Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Mar 1996.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
80 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
17 people listed on the 990; $614K paid to officers and key staff.
Scott Santarella’s $352K as President and CEO is at the 57th percentile of top reported officer pay among 2901 $10–100M health care 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 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|
| Scott Santarella | $352,414 | $315,753 | — | — |
| Miriam a O'Day | — | — | $187,865 | $276,735 |
| Randel H Plant | $158,473 | $134,428 | $129,239 | $121,544 |
| Linda Rodriguez | $136,689 | $113,589 | — | — |
| Angela T McBride | $135,996 | $120,202 | $115,193 | $108,866 |
| Jeanne Kushner | $110,591 | — | — | — |
| Adriana Arce | $107,310 | — | — | — |
| Linda M Rodriguez | — | — | $104,627 | — |
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
Fund research and support patients with Alpha1 Antitrypsin Deficiency.
Questions for Alpha-1 Foundation INC
Your first name shows with your question. Alpha-1 Foundation INC answers here, for everyone.
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Alpha-1 Research Network
The Alpha-1 research infrastructure provides support for a network of Alpha-1 investigators worldwide. It is one of the Foundation's most valuable assets and includes the DNA & Tissue Bank, Therapeutic Development Network, and Clinical Resource Centers.
Alpha-1 Registry and Act Study
The Research Registry is a confidential database of diagnosed Alphas and carriers willing and able to participate in research studies and clinical trials for new therapies. It is comprised of both patient-supported and clinical data. The Registry represents the largest cohort of Alphas in the world.
Alpha-1 National Conference
The 31st annual Alpha-1 National Educational Conference was a hybrid conference held on June 8-11, 2022. As the largest annual gathering of the Alpha-1 community, the National Conference provides important opportunities for networking, education, and advocacy.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2022 990, line by line.
Download 990
| Line | Start FY22 | End FY22 |
|---|---|---|
| Cash and savingsLn 1–2 | $8.6M | $12.4M |
| InvestmentsLn 11–13 | $24.9M | $22.2M |
| Land, buildings, equipmentLn 10c | $22K | $13K |
| Total assetsLn 16 | $34.6M | $35.5M |
| LiabilitiesLn 26 | $2.4M | $2.6M |
| Net assetsLn 32 | $32.2M | $32.9M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $1.7M | $1.7M | ||
| Grants to domestic individualsLn 2 | $54K | $54K | ||
| Grants and assistance to foreign recipientsLn 3 | $806K | $806K | ||
| Other salaries and wagesLn 7 | $1.4M | $1.0M | $84K | $275K |
| Pension plan contributionsLn 8 | $19K | $14K | $2K | $3K |
| Other employee benefitsLn 9 | $200K | $156K | $7K | $38K |
| Payroll taxesLn 10 | $103K | $76K | $7K | $21K |
| Management feesLn 11a | $220K | $120K | $100K | |
| Legal feesLn 11b | $115K | $90K | $25K | |
| Accounting feesLn 11c | $64K | $64K | ||
| Lobbying feesLn 11d | $10K | $10K | ||
| Investment management feesLn 11f | $146K | $146K | ||
| Other fees for servicesLn 11g | $358K | $283K | $68K | $7K |
| Office expensesLn 13 | $419K | $298K | $30K | $91K |
| Information technologyLn 14 | $79K | $52K | $20K | $7K |
| OccupancyLn 16 | $219K | $162K | $13K | $44K |
| TravelLn 17 | $36K | $18K | $16K | $2K |
| Conferences, conventions and meetingsLn 19 | $153K | $103K | $46K | $4K |
| Depreciation, depletion and amortizationLn 22 | $9K | $6K | $538 | $2K |
| InsuranceLn 23 | $36K | $18K | $13K | $5K |
| Other expenses (24a–d)Ln 24 | $222K | $79K | $59K | $84K |
| Total functional expensesLn 25 | $6.4M | $5.1M | $702K | $584K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $13.8M | $14.0M | −$225K | $44.0M | 990 PDF |
| FY2024 | $11.6M | $10.1M | $1.5M | $41.9M | 990 PDF |
| FY2023 | $10.5M | $8.5M | $1.9M | $35.5M | 990 PDF |
| FY2022 Viewing | $10.9M | $6.4M | $4.5M | $32.9M | 990 PDF |
| FY2021 | $10.9M | $6.3M | $4.7M | $32.2M | 990 PDF |
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Schedules filed Part IV
See the full FY2022 990 (6 parts)
Part I · Summary $10,890,084 revenue, 12 lines filed
Part VI · Governance 11 of 11 board members independent, no flags
Part VIII · Statement of revenue $10,890,084 across 9 lines filed
Part IX · Statement of functional expenses $6,364,206 across 21 lines filed
Part X · Balance sheet $35,496,616 assets, 17 lines filed
Part XI · Reconciliation of net assets $32,872,896 net assets at year end
Form 990 e-file (XML) FY2022 from the IRS · Classification, formation year and address from the IRS Business Master File
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