Skip to content
Nonprofiteer
← ALPHA-1 FOUNDATION INC

Form 990 for tax year 2023

Filed by ALPHA-1 FOUNDATION INC.

Totals

Total revenue
$11,614,380
Total expenses
$10,093,036
Contributions and grants received
$8,897,971
Grants paid
$3,230,157
Program service revenue
$373,667
Investment income
$2,181,265
Other revenue
$161,477
Total assets, end of year
$44,464,081
Total liabilities, end of year
$2,581,193
Net assets or fund balances, end of year
$41,882,888
Program services expenses (Part IX)
$8,468,966
Management and general expenses
$632,669
Fundraising expenses
$991,401
Program service expenses (Part III)
$8,468,966

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

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1a · Federated campaigns

    $0

  • 1b · Membership dues

    $0

  • 1c · Fundraising events

    $0

  • 1d · Related organizations

    $0

  • 1e · Government grants (contributions)

    $0

  • 1f · All other contributions, gifts and grants

    $8,897,971

  • 1g · Noncash contributions included above

    $25,310

  • 2a · Program service revenue: Publication Income

    total $373,667 · related or exempt $0 · unrelated business $373,667 · excluded $0

  • 2f · All other program service revenue

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 3 · Investment income

    total $939,887 · related or exempt $939,887 · unrelated business $0 · excluded $0

  • 4 · Income from investment of tax-exempt bond proceeds

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 5 · Royalties

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 6a · Gross rents

    real property $6,580 · personal property $0

  • 6b · Less rental expenses

    real property $0 · personal property $0

  • 6c · Rental income or loss

    real property $6,580 · personal property $0

  • 6d · Net rental income or loss

    total $6,580 · related or exempt $6,580 · unrelated business $0 · excluded $0

  • 7a · Gross sales of assets other than inventory

    securities $21,858,360 · other assets $0

  • 7b · Less cost or other basis and sales expenses

    securities $20,616,982 · other assets $0

  • 7c · Gain or loss

    securities $1,241,378 · other assets $0

  • 7d · Net gain or loss

    total $1,241,378 · related or exempt $1,241,378 · unrelated business $0 · excluded $0

  • 8a · Fundraising events: gross income

    $334,116

  • 8a · Fundraising events: contributions included on line 1c

    $0

  • 8b · Fundraising events: direct expenses

    $179,219

  • 8c · Net income from fundraising events

    total $154,897 · unrelated business $0 · excluded $154,897

  • 9a · Gaming: gross income

    $0

  • 9b · Gaming: direct expenses

    $0

  • 9c · Net income from gaming

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 10a · Gross sales of inventory

    $0

  • 10b · Cost of goods sold

    $0

  • 10c · Net income from sales of inventory

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 11e · Other revenue, total

    $0

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $2,226,492 · program services $2,226,492

  • 2 · Grants to domestic individuals

    total $50,000 · program services $50,000

  • 3 · Grants to foreign organizations and individuals

    total $953,665 · program services $953,665

  • 7 · Other salaries and wages

    total $1,825,860 · program services $1,444,939 · management and general $35,982 · fundraising $344,939

  • 8 · Pension plan contributions

    total $46,619 · program services $35,401 · management and general $1,416 · fundraising $9,802

  • 9 · Other employee benefits

    total $245,870 · program services $214,324 · management and general $2,637 · fundraising $28,909

  • 10 · Payroll taxes

    total $127,574 · program services $100,840 · management and general $2,539 · fundraising $24,195

  • 11a · Fees: management

    total $162,500 · program services $0 · management and general $162,500 · fundraising $0

  • 11b · Fees: legal

    total $408,771 · program services $381,611 · management and general $24,268 · fundraising $2,892

  • 11c · Fees: accounting

    total $89,845 · program services $0 · management and general $89,845 · fundraising $0

  • 11d · Fees: lobbying

    total $61,500 · program services $61,500 · management and general $0 · fundraising $0

  • 11e · Fees: professional fundraising services

    total $0 · fundraising $0

  • 11f · Fees: investment management

    total $0

  • 11g · Fees: other

    total $860,265 · program services $780,321 · management and general $63,766 · fundraising $16,178

  • 13 · Office expenses

    total $468,854 · program services $305,704 · management and general $39,820 · fundraising $123,330

  • 14 · Information technology

    total $466,162 · program services $458,838 · management and general $981 · fundraising $6,343

  • 16 · Occupancy

    total $49,779 · program services $0 · management and general $6,900 · fundraising $42,879

