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
84 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
18 people listed on the 990; $684K 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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Programs and updates
Fund research and support patients with Alpha1 Antitrypsin Deficiency.
Questions for Alpha-1 Foundation INC
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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 Reource Centers.
Alpha-1 National Conference
The 32nd annual Alpha-1 National Educational Conference was a hybrid conference held on June 9-11, 2023. As the largest annual gathering of the Alpha-1 community, the National Conference provides important opportunities for networking, education, and advocacy.
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.
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
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 Viewing | $11.6M | $10.1M | $1.5M | $41.9M | 990 PDF |
| FY2023 | $10.5M | $8.5M | $1.9M | $35.5M | 990 PDF |
| FY2022 | $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
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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