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Nonprofiteer
← IMMUNE DEFICIENCY FOUNDATION

Form 990 for tax year 2025

Filed by IMMUNE DEFICIENCY FOUNDATION.

Totals

Total revenue
$11,404,598
Total expenses
$8,377,069
Contributions and grants received
$10,651,366
Grants paid
$609,595
Program service revenue
$45,656
Investment income
$707,576
Other revenue
$0
Total assets, end of year
$23,311,148
Total liabilities, end of year
$1,453,460
Net assets or fund balances, end of year
$21,857,688
Program services expenses (Part IX)
$5,868,684
Management and general expenses
$1,544,964
Fundraising expenses
$963,421
Program service expenses (Part III)
$5,868,684

Program services were 70.1% 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.

  • 1f · All other contributions, gifts and grants

    $10,651,366

  • 1g · Noncash contributions included above

    $23,021

  • 2a · Program service revenue: SURVEY INCOME

    total $38,600 · related or exempt $38,600

  • 2b · Program service revenue: OTHER INCOME

    total $7,056 · related or exempt $7,056

  • 3 · Investment income

    total $535,773 · excluded $535,773

  • 7a · Gross sales of assets other than inventory

    securities $6,328,923

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

    securities $6,157,120

  • 7c · Gain or loss

    securities $171,803

  • 7d · Net gain or loss

    total $171,803 · excluded $171,803

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $266,814 · program services $266,814

  • 2 · Grants to domestic individuals

    total $342,781 · program services $342,781

  • 5 · Compensation of officers, directors and key employees

    total $573,837 · program services $319,236 · management and general $214,730 · fundraising $39,871

  • 7 · Other salaries and wages

    total $3,581,698 · program services $2,351,717 · management and general $762,660 · fundraising $467,321

  • 8 · Pension plan contributions

    total $126,505 · program services $79,736 · management and general $35,851 · fundraising $10,918

  • 9 · Other employee benefits

    total $410,366 · program services $257,676 · management and general $117,593 · fundraising $35,097

  • 10 · Payroll taxes

    total $310,736 · program services $202,123 · management and general $69,411 · fundraising $39,202

  • 11b · Fees: legal

    total $11,614 · program services $9,929 · management and general $925 · fundraising $760

  • 11c · Fees: accounting

    total $25,927 · program services $22,165 · management and general $2,064 · fundraising $1,698

  • 11d · Fees: lobbying

    total $245,600 · program services $245,600

  • 11f · Fees: investment management

    total $84,954 · management and general $84,954

  • 11g · Fees: other

    total $636,325 · program services $508,345 · management and general $70,228 · fundraising $57,752

  • 12 · Advertising and promotion

    total $17,574 · program services $5,678 · fundraising $11,896

  • 13 · Office expenses

    total $83,601 · program services $50,779 · management and general $21,342 · fundraising $11,480

  • 14 · Information technology

    total $161,248 · program services $137,849 · management and general $12,840 · fundraising $10,559

  • 16 · Occupancy

    total $101,519 · program services $66,045 · management and general $20,525 · fundraising $14,949

  • 17 · Travel

    total $199,167 · program services $166,498 · management and general $17,717 · fundraising $14,952

  • 19 · Conferences, conventions and meetings

    total $417,432 · program services $303,508 · management and general $20,856 · fundraising $93,068

  • 22 · Depreciation, depletion and amortization

    total $91,398 · program services $70,847 · management and general $11,950 · fundraising $8,601

  • 23 · Insurance

    total $40,094 · program services $29,098 · management and general $5,802 · fundraising $5,194

  • 24a · Other expenses: BANK FEES

    total $254,475 · program services $166,625 · management and general $50,723 · fundraising $37,127

  • 24b · Other expenses: DUES & SUBSCRIPTIONS

    total $198,405 · program services $154,617 · management and general $24,025 · fundraising $19,763

  • 24c · Other expenses: PRINTING & COPYING

    total $82,182 · program services $38,754 · management and general $76 · fundraising $43,352

  • 24d · Other expenses: POSTAGE & SHIPPING

    total $72,937 · program services $45,413 · management and general $692 · fundraising $26,832

  • 24e · All other expenses

    total $39,880 · program services $26,851 · fundraising $13,029

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,395,606 · end of year $2,553,798

