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Nonprofiteer
← IMMUNE DEFICIENCY FOUNDATION

Form 990 for tax year 2023

Filed by IMMUNE DEFICIENCY FOUNDATION.

Totals

Total revenue
$8,985,857
Total expenses
$7,402,254
Contributions and grants received
$8,657,179
Grants paid
$244,104
Program service revenue
$13,090
Investment income
$315,588
Other revenue
$0
Total assets, end of year
$17,355,217
Total liabilities, end of year
$1,438,468
Net assets or fund balances, end of year
$15,916,749
Program services expenses (Part IX)
$5,083,281
Management and general expenses
$1,174,171
Fundraising expenses
$1,144,802
Program service expenses (Part III)
$5,083,281

Program services were 68.7% 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)

    $322,570

  • 1f · All other contributions, gifts and grants

    $8,334,609

  • 1g · Noncash contributions included above

    $43,157

  • 2a · Program service revenue: SURVEY INCOME

    total $12,100 · related or exempt $12,100

  • 2b · Program service revenue: OTHER INCOME

    total $990 · related or exempt $990

  • 3 · Investment income

    total $398,737 · excluded $398,737

  • 7a · Gross sales of assets other than inventory

    securities $10,462,398

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

    securities $10,545,547

  • 7c · Gain or loss

    securities -$83,149

  • 7d · Net gain or loss

    total -$83,149 · excluded -$83,149

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $217,750 · program services $217,750

  • 2 · Grants to domestic individuals

    total $26,354 · program services $26,354

  • 5 · Compensation of officers, directors and key employees

    total $469,994 · program services $199,092 · management and general $218,273 · fundraising $52,629

  • 7 · Other salaries and wages

    total $3,193,169 · program services $2,115,135 · management and general $603,461 · fundraising $474,573

  • 8 · Pension plan contributions

    total $115,337 · program services $74,135 · management and general $25,552 · fundraising $15,650

  • 9 · Other employee benefits

    total $365,402 · program services $231,927 · management and general $84,043 · fundraising $49,432

  • 10 · Payroll taxes

    total $274,029 · program services $173,901 · management and general $59,537 · fundraising $40,591

  • 11b · Fees: legal

    total $34,623 · program services $32,148 · management and general $713 · fundraising $1,762

  • 11c · Fees: accounting

    total $29,158 · program services $27,073 · management and general $601 · fundraising $1,484

  • 11d · Fees: lobbying

    total $199,969 · program services $199,969

  • 11f · Fees: investment management

    total $63,532 · program services $44,772 · management and general $8,424 · fundraising $10,336

  • 11g · Fees: other

    total $675,274 · program services $612,705 · management and general $17,999 · fundraising $44,570

  • 12 · Advertising and promotion

    total $27,398 · program services $9,894 · fundraising $17,504

  • 13 · Office expenses

    total $118,817 · program services $77,784 · management and general $24,934 · fundraising $16,099

  • 14 · Information technology

    total $155,607 · program services $144,481 · management and general $3,206 · fundraising $7,920

  • 16 · Occupancy

    total $102,983 · program services $66,208 · management and general $21,461 · fundraising $15,314

  • 17 · Travel

    total $109,661 · program services $78,976 · management and general $7,467 · fundraising $23,218

  • 19 · Conferences, conventions and meetings

    total $455,521 · program services $317,498 · management and general $20,506 · fundraising $117,517

  • 20 · Interest

    total $64 · management and general $64

  • 22 · Depreciation, depletion and amortization

    total $168,728 · program services $110,002 · management and general $34,272 · fundraising $24,454

  • 23 · Insurance

    total $37,680 · program services $26,429 · management and general $6,264 · fundraising $4,987

  • 24a · Other expenses: DUES & SUBSCRIPTIONS

    total $186,981 · program services $132,447 · management and general $21,723 · fundraising $32,811

  • 24b · Other expenses: PRINTING & COPYING

    total $115,770 · program services $73,731 · management and general $447 · fundraising $41,592

  • 24c · Other expenses: BANK FEES

    total $114,839 · program services $8,739 · management and general $8,821 · fundraising $97,279

  • 24d · Other expenses: POSTAGE & SHIPPING

    total $90,796 · program services $55,390 · fundraising $35,406

  • 24e · All other expenses

    total $52,818 · program services $26,741 · management and general $6,403 · fundraising $19,674

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,250,364 · end of year $1,346,127

