Totals
- Total revenue
- $9,602,449
- Total expenses
- $7,360,289
- Contributions and grants received
- $9,078,111
- Grants paid
- $2,094,727
- Program service revenue
- $0
- Investment income
- $524,338
- Other revenue
- $0
- Total assets, end of year
- $42,921,915
- Total liabilities, end of year
- $5,889,326
- Net assets or fund balances, end of year
- $37,032,589
- Program services expenses (Part IX)
- $6,723,857
- Management and general expenses
- $377,314
- Fundraising expenses
- $259,118
- Program service expenses (Part III)
- $6,723,857
Program services were 91.4% 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)
$3,000,000
-
1f · All other contributions, gifts and grants
$6,078,111
-
3 · Investment income
total $497,562 · related or exempt $497,562
-
4 · Income from investment of tax-exempt bond proceeds
total $0
-
5 · Royalties
total $0
-
6d · Net rental income or loss
total $0
-
7a · Gross sales of assets other than inventory
securities $2,324,662
-
7b · Less cost or other basis and sales expenses
securities $2,297,886
-
7c · Gain or loss
securities $26,776
-
7d · Net gain or loss
total $26,776 · related or exempt $26,776
-
8c · Net income from fundraising events
total $0
-
9c · Net income from gaming
total $0
-
10c · Net income from sales of inventory
total $0
-
11e · Other revenue, total
$0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $1,083,904 · program services $1,083,904
-
2 · Grants to domestic individuals
total $0
-
3 · Grants to foreign organizations and individuals
total $1,010,823 · program services $1,010,823
-
4 · Benefits paid to or for members
total $0
-
5 · Compensation of officers, directors and key employees
total $1,234,215 · program services $1,098,451 · management and general $74,053 · fundraising $61,711
-
6 · Compensation of disqualified persons
total $0
-
7 · Other salaries and wages
total $731,470 · program services $650,850 · management and general $44,056 · fundraising $36,564
-
8 · Pension plan contributions
total $0
-
9 · Other employee benefits
total $0
-
10 · Payroll taxes
total $0
-
11a · Fees: management
total $0
-
11b · Fees: legal
total $118,154 · program services $35,446 · management and general $82,708
-
11c · Fees: accounting
total $0
-
11d · Fees: lobbying
total $0
-
11e · Fees: professional fundraising services
total $0
-
11f · Fees: investment management
total $0
-
11g · Fees: other
total $0
-
12 · Advertising and promotion
total $0
-
13 · Office expenses
total $0
-
14 · Information technology
total $159,823 · program services $135,964 · management and general $14,315 · fundraising $9,544
-
15 · Royalties
total $0
-
16 · Occupancy
total $955,182 · program services $906,941 · management and general $48,241
-
17 · Travel
total $47,990 · program services $42,711 · management and general $3,359 · fundraising $1,920
-
18 · Travel or entertainment for public officials
total $0
-
19 · Conferences, conventions and meetings
total $831,676 · program services $737,757 · management and general $52,472 · fundraising $41,447
-
20 · Interest
total $0
-
21 · Payments to affiliates
total $0
-
22 · Depreciation, depletion and amortization
total $5,396 · program services $5,396
-
23 · Insurance
total $0
-
24a · Other expenses: PUBLIC SERVICE ADVERTISING
total $624,513 · program services $555,816 · management and general $37,471 · fundraising $31,226
-
24b · Other expenses: PROGRAM SERVICES
total $200,413 · program services $200,413
-
24c · Other expenses: MISCELLANEOUS
total $160,000 · program services $129,600 · management and general $17,600 · fundraising $12,800
-
24d · Other expenses: GRANT AND PROGRAM DEVELOPMENT
total $145,912 · program services $84,712 · fundraising $61,200