  • 2 · Savings and temporary cash investments

    beginning of year $2,942,049 · end of year $2,996,437

  • 3 · Pledges and grants receivable

    beginning of year $83,166 · end of year $1,171,105

  • 9 · Prepaid expenses and deferred charges

    beginning of year $218,864 · end of year $349,427

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

    $249,760

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

    $80,371

  • 10c · Land, buildings and equipment, net

    beginning of year $187,238 · end of year $169,389

  • 11 · Investments: publicly traded securities

    beginning of year $13,010,733 · end of year $15,171,541

  • 14 · Intangible assets

    beginning of year $114,192 · end of year $40,642

  • 15 · Other assets

    beginning of year $850,283 · end of year $858,809

  • 17 · Accounts payable and accrued expenses

    beginning of year $298,983 · end of year $431,121

  • 25 · Other liabilities

    beginning of year $1,063,293 · end of year $1,022,339

  • 27 · Net assets without donor restrictions

    beginning of year $16,554,151 · end of year $19,441,998

  • 28 · Net assets with donor restrictions

    beginning of year $885,704 · end of year $2,415,690

Mission and programs · 2025

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 PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2025, APPROXIMATELY 34,030 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, GET CONNECTED GROUP MEETINGS, AND TEEN AND YOUNG ADULT ACTIVITIES. THERE WERE 2 MILLION WEBSITE VISITORS, OVER 480,000 VIEWS ON YOUTUBE AND 2,600 COMPROMISED DOCUMENTARY SCREENING REQUESTS. SINCE THE LAUNCH, MORE THAN 14,000 PEOPLE HAVE UTILIZED THE IMMUNE SYSTEM SELF-ASSESSMENT TOOL ON OUR WEBSITE.

    Expenses $2,949,291 · Grants $355,206

  • THE PI COMMUNITY RELIES ON 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. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, 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 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT 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 $1,555,717

  • TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000.

    Expenses $1,363,676 · Grants $254,139 · Revenue $38,600

  • Revenue $7,056

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Jorey Berry

    PRESIDENT &

    Total calculated
    $392,480
    From this org
    $335,604
    From related orgs
    $0
    Other
    $56,876
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $250,826
    Bonus
    $84,778
    Other
    not reported
    Deferred
    $36,000
    Nontaxable benefits
    $20,876
    Filer's total
    $392,480

  • Aimee Simpson

    CHIEF DEV. O

    Total calculated
    $184,423
    From this org
    $162,151
    From related orgs
    $0
    Other
    $22,272
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $159,051
    Bonus
    $3,100
    Other
    not reported
    Deferred
    $6,603
    Nontaxable benefits
    $15,669
    Filer's total
    $184,423

  • Sarah Rose

    CFO

    Total calculated
    $181,357
    From this org
    $154,436
    From related orgs
    $0
    Other
    $26,921
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $151,456
    Bonus
    $2,980
    Other
    not reported
    Deferred
    $6,476
    Nontaxable benefits
    $20,445
    Filer's total
    $181,357

  • Tammy Black

    CHIEF COMM.

    Total calculated
    $179,172
    From this org
    $157,990
    From related orgs
    $0
    Other
    $21,182
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $155,050
    Bonus
    $2,940
    Other
    not reported
    Deferred
    $6,353
    Nontaxable benefits
    $14,829
    Filer's total
    $179,172

  • Brian Lloyd

    CTO

    Total calculated
    $176,798
    From this org
    $145,885
    From related orgs
    $0
    Other
    $30,913
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $143,005
    Bonus
    $2,880
    Other
    not reported
    Deferred
    $6,080
    Nontaxable benefits
    $24,833
    Filer's total
    $176,798

  • Lynn Albizo

    PUB. POLICY

    Total calculated
    $170,917
    From this org
    $148,985
    From related orgs
    $0
    Other
    $21,932
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $146,185
    Bonus
    $2,800
    Other
    not reported
    Deferred
    $5,992
    Nontaxable benefits
    $15,940
    Filer's total
    $170,917

  • Alissa Creamer

    DIR OF EDU &

    Total calculated
    $163,958
    From this org
    $139,446
    From related orgs
    $0
    Other
    $24,512
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $136,846
    Bonus
    $2,600
    Other
    not reported
    Deferred
    $5,815
    Nontaxable benefits
    $18,697
    Filer's total
    $163,958

  • 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

  • Mark Dzwonczyk

    TRUSTEE

    Total calculated
    $0
    Hours/week
    1

  • Darcy Gott

    YOUNG ADULT

    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, PAGE 1, PART I, LINE 4
JOREY BERRY 0 25,500 0
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
2025
Filed
13 July 2026
IRS schema version
2025v4.0
Source object
202642019349300419

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