  • 2 · Savings and temporary cash investments

    beginning of year $1,536,582 · end of year $2,374,122

  • 3 · Pledges and grants receivable

    beginning of year $58,271 · end of year $79,899

  • 4 · Accounts receivable

    beginning of year $8,920 · end of year $18,506

  • 9 · Prepaid expenses and deferred charges

    beginning of year $188,115 · end of year $281,164

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

    $249,760

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

    $45,236

  • 10c · Land, buildings and equipment, net

    beginning of year $210,537 · end of year $204,524

  • 11 · Investments: publicly traded securities

    beginning of year $10,175,769 · end of year $11,924,537

  • 14 · Intangible assets

    beginning of year $196,186 · end of year $214,663

  • 15 · Other assets

    beginning of year $943,197 · end of year $911,675

  • 17 · Accounts payable and accrued expenses

    beginning of year $306,894 · end of year $308,172

  • 19 · Deferred revenue

    beginning of year $63,962 · end of year $26,695

  • 25 · Other liabilities

    beginning of year $1,155,075 · end of year $1,103,601

  • 27 · Net assets without donor restrictions

    beginning of year $11,721,888 · end of year $14,001,757

  • 28 · Net assets with donor restrictions

    beginning of year $1,320,122 · end of year $1,914,992

Mission and programs · 2023

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 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 FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2023, APPROXIMATELY 30,320 INDIVIDUALS WERE SUPPORTED AND HELPED BY ATTENDING OR LISTENING TO MORE THAN 360 PRESENTATIONS AT NO ADDITIONAL COST TO THEM. THESE INCLUDED EDUCATION SESSIONS, IDF GET CONNECTED GROUP MEETINGS, TEEN AND YOUNG ADULT ACTIVITIES, THE IDF PI CONFERENCE, AND PODCAST EPISODES. MORE THAN 822,000 USERS ACCESSED THE IDF WEBSITE FOR INFORMATION AND SUPPORT.

    Expenses $3,050,669 · Grants $15,704

  • 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 FULFILLED INFORMATION REQUESTS FROM MORE THAN 1,665 INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF WORKS THROUGHOUT THE YEAR AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THE PI COMMUNITY. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK WORKS TO INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2023, WITH SUPPORT FROM IDF, LEGISLATION WAS REINTRODUCED TO BAN COPAY ACCUMULATORS FEDERALLY BY A BILL IN THE U.S. HOUSE OF REPRESENTATIVES. AT IDF ADVOCACY DAY, 243 INDIVIDUALS MET WITH AND SENT MESSAGES TO MEMBERS OF CONGRESS 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 $956,777 · Grants $500

  • 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 NINE MEDICAL CONFERENCES, PROVIDING INFORMATION AND RESOURCES TO OVER 3,195 HEALTHCARE 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 2023, OVER 2,000 INDIVIDUALS PARTICIPATED IN TWO IDF PATIENT SURVEYS TO GATHER DATA ON THE PI EXPERIENCE SINCE NO FEDERALLY FUNDED HEALTH SURVEYS IN THE U.S. COLLECT INFORMATION ON PI. THERE WERE THREE ABSTRACTS AND FOUR PUBLISHED MANUSCRIPTS ALL USING USIDNET DATA. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED FIVE RESEARCH GRANTS IN 2023 TOTALING OVER 192,000.

    Expenses $1,075,835 · Grants $227,900 · Revenue $12,100

  • Revenue $990

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Jorey Berry

    PRESIDENT &

    Total calculated
    $300,588
    From this org
    $268,604
    From related orgs
    $0
    Other
    $31,984
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $223,104
    Bonus
    $45,500
    Other
    not reported
    Deferred
    $9,575
    Nontaxable benefits
    $22,409
    Filer's total
    $300,588

  • Sarah Rose

    CFO

    Total calculated
    $169,407
    From this org
    $140,396
    From related orgs
    $0
    Other
    $29,011
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $140,396
    Bonus
    not reported
    Other
    not reported
    Deferred
    $5,809
    Nontaxable benefits
    $23,202
    Filer's total
    $169,407

  • Brian Lloyd

    CTO

    Total calculated
    $167,968
    From this org
    $136,376
    From related orgs
    $0
    Other
    $31,592
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $136,376
    Bonus
    not reported
    Other
    not reported
    Deferred
    $5,590
    Nontaxable benefits
    $26,002
    Filer's total
    $167,968

  • Aimee Simpson

    VP INSTITUTI

    Total calculated
    $163,106
    From this org
    $145,327
    From related orgs
    $0
    Other
    $17,779
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $145,327
    Bonus
    not reported
    Other
    not reported
    Deferred
    $5,809
    Nontaxable benefits
    $11,970
    Filer's total
    $163,106

  • Tammy Black

    VP COMMUNICA

    Total calculated
    $160,677
    From this org
    $142,074
    From related orgs
    $0
    Other
    $18,603
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $142,074
    Bonus
    not reported
    Other
    not reported
    Deferred
    $5,665
    Nontaxable benefits
    $12,938
    Filer's total
    $160,677

  • Lynn Albizo

    VP PUBLIC PO

    Total calculated
    $155,014
    From this org
    $127,911
    From related orgs
    $0
    Other
    $27,103
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $127,911
    Bonus
    not reported
    Other
    not reported
    Deferred
    $5,201
    Nontaxable benefits
    $21,902
    Filer's total
    $155,014

  • Christopher Duckett

    DIRECTOR OF

    Total calculated
    $147,840
    From this org
    $113,790
    From related orgs
    $0
    Other
    $34,050
    Hours/week
    40

  • 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

  • Harper Spero

    DEVELOPMENT

    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

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
24 June 2024
IRS schema version
2023v5.0
Source object
202401799349300940

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