COPYING

    total $98,013 · program services $51,282 · management and general $312 · fundraising $46,419

  • 24d · Other expenses: POSTAGE & SHIPPING

    total $85,957 · program services $48,363 · management and general $1,457 · fundraising $36,137

  • 24e · All other expenses

    total $37,390 · program services $25,796 · management and general $7,637 · fundraising $3,957

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,346,127 · end of year $1,395,606

  • 2 · Savings and temporary cash investments

    beginning of year $2,374,122 · end of year $2,942,049

  • 3 · Pledges and grants receivable

    beginning of year $79,899 · end of year $83,166

  • 4 · Accounts receivable

    beginning of year $18,506

  • 9 · Prepaid expenses and deferred charges

    beginning of year $281,164 · end of year $218,864

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

    $249,760

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

    $62,522

  • 10c · Land, buildings and equipment, net

    beginning of year $204,524 · end of year $187,238

  • 11 · Investments: publicly traded securities

    beginning of year $11,924,537 · end of year $13,010,733

  • 14 · Intangible assets

    beginning of year $214,663 · end of year $114,192

  • 15 · Other assets

    beginning of year $911,675 · end of year $850,283

  • 17 · Accounts payable and accrued expenses

    beginning of year $308,172 · end of year $298,983

  • 19 · Deferred revenue

    beginning of year $26,695

  • 25 · Other liabilities

    beginning of year $1,103,601 · end of year $1,063,293

  • 27 · Net assets without donor restrictions

    beginning of year $14,001,757 · end of year $16,554,151

  • 28 · Net assets with donor restrictions

    beginning of year $1,914,992 · end of year $885,704

Mission and programs · 2024

Mission

THE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR EVERY PERSON AFFECTED BY PRIMARY IMMUNODEFICIENCY. WE FOSTER A COMMUNITY THAT IS CONNECTED, ENGAGED, AND EMPOWERED THROUGH ADVOCACY, EDUCATION, AND RESEARCH.

Activities or mission (Part I)

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

  • IMMUNE DEFICIENCY FOUNDATION (IDF) PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2024, APPROXIMATELY 30,700 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, IDF GET CONNECTED GROUP MEETINGS, TEEN AND YOUNG ADULT ACTIVITIES AND THE IDF PI CONFERENCE. THERE WERE 997 ATTENDEES AT THE PI CONFERENCE (THE FIRST IN-PERSON PI CONFERENCE SINCE 2019), WHERE IDF DEBUTED OUR DOCUMENTARY, "COMPROMISED: LIFE WITHOUT IMMUNITY". IDF PROVIDED MORE THAN 265 HOTEL ROOM AND FLIGHT SCHOLARSHIPS FOR PI CONFERENCE ATTENDEES. MORE THAN 1.3 MILLION IDF WEBSITE SESSIONS WERE ACCESSED FOR INFORMATION, EVENTS, PODCASTS AND SUPPORT AND MORE THAN 625 IMMUNE SYSTEM SELF- ASSESSMENTS WERE SUBMITTED VIA THE WEBSITE.

    Expenses $4,918,677 · Grants $318,142

  • THE PI COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING MORE ABOUT THEIR DIAGNOSIS. IDF'S PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 1,900 QUESTIONS ON 300 DIFFERENT TOPICS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2024, 850 INDIVIDUALS MET WITH AND SENT MORE THAN 2,700 LETTERS AND MESSAGES TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE.

    Expenses $1,143,977

  • TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, IDF HAS SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING EXHIBITING AT TEN MEDICAL CONFERENCES IN 2024, PROVIDING INFORMATION AND RESOURCES TO HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS 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 IMMUNODEFICIENCY. IN 2024, OVER 1,000 INDIVIDUALS PARTICIPATED IN AN IDF PATIENT SURVEY TO GATHER DATA ON IG TREATMENT. THERE WERE FOUR PUBLICATIONS IN 2024 USING USIDNET DATA. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2024, TOTALING OVER 159,000.

