Status and standing
Is it real, and can you give to it?
Where the money goes
What each dollar paid for.
Statement of Functional Expenses
Financial health
Is it on solid ground?
Summary of the Filing
| FY2020 | $34.9M |
|---|---|
| FY2021 | $36.1M |
| FY2022 | $38.6M |
| FY2023 | $42.9M |
| FY2024 | $46.0M |
| FY2020 | $0 |
|---|---|
| FY2021 | $238K |
| FY2022 | $6.3M |
| FY2023 | $5.9M |
| FY2024 | $6.3M |
Balance Sheet
Statement of Revenue
Financial Metrics
Same NTEE category, revenue band, and state where available. Descriptive — not a grade.
| Metric | This org | Peer median | Percentile |
|---|---|---|---|
| Program ratio | 92% | — | — |
| Overhead ratio | 5% | — | — |
| Fundraising cost ratio | 3% | — | — |
| Revenue growth | 6% | — | — |
| Investment management fee ratio | 0% | — | — |
| Legal fee ratio | 1.0% | — | — |
| Accounting fee ratio | 0.5% | — | — |
| Fundraising fee ratio | 0% | — | — |
Straight from the Form 990 — descriptive, not an evaluation. A ratio is hidden when its base is zero or too small to be meaningful; the dollars are always shown.
Leadership and pay
Who runs it, and what are they paid?
Officers, Directors & Key Employees
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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Governance & Policies
- 41Voting board membersPt VI · Ln 1a
- 41Independent board membersPt VI · Ln 1b
- Conflict-of-interest policyPt VI · Ln 12aYes
- Whistleblower policyPt VI · Ln 13Yes
- Document retention policyPt VI · Ln 14Yes
- Top official’s pay independently reviewedPt VI · Ln 15aYes
- Family or business ties among leadersPt VI · Ln 2No
Mission and programs
What it does.
Funds research and education to diagnose, treat, and cure rare immune system disorders.
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Where the work happens
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
Filing history
Every return on file.
| Year | Revenue | Expenses | Change | Filing |
|---|---|---|---|---|
| FY2024 Latest Viewing | $10.2M | $9.3M | +6% | 990 PDF |
| FY2023 | $9.6M | $7.4M | +9% | 990 PDF |
| FY2022 | $8.8M | $5.9M | +43% | 990 PDF |
| FY2021 | $6.1M | $5.3M | -39% | 990 PDF |
| FY2020 | $10.1M | $4.8M | 990 PDF |
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Schedules filed Part IV
Not shown yet: ratings, outcomes, and peer benchmarks. A Form 990 doesn’t report them.
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Sources
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