Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Apr 1986.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
70 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
21 people listed on the 990; $1.2M paid to officers and key staff.
Jorey Berry’s $336K as President & is at the 37th percentile of top reported officer pay among 127 $10–100M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 8 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|---|
| Jorey Berry | $335,604 | $291,976 | $268,604 | $215,354 | — | — |
| John G Boyle | — | — | — | — | $135,164 | $209,708 |
| Aimee Simpson | $162,151 | $157,876 | $145,327 | $132,431 | — | — |
| Tammy Black | $157,990 | $151,684 | $142,074 | $134,742 | $133,740 | $122,883 |
| Sarah Rose | $154,436 | $147,965 | $140,396 | $134,904 | $148,002 | $126,441 |
| Lynn Albizo | $148,985 | $142,625 | $127,911 | $121,346 | $121,850 | — |
| Kathryn Stephens | — | — | — | — | $148,075 | — |
| Brian Lloyd | $145,885 | $143,863 | $136,376 | — | — | — |
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
Helps people with rare immune system disorders live better lives.
This section is blank until Immune Deficiency Foundation claims this page.
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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…
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.
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…
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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 FY2025 990, line by line.
Download 990
| Line | Start FY25 | End FY25 |
|---|---|---|
| Cash and savingsLn 1–2 | $4.3M | $5.6M |
| InvestmentsLn 11–13 | $13.0M | $15.2M |
| Land, buildings, equipmentLn 10c | $187K | $169K |
| Total assetsLn 16 | $18.8M | $23.3M |
| LiabilitiesLn 26 | $1.4M | $1.5M |
| Net assetsLn 32 | $17.4M | $21.9M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $267K | $267K | ||
| Grants to domestic individualsLn 2 | $343K | $343K | ||
| Pay of current officers, directors and key staffLn 5 | $574K | $319K | $215K | $40K |
| Other salaries and wagesLn 7 | $3.6M | $2.4M | $763K | $467K |
| Pension plan contributionsLn 8 | $127K | $80K | $36K | $11K |
| Other employee benefitsLn 9 | $410K | $258K | $118K | $35K |
| Payroll taxesLn 10 | $311K | $202K | $69K | $39K |
| Legal feesLn 11b | $12K | $10K | $925 | $760 |
| Accounting feesLn 11c | $26K | $22K | $2K | $2K |
| Lobbying feesLn 11d | $246K | $246K | ||
| Investment management feesLn 11f | $85K | $85K | ||
| Other fees for servicesLn 11g | $636K | $508K | $70K | $58K |
| Advertising and promotionLn 12 | $18K | $6K | $12K | |
| Office expensesLn 13 | $84K | $51K | $21K | $11K |
| Information technologyLn 14 | $161K | $138K | $13K | $11K |
| OccupancyLn 16 | $102K | $66K | $21K | $15K |
| TravelLn 17 | $199K | $166K | $18K | $15K |
| Conferences, conventions and meetingsLn 19 | $417K | $304K | $21K | $93K |
| Depreciation, depletion and amortizationLn 22 | $91K | $71K | $12K | $9K |
| InsuranceLn 23 | $40K | $29K | $6K | $5K |
| Other expenses (24a–d)Ln 24 | $608K | $405K | $76K | $127K |
| All other expensesLn 24e | $40K | $27K | $13K | |
| Total functional expensesLn 25 | $8.4M | $5.9M | $1.5M | $963K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest Viewing | $11.4M | $8.4M | $3.0M | $21.9M | 990 PDF |
| FY2024 | $10.1M | $9.6M | $519K | $17.4M | 990 PDF |
| FY2023 | $9.0M | $7.4M | $1.6M | $15.9M | 990 PDF |
| FY2022 | $8.9M | $7.9M | $916K | $13.0M | 990 PDF |
| FY2021 | $9.9M | $8.0M | $1.9M | $13.8M | 990 PDF |
| FY2020 | $6.8M | $6.5M | $250K | $11.4M | 990 PDF |
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Schedules filed Part IV
See the full FY2025 990 (4 parts)
Part VIII · Statement of revenue $11,404,598 across 7 lines filed
Part IX · Statement of functional expenses $8,377,069 across 22 lines filed
Part X · Balance sheet $23,311,148 assets, 16 lines filed
Part XI · Reconciliation of net assets $21,857,688 net assets at year end
Form 990 e-file (XML) FY2025 from the IRS · Classification, formation year and address from the IRS Business Master File
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