-
24e · All other expenses
total $50,818 · program services $45,073 · management and general $3,039 · fundraising $2,706
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $9,148,035 · end of year $10,350,828
-
2 · Savings and temporary cash investments
end of year $0
-
3 · Pledges and grants receivable
beginning of year $102,076 · end of year $15,270
-
4 · Accounts receivable
end of year $0
-
5 · Loans and receivables from officers and key people
end of year $0
-
6 · Loans and receivables from disqualified persons
end of year $0
-
7 · Other notes and loans receivable
end of year $0
-
8 · Inventories for sale or use
end of year $0
-
9 · Prepaid expenses and deferred charges
end of year $0
-
10a · Land, buildings and equipment: cost or other basis
$424,403
-
10b · Land, buildings and equipment: accumulated depreciation
$411,370
-
10c · Land, buildings and equipment, net
beginning of year $18,428 · end of year $13,033
-
11 · Investments: publicly traded securities
end of year $0
-
12 · Investments: other securities
beginning of year $21,493,898 · end of year $25,662,690
-
13 · Investments: program-related
end of year $0
-
14 · Intangible assets
end of year $0
-
15 · Other assets
beginning of year $7,884,746 · end of year $6,880,094
-
17 · Accounts payable and accrued expenses
beginning of year $13,645 · end of year $13,645
-
19 · Deferred revenue
end of year $10,000
-
25 · Other liabilities
beginning of year $6,287,563 · end of year $5,865,681
-
27 · Net assets without donor restrictions
beginning of year $32,345,975 · end of year $37,032,589
Mission and programs · 2023
Mission
The Foundation is dedicated to the early diagnosis, treatment and ultimate cure of Primary Immunodeficiency Diseases. The Foundations primary mission is supporting basic and clinical research, physician education, patient support, public awareness, advocacy and newborn screening. The Foundation generates support through contributions from the general public, industry, and government agencies. The Foundation sponsors physician symposia, conferences, educational events for physicians and patients, and awareness programs to reach the public.
-
THE ORGANIZATION CONDUCTED PUBLIC SERVICE ADVERTISING CAMPAIGNS DIRECTED TO THE GENERAL PUBLIC TO CREATE PUBLIC AWARENESS, AS WELL AS TO EDUCATE BOTH TREATING PHYSICIANS AND THE GENERAL PUBLIC ABOUT IMMUNODEFICIENCY DISEASES.
Expenses $6,253,187 · Grants $5,446,867
-
BASIC AND CLINICAL RESEARCH SUPPORT AT NUMEROUS EDUCATIONAL INSTITUTIONS AND HOSPITALS THROUGHOUT THE UNITED STATES AND WORLD-WIDE AS REPORTED IN ACCOMPANYING SCHEDULE F AND SCHEDULE I. IN ADDITION, THE FOUNDATION PROVIDED FUNDING TO REGIONAL AND NATIONAL PATIENT ORGANIZATIONS GLOBALLY.
Expenses $470,670 · Grants $3,631,244
As filed on the 2023 return.
Listed in Part VII
-
Frederick ModellFREDERICK MODELL
President
- Total calculated
- $406,346
- From this org
- $406,346
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $406,346
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- $406,346
-
Vanessa TenembaumVANESSA TENEMBAUM
EXECUTIVE DIRECTOR
- Total calculated
- $298,371
- From this org
- $298,371
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $298,371
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- $298,371
-
Jessica QuinnJESSICA QUINN
SCIENTIFIC DIRECTOR
- Total calculated
- $176,948
- From this org
- $176,948
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $176,948
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- $176,948
-
Roger DavillaROGER DAVILLA
- Total calculated
- $176,371
- From this org
- $176,371
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $176,371
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- $176,371
-
Christopher SimsCHRISTOPHER SIMS
CHIEF FINANCIAL OFFICER
- Total calculated
- $176,179
- From this org
- $176,179
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $176,179
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- $176,179
-
Michael DavidsonMICHAEL DAVIDSON
Director
- Total calculated
- $0
- Hours/week
- 2
-
Wendy LevineWENDY LEVINE
Director
- Total calculated
- $0
- Hours/week
- 2
-
Helen Chaitman EsqHELEN CHAITMAN ESQ
Director
- Total calculated
- $0
- Hours/week
- 2
-
Jennifer Chaitman DVMJENNIFER CHAITMAN DVM
Director
- Total calculated
- $0
- Hours/week
- 2
-
Bettina EmdenBETTINA EMDEN
Director
- Total calculated
- $0
- Hours/week
- 2
-
Frann Eric FrancisFRANN ERIC FRANCIS
Director
- Total calculated
- $0
- Hours/week
- 2
-
Robbie Alan FranklinesqROBBIE ALAN FRANKLINESQ
Director
- Total calculated
- $0
- Hours/week
- 2
-
Allyson Alan GalishoffALLYSON ALAN GALISHOFF
Director
- Total calculated
- $0
- Hours/week
- 2
-
Lynn ManheimLYNN MANHEIM
Director
- Total calculated
- $0
- Hours/week
- 2
-
Gene ManheimGENE MANHEIM
Director
- Total calculated
- $0
- Hours/week
- 2
-
Hassan AhmedHASSAN AHMED
Director
- Total calculated
- $0
- Hours/week
- 2
-
Felice AxelrodFELICE AXELROD
Director
- Total calculated
- $0
- Hours/week
- 2
-
Ron SnyderRON SNYDER
Director
- Total calculated
- $0
- Hours/week
- 2
-
Faisal KhalidFAISAL KHALID
OVERSEER
- Total calculated
- $0
- Hours/week
- 2
-
Brenda Gary LavignaBRENDA GARY LAVIGNA
Director
- Total calculated
- $0
- Hours/week
- 2
-
Lisa Stephen LawrenceLISA STEPHEN LAWRENCE
Director
- Total calculated
- $0
- Hours/week
- 2
-
Debbi Max LebersfeldDEBBI MAX LEBERSFELD
Director
- Total calculated
- $0
- Hours/week
- 2
-
Debbe Longo StroutDEBBE LONGO STROUT
Director
- Total calculated
- $0
- Hours/week
- 2
-
Jonathan Mechanic EsqJONATHAN MECHANIC ESQ
Director
- Total calculated
- $0
- Hours/week
- 2
-
Carol James RandelCAROL JAMES RANDEL
Director
- Total calculated
- $0
- Hours/week
- 2
-
Jason ShumanJASON SHUMAN
Director
- Total calculated
- $0
- Hours/week
- 2
-
Lisa Stephen ShumanLISA STEPHEN SHUMAN
Director
- Total calculated
- $0
- Hours/week
- 2
-
Luciana Michael SolomonLUCIANA MICHAEL SOLOMON
Director
- Total calculated
- $0
- Hours/week
- 2
-
Susan Barry Stein MDSUSAN BARRY STEIN MD
Director
- Total calculated
- $0
- Hours/week
- 2
-
Jodi PuliceJODI PULICE
Director
- Total calculated
- $0
- Hours/week
- 2
-
Lisa William WexlerLISA WILLIAM WEXLER
Director
- Total calculated
- $0
- Hours/week
- 2
-
Greg SmithGREG SMITH
Director
- Total calculated
- $0
- Hours/week
- 2
-
Ryan G SmithRYAN G SMITH
Director
- Total calculated
- $0
- Hours/week
- 2
-
Taylor SmithTAYLOR SMITH
Director
- Total calculated
- $0
- Hours/week
- 2
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
None.
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
-
UCLA FOUNDATION-GEFFEN SCHOOL
$107,544
RESEARCH
-
CHILDRENS HOSP-PHILADELPHIA
$103,000
RESEARCH
-
NEW YORK UNIVERSITY
$100,000
RESEARCH
-
COLUMBIA UNIVERSITY
$81,000
RESEARCH
-
INDIVIDUAL SMALL GRANTS
$66,760
RESEARCH
-
BOSTON CHILDRENS HOSPITAL
$50,000
RESERACH
-
CHILDRENS HOSP OF COLORADO
$50,000
RESEARCH
-
LURIE CHILDRENS HOSPITAL
$50,000
RESEARCH
-
TEXAS CHILDRENS HOSPITAL
$50,000
RESEARCH
-
WASHINGTON UNIVER-ST LOUIS
$40,000
RESEARCH
The 10 largest by cash amount. The API serves every itemized grant.
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 4 November 2024
- IRS schema version
- 2023v5.1
- Source object
- 202433099349301388
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
The source document this was parsed from is served over the API, which is where bulk and document access live.