    Expenses $1,047,079 · Grants $245,914 · Revenue $15,800

  • Revenue $70

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

Listed in Part VII

  • Jorey Berry

    PRESIDENT &

    Total calculated
    $347,267
    From this org
    $291,976
    From related orgs
    $0
    Other
    $55,291
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $245,156
    Bonus
    $46,820
    Other
    not reported
    Deferred
    $35,276
    Nontaxable benefits
    $20,015
    Filer's total
    $347,267
  • Aimee Simpson

    VP INSTITUTI

    Total calculated
    $177,935
    From this org
    $157,876
    From related orgs
    $0
    Other
    $20,059
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $153,492
    Bonus
    $4,384
    Other
    not reported
    Deferred
    $6,290
    Nontaxable benefits
    $13,769
    Filer's total
    $177,935
  • Sarah Rose

    CFO

    Total calculated
    $172,807
    From this org
    $147,965
    From related orgs
    $0
    Other
    $24,842
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $143,581
    Bonus
    $4,384
    Other
    not reported
    Deferred
    $6,060
    Nontaxable benefits
    $18,782
    Filer's total
    $172,807
  • Brian Lloyd

    CTO

    Total calculated
    $172,587
    From this org
    $143,863
    From related orgs
    $0
    Other
    $28,724
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $139,589
    Bonus
    $4,274
    Other
    not reported
    Deferred
    $5,860
    Nontaxable benefits
    $22,864
    Filer's total
    $172,587
  • Tammy Black

    VP COMMUNICA

    Total calculated
    $170,734
    From this org
    $151,684
    From related orgs
    $0
    Other
    $19,050
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $147,371
    Bonus
    $4,313
    Other
    not reported
    Deferred
    $5,977
    Nontaxable benefits
    $13,073
    Filer's total
    $170,734
  • Lynn Albizo

    VP PUBLIC PO

    Total calculated
    $165,587
    From this org
    $142,625
    From related orgs
    $0
    Other
    $22,962
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $138,545
    Bonus
    $4,080
    Other
    not reported
    Deferred
    $5,690
    Nontaxable benefits
    $17,272
    Filer's total
    $165,587
  • Christopher Duckett

    DIRECTOR OF

    Total calculated
    $156,337
    From this org
    $126,700
    From related orgs
    $0
    Other
    $29,637
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $122,831
    Bonus
    $3,869
    Other
    not reported
    Deferred
    $5,289
    Nontaxable benefits
    $24,348
    Filer's total
    $156,337
  • Jason Angelos

    FINANCE CHAI

    Total calculated
    $0
    Hours/week
    1
  • Pete Atherton

    FUTURES CHAI

    Total calculated
    $0
    Hours/week
    1
  • Colleen Dansereau

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1
  • Charlene Grabowski

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1
  • Seth Kaufman

    BOARD VICE C

    Total calculated
    $0
    Hours/week
    1
  • Kate Sullivan MD

    MAC CHAIR

    Total calculated
    $0
    Hours/week
    1
  • Adrian Mollo

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1
  • Andy Robins

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1
  • Stella Safo

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1
  • Tracy A Shaw

    BOARD CHAIR

    Total calculated
    $0
    Hours/week
    1
  • Sonia Vohnout

    BOARD SECRET

    Total calculated
    $0
    Hours/week
    1
  • Peter Wang

    TRUSTEE

    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 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 4b · Supplemental nonqualified retirement plan

Answered no

  • 4a · Severance or change-of-control payment
  • 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

The filer's explanations (Part III)

SCHEDULE J, PART III
AT PRESENT, ONLY THE CEO PARTICIPATES IN THE NONQUALIFIED DEFERRED COMPENSATION PLAN. ELIGIBILITY MAY BE EXTENDED TO OTHER MANAGEMENT OR HIGHLY COMPENSATED EMPLOYEES. THE ELIGIBLE EMPLOYEE(S) WOULD BE DETERMINED BY THE BOARD OR A COMMITTEE OF THE BOARD IN CONJUNCTION WITH THE PRESIDENT/CEO. THE POTENTIAL CONTRIBUTION AMOUNT IS DETERMIEND JUST PRIOR TO EACH BUDGET YEAR BY THE BOARD/BOARD COMMITTEE AND VOTED ON WITHIN THE BUDGET APPROVAL. AT THE END OF THAT YEAR, THE BOARD OR COMMITTEE DETERMINES THE EXACT AMOUNT TO ALLOW AND THAT AMOUNT IS TRANSFERRED TO THE PARTICIPANT'S ACCOUNT SHORTLY THEREAFTER.

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
26 June 2025
IRS schema version
2024v5.0
Source object
202531899349301003

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