Florida · Nonprofit
ALPHA-1 FOUNDATION INC
ALPHA-1 FOUNDATION INC (Florida) receives grants from 59 organizations whose IRS filings report $12,703,863 to it, the largest being ALPHANET INC ($11,010,000). 29 of them have funded it in more than one year.
- Revenue FY2025
- $14M
- Funders on record
- 59
- Grants received
- $13M
- Net assets
- $44M
What Alpha-1 Foundation Inc does
Mission
The alpha-1 foundation is committed to finding a cure for alpha-1 antitrypsin deficiency and to improving the lives of people affected by alpha-1 worldwide.
As stated on its FY2025 Form 990.
Programs
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. 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 research activities and has established itself as the worldwide leader of alpha-1 research support.
$5,839,029 spentof which $2,950,012 as grants50% of program spendingAlpha-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 years of presentations are available on the foundation's website at www.alpha1.org.
$1,305,234 spent11% of program spendingAlpha-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.
$641,781 spentof which $249,000 as grants5% of program spendingAlpha-1 education days provide access to current medical information and resources to hundreds of alphas, their families, and caregivers.
$526,408 spent4% of program spendingOther alpha-1 services include patient education (materials, website, etc), a patient support network, and a targeted detection program.
$2,435,566 spent21% of program spendingThe mission of alpha-1 global is to develop a collaborative global network of alpha-1 patient leaders, physicians, and researchers.
$411,454 spent3% of program spendingThe alpha-1-to-one magazine is designed to inform the community of research developments, education, advocacy and fundraising opportunities.
$349,323 spent3% of program spendingThe foundation's public policy program monitors relevant legislation and regulatory issues and publicizes the foundation's positions on such issues.
$281,906 spent2% of program spending
The 8 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $11,790,701.
The organization over time
Each line starts at 100 in 2021, so what you read is the shape rather than the size: 150 means half as much again as 2021, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $38M to $44M (+18%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
74% of ALPHA-1 FOUNDATION INC’s revenue is contributions — more reliant on donations than three-quarters of its peers (7% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 5 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Scott Santarella
President and CEO
Board chair
Jon Hagstrom
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 15 funders to 19 funders, grant income rose $45k → $2.4M.
12 of 59 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 10% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of ALPHA-1 FOUNDATION INC’s funders (the co-funder graph). Top 30 of 59 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
ALPHA-1 FOUNDATION INC leans on a few funders — its largest provides 87% of grant income and the top three 94%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
97% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund ALPHA-1 FOUNDATION INC.
Largest funder’s share by year: 2017 22% · 2018 77% · 2019 49% · 2020 68% · 2021 91% · 2022 91% · 2023 92% — growing more concentrated.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
25% of ALPHA-1 FOUNDATION INC's funders are still giving 3 years after their first grant; 49% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
96% of ALPHA-1 FOUNDATION INC's grant income comes from Florida funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.3M arriving through sponsors registered in 11 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
ALPHA-1 FOUNDATION INC is better cushioned than half of the 2,843 health nonprofits its size.
this organization peer median middle 50% of peers· 2,843 health nonprofits $10M–$100M, FY2025
Government funding ALPHA-1 FOUNDATION INC receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $2k on record.
- REFUNDS - GENERAL $2k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like ALPHA-1 FOUNDATION INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Florida
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
84% of spending goes to programs.
Governance
Public support
29%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 29 states
Part of a family of 2 related entities
- Alpha Detect LLC · disregarded
- The Alpha-1 Project Inc · corp_trust
Screen this organization
A dated, signed PDF of the compliance screen for ALPHA-1 FOUNDATION INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds ALPHA-1 FOUNDATION INC?
- ALPHA-1 FOUNDATION INC (Florida) receives grants from 59 organizations whose IRS filings report $12,703,863 to it, the largest being ALPHANET INC ($11,010,000). 29 of them have funded it in more than one year.
- How many funders does ALPHA-1 FOUNDATION INC have?
- IRS filings report 59 organizations giving $12,703,863 in grants to ALPHA-1 FOUNDATION INC, 29 of which have funded it in more than one year.
- Who is the largest funder of ALPHA-1 FOUNDATION INC?
- ALPHANET INC is the largest funder on record, with $11,010,000 in grants. The full list of funders is on this page.
- How can an organization like ALPHA-1 FOUNDATION INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Florida. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2021–2025), and the filings of 59 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing