ALPHA-1 Foundation
ALPHA-1 Foundation reported $13.8 million in revenue and $14.0 million in expenses for the fiscal year ending June 30, 2025. Of every $100 it spent, $84.33 went to program services, $7.62 to management and general costs and $8.05 to fundraising. Its largest source of revenue was contributions and grants: 73.9% of the total. The highest compensation it reported for one person was $377,503 (PRESIDENT AND CEO). 6 people received more than $100,000 in reportable compensation. Revenue rose 26% between FY2021 and FY2025. Source: Form 990, FY2025.
Where $100 of spending went
The fiscal year ending June 30, 2025 · Form 990, Part IX, line 25 · total expenses $14MFor context, the median across 5,634 covered health care charities: $86.19 programs, $13.81 management, $0.00 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
The fiscal year ending June 30, 2025 · Form 990, Part VIII · total revenue $14MThe 990 scorecard · same measures for every charity, no grades
| Measure | FY2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 84.3% | 85.6% |
| Management & general Part IX 25(C) ÷ 25(A) | 7.6% | 13.7% |
| Fundraising Part IX 25(D) ÷ 25(A) | 8.0% | 0.0% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.11 | $0.00 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 73.9% | 1.3% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 0.1% |
| Program service revenue share Part VIII 2g ÷ 12 | 2.4% | 93.7% |
| Highest reported compensation Part VII-A, columns D–F | $377,503 | $975,831 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 2.70% | 1.34% |
| People paid over $100,000 Part VII, line 2 | 6 | 27 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 37.8 | 6.6 |
| Independent voting board members Part VI 1a–1b | 11 of 11 | 88.9% |
A median is context, not a target: hospitals, universities, food banks and grantmakers spend in very different ways. What these measures can and can't tell you.
What the money paid for, in its own words
FY2025 · Form 990, Part III · the three largest programs by expenseAlpha-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. The foundation's mission is served by scientific meetings that bring together stakeholders with the intent to promote scientific discovery, identify new approaches to the detection of alpha-1, and educate physicians and patients on alpha-1. The alpha-1 grants and awards program is the heart of the foundation's…
Alpha-1 national conference: the 34th annual alpha-1 national educational conference was held on june 6-8, 2025. As the largest annual gathering of the alpha-1 community, the national conference provides important opportunities for networking, education, and advocacy. The speakers included some of the leading clinicians and researchers in the alpha-1 field to bring incredible subject matter expertise and education to the community. The program covered a wide range of medical education and supportive topics to inform, empower and motivate patients to take charge of their health. The last six…
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. The goal of the alpha-1 coded testing (act) study is to provide a way for those at risk, including family members of diagnosed alphas, to learn their genotype. The study includes a research questionnaire, a fingerstick testing kit, and is free and confidential
Highest reported compensation
FY2025 · Form 990, Part VII, Section A · roles as filed; names are in the filing, not here| Role | From this org | From related orgs | Other | Total |
|---|---|---|---|---|
| PRESIDENT AND CEO Officer, 40.0 hrs/week | $352,414 | $0 | $25,089 | $377,503 |
| SENIOR DIRECTOR OF RESEARCH PROGRAMS Highest compensated employee, 40.0 hrs/week | $158,473 | $0 | $22,920 | $181,393 |
| SENIOR DIRECTOR OF CORPORATE RELATIONS Highest compensated employee, 40.0 hrs/week | $135,996 | $0 | $21,725 | $157,721 |
| SENIOR DIRECTOR OF COMMUNICATIONS Highest compensated employee, 40.0 hrs/week | $110,591 | $0 | $29,808 | $140,399 |
| SENIOR DEVELOPMENT DIRECTOR Highest compensated employee, 40.0 hrs/week | $136,689 | $0 | $3,028 | $139,717 |
| SEN DIRECTOR OF EXECUTIVE OPERATIONS & SCIENTIFIC EVENTS Highest compensated employee, 40.0 hrs/week | $107,310 | $0 | $17,264 | $124,574 |
| CFO Officer, 10.0 hrs/week | $100,000 | $0 | $0 | $100,000 |
6 people received more than $100,000 in reportable compensation from ALPHA-1 Foundation (Part VII, line 2). Compensation of current officers, directors and key employees totaled $478K (Part IX, line 5).
