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ALPHA-1 FOUNDATION INC

EIN 65-0585415 CORAL GABLES, FL

Revenue 2023
$11,614,380
Expenses 2023
$10,093,036

Program services were 83.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
E70
Classification
2000
Street
3300 PONCE DE LEON BLVD

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2023

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.

Activities or mission (Part I)

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of Alphas worldwide.

  • 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.

    Expenses $4,056,006 · Grants $2,179,284 · Revenue $973,984

  • 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 finger-stick testing kit, and is free and confidential.

    Expenses $618,350 · Grants $258,600 · Revenue $255,000

  • Alpha-1 National Conference: The 33rd annual Alpha-1 National Educational Conference was a hybrid conference held on June 7-9, 2024. 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.

    Expenses $877,911 · Grants $10,400 · Revenue $1,048,462

  • Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers.

    Expenses $481,462 · Revenue $302,500

  • The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues.

    Expenses $301,529 · Grants $25,000 · Revenue $260,000

  • Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program.

    Expenses $2,133,708 · Revenue $1,184,704

As filed on the 2023 return.

Officers and directors · 2023

As listed in Part VII of the 2023 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Scott Santarella

    President and CEO

    Total calculated
    $356,097
    From this org
    $330,774
    From related orgs
    $0
    Other
    $25,323
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $330,774
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $25,323
    Filer's total
    $356,097

  • Randel H Plant

    Sen Dir Research Progs

    Total calculated
    $155,675
    From this org
    $143,033
    From related orgs
    $0
    Other
    $12,642
    Hours/week
    40

  • Angela T McBride

    Sen Dir Corp Relations

    Total calculated
    $145,969
    From this org
    $127,368
    From related orgs
    $0
    Other
    $18,601
    Hours/week
    40

  • Linda Rodriguez

    Development Director

    Total calculated
    $128,731
    From this org
    $122,295
    From related orgs
    $0
    Other
    $6,436
    Hours/week
    40

  • Jeanne Kushner

    Sr Dir of Communications

    Total calculated
    $128,045
    From this org
    $100,532
    From related orgs
    $0
    Other
    $27,513
    Hours/week
    40

  • Darrell Kotton

    Director

    Total calculated
    $0
    Hours/week
    4

  • Virginia Clark

    Physician Director

    Total calculated
    $0
    Hours/week
    8

  • Fred C Walsh

    Vice Chair

    Total calculated
    $0
    Hours/week
    8

  • Jennifer Jopp

    Director

    Total calculated
    $0
    Hours/week
    4

  • Jon Hagstrom

    Chair

    Total calculated
    $0
    Hours/week
    8

  • Kenneth Irvine

    Treasurer

    Total calculated
    $0
    Hours/week
    8

  • Peggy Iverson

    Secretary

    Total calculated
    $0
    Hours/week
    8

  • Ann Knebel

    Director

    Total calculated
    $0
    Hours/week
    4

  • Noel G McElvaney

    Director

    Total calculated
    $0
    Hours/week
    4

  • Faron Schonfeld

    Director

    Total calculated
    $0
    Hours/week
    4

  • Mark Brantly

    Director

    Total calculated
    $0
    Hours/week
    4

  • Catherine Vernon

    Director

    Total calculated
    $0
    Hours/week
    4

  • Mark B Delvaux

    CFO

    Total calculated
    $0
    Hours/week
    10

    Schedule J breakdown matched by us

    Base
    $0
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $0

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2023
    Revenue
    $11,614,380
    Expenses
    $10,093,036
    Contributions
    $8,897,971
    Grants paid
    $3,230,157
  • 2022
    Revenue
    $10,453,299
    Expenses
    $8,547,943
    Contributions
    $8,383,940
    Grants paid
    $2,483,684

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2023 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2022 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2021 · 990

    Revenue
    $10,890,084
    Expenses
    $6,364,206
    Assets (EOY)
    $35,496,616

  • 2021 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2020 · 990

    Revenue
    $10,942,439
    Expenses
    $6,256,103
    Assets (EOY)
    $34,603,486

  • 2020 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Grants made

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Taxable family

From Schedule R Parts I, III and IV: entities that legally are the filer, and taxable partnerships, corporations and trusts it is related to. These record ownership and control, not shared board members or money.

Related corporations and trusts on its 2023 return

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 26 October 2026, for every organization at once. Returns through tax year 2023, the newest we have parsed for this organization.