Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 1987.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
92 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Who runs it and what they're paid
34 people listed on the 990; $1.7M paid to officers and key staff.
Compensation history total reportable pay by year · 8 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Frederick Modell | $716,538 | $406,346 | $395,000 | $395,000 | $395,000 |
| Vanessa Tenembaum | $354,119 | $298,371 | $239,295 | $219,518 | $224,870 |
| Vicki Modell | — | — | $295,000 | $295,000 | $295,000 |
| Jessica Quinn | $200,677 | $176,948 | $156,314 | $143,076 | $145,734 |
| Christopher Sims | $198,273 | $176,179 | $154,175 | $134,615 | $60,461 |
| Roger Davilla | $197,465 | $176,371 | $134,776 | — | — |
| Rachel Bass | — | — | — | $38,278 | $114,026 |
| Jo Ann Fortunato | — | — | — | — | $59,858 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Funds research and education to diagnose, treat, and cure rare immune system disorders.
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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.
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.
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Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $10.4M | $9.6M |
| InvestmentsLn 11–13 | $25.7M | $30.1M |
| Land, buildings, equipmentLn 10c | $13K | $893 |
| Total assetsLn 16 | $42.9M | $46.0M |
| LiabilitiesLn 26 | $5.9M | $6.3M |
| Net assetsLn 32 | $37.0M | $39.8M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $1.1M | $1.1M | ||
| Grants to domestic individualsLn 2 | $0 | |||
| Grants and assistance to foreign recipientsLn 3 | $1.0M | $1.0M | ||
| Benefits paid to or for membersLn 4 | $0 | |||
| Pay of current officers, directors and key staffLn 5 | $1.7M | $1.5M | $117K | $67K |
| Pay of disqualified personsLn 6 | $0 | |||
| Other salaries and wagesLn 7 | $852K | $758K | $60K | $34K |
| Pension plan contributionsLn 8 | $0 | |||
| Other employee benefitsLn 9 | $0 | |||
| Payroll taxesLn 10 | $0 | |||
| Management feesLn 11a | $161K | $113K | $48K | |
| Legal feesLn 11b | $90K | $63K | $27K | |
| Accounting feesLn 11c | $48K | $33K | $14K | |
| Lobbying feesLn 11d | $0 | |||
| Professional fundraising feesLn 11e | $0 | |||
| Investment management feesLn 11f | $0 | |||
| Other fees for servicesLn 11g | $0 | |||
| Advertising and promotionLn 12 | $0 | |||
| Office expensesLn 13 | $65K | $58K | $4K | $3K |
| Information technologyLn 14 | $137K | $115K | $12K | $10K |
| RoyaltiesLn 15 | $0 | |||
| OccupancyLn 16 | $776K | $691K | $85K | |
| TravelLn 17 | $68K | $60K | $5K | $3K |
| Travel and entertainment for public officialsLn 18 | $0 | |||
| Conferences, conventions and meetingsLn 19 | $1.0M | $915K | $72K | $41K |
| InterestLn 20 | $0 | |||
| Payments to affiliatesLn 21 | $0 | |||
| Depreciation, depletion and amortizationLn 22 | $4K | $4K | ||
| InsuranceLn 23 | $0 | |||
| Other expenses (24a–d)Ln 24 | $1.9M | $1.8M | $34K | $89K |
| All other expensesLn 24e | $276K | $225K | $29K | $21K |
| Total functional expensesLn 25 | $9.3M | $8.5M | $507K | $268K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $10.2M | $9.3M | $941K | $39.8M | 990 PDF |
| FY2023 | $9.6M | $7.4M | $2.2M | $37.0M | 990 PDF |
| FY2022 | $8.8M | $5.9M | $2.9M | $32.3M | 990 PDF |
| FY2021 | $6.1M | $5.3M | $891K | $35.8M | 990 PDF |
| FY2020 | $10.1M | $4.8M | $5.3M | $34.9M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (4 parts)
Part VIII · Statement of revenue $10,208,043 across 9 lines filed
Part IX · Statement of functional expenses $9,266,854 across 31 lines filed
Part X · Balance sheet $46,039,860 assets, 19 lines filed
Part XI · Reconciliation of net assets $39,772,693 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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