5 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
FY2025 · the organization's own yes/no answers; explanations, if any, are in Schedule O of the filing · what each means- Voting board members, and how many are independent Part VI, lines 1a–1b11 · 11 independent
- Audited financial statements Part XII 2bYes
- Conflict-of-interest policy Part VI 12aYes
- Whistleblower policy Part VI 13Yes
- Document retention policy Part VI 14Yes
- Independent process for top executive pay Part VI 15aYes
- Board given the 990 before filing Part VI 11aYes
- Family or business ties among insiders Part VI 2No
- Aware of a significant diversion of assets Part VI 5No
- Excess benefit transaction with an insider Part IV 25aNo
- Loans to or from insiders outstanding Part IV 26No
- Lobbying, or a 501(h) election in effect Part IV 4Yes
- Over $15,000 of professional fundraising services Part IV 18No
- Over $10,000 of activity outside the U.S. Part IV 14bYes
- Employees Part I, line 523
- Volunteers Part I, line 6300
Largest outside contractors
FY2025 · Form 990, Part VII, Section B · businesses only| STRATISHIFT CONSULTING LLC Consulting | $601,371 |
| CROWELL & MORING LLP Legal services | $388,479 |
| SIGHT & SOUND PRODUCTIONS LLC Video production | $350,747 |
| ALPHANET INC Management services | $344,699 |
| EDWARDS-HUNT GROUP LLC Consulting services | $303,664 |
Individuals listed as contractors are left out. 8 contractors were paid more than $100,000 in all.
Private foundation grants it received
9 private foundations reported grants to ALPHA-1 Foundation totaling $45,335 on their tax year 2023 Form 990-PF returns. See which foundations, on WHOFUNDS.
Source: WHOFUNDS open grant graph, matched from Form 990-PF Part XV.
Correct a figure or respond
Every number above is copied from ALPHA-1 Foundation's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for ALPHA-1 Foundation, you can publish a response that is linked from this page.
Share or embed this breakdown
Of every $100 ALPHA-1 Foundation spent in FY2025, $84.33 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of ALPHA-1 Foundation's spending goes to programs?
In the fiscal year ending June 30, 2025, ALPHA-1 Foundation reported that 84.3% of its $14.0 million in expenses went to program services, 7.6% to management and general and 8.0% to fundraising (Form 990, Part IX).
How much does ALPHA-1 Foundation pay its top executive?
The largest total compensation ALPHA-1 Foundation reported for one person in the fiscal year ending June 30, 2025 was $377,503, for the role of PRESIDENT AND CEO (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does ALPHA-1 Foundation get its money?
Of $13.8 million in revenue in the fiscal year ending June 30, 2025, 73.9% came from contributions and grants and 2.4% from program service revenue (Form 990, Part VIII).
Is ALPHA-1 Foundation a registered charity?
The IRS lists EIN 65-0585415 as a 501(c)(3) organization (publicly supported organization (170(b)(1)(a)(vi))), and its records show contributions as tax-deductible. Form 990 filings on record here cover tax years 2020, 2021, 2022, 2023, 2024. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- FY2025: Form 990 for the fiscal year ending June 30, 2025, object 202631359349301803 · read the filing
- FY2024: Form 990 for the fiscal year ending June 30, 2024, object 202511359349305521 · read the filing
- FY2023: Form 990 for the fiscal year ending June 30, 2023, object 202400859349301695 · read the filing
- FY2022: Form 990 for the fiscal year ending June 30, 2022, object 202330479349300533 · read the filing
- FY2021: Form 990 for the fiscal year ending June 30, 2021, object 202240639349301009 · read the filing
All filings for EIN 65-0585415: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.