  • 17 · Travel

    total $332,747 · program services $256,875 · management and general $49,682 · fundraising $26,190

  • 19 · Conferences, conventions and meetings

    total $1,453,803 · program services $1,090,509 · management and general $96,803 · fundraising $266,491

  • 22 · Depreciation, depletion and amortization

    total $5,281 · program services $4,133 · management and general $159 · fundraising $989

  • 23 · Insurance

    total $32,959 · program services $23,710 · management and general $3,576 · fundraising $5,673

  • 24a · Other expenses: Telephone

    total $25,085 · program services $18,735 · management and general $520 · fundraising $5,830

  • 24b · Other expenses: Repairs and Maintenance

    total $25,524 · program services $19,975 · management and general $769 · fundraising $4,780

  • 24c · Other expenses: Dues and subscriptions

    total $102,253 · program services $35,155 · management and general $26,523 · fundraising $40,575

  • 24d · Other expenses: Licenses, Fees and Taxes

    total $63,656 · program services $0 · management and general $23,743 · fundraising $39,913

  • 24e · All other expenses

    total $7,972 · program services $6,239 · management and general $240 · fundraising $1,493

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,200,391 · end of year $992,958

  • 2 · Savings and temporary cash investments

    beginning of year $508,112 · end of year $1,052,795

  • 3 · Pledges and grants receivable

    beginning of year $0

  • 4 · Accounts receivable

    beginning of year $949,746 · end of year $921,723

  • 5 · Loans and receivables from officers and key people

    beginning of year $0 · end of year $0

  • 6 · Loans and receivables from disqualified persons

    beginning of year $0 · end of year $0

  • 7 · Other notes and loans receivable

    beginning of year $0 · end of year $0

  • 8 · Inventories for sale or use

    beginning of year $0 · end of year $0

  • 9 · Prepaid expenses and deferred charges

    beginning of year $86,986 · end of year $195,920

  • 10a · Land, buildings and equipment: cost or other basis

    $424,073

  • 10b · Land, buildings and equipment: accumulated depreciation

    $413,368

  • 10c · Land, buildings and equipment, net

    beginning of year $9,752 · end of year $10,705

  • 11 · Investments: publicly traded securities

    beginning of year $34,601,529 · end of year $39,774,063

  • 12 · Investments: other securities

    beginning of year $0 · end of year $0

  • 13 · Investments: program-related

    beginning of year $281,138 · end of year $1,490,917

  • 14 · Intangible assets

    beginning of year $0 · end of year $0

  • 15 · Other assets

    beginning of year $25,000 · end of year $25,000

  • 17 · Accounts payable and accrued expenses

    beginning of year $705,296 · end of year $1,000,326

  • 18 · Grants payable

    beginning of year $890,392 · end of year $941,034

  • 19 · Deferred revenue

    beginning of year $561,500 · end of year $639,833

  • 20 · Tax-exempt bond liabilities

    beginning of year $0

  • 21 · Escrow or custodial account liability

    beginning of year $0

  • 22 · Loans and payables to officers and key people

    beginning of year $0

  • 23 · Secured mortgages and notes payable

    beginning of year $0

  • 24 · Unsecured notes and loans payable

    beginning of year $0

  • 25 · Other liabilities

    beginning of year $0 · end of year $0

  • 27 · Net assets without donor restrictions

    beginning of year $33,095,472 · end of year $39,896,406

  • 28 · Net assets with donor restrictions

    beginning of year $2,409,994 · end of year $1,986,482

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.

Listed in Part VII

  • 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.

Schedule J

Answered yes

  • 3 · Compensation committee
  • 3 · Independent compensation consultant
  • 3 · Form 990 of other organizations
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

Schedule J, Part II
AlphaNet, Inc., another 501 (c) (3) organization, provided the fiscal 2024 services of the CFO under an administrative services agreement in the amount of $100,000. the amount is based on a reasonable estimate of the services provided to the Alpha-1 Foundation.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

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

Taxable family on this return

Schedule R Parts I, III and IV, as filed. These record ownership and control, not shared board members or money moved.

Related corporations and trusts

Part IV: related organizations taxable as a corporation or trust.

  • The Alpha-1 Project

    C · Drug therapies · FL · 100% owned · controlled entity

    Directly controlled by Alpha-1 Foundation

Provenance

Return type
form_990
Tax year
2023
Filed
15 May 2025
IRS schema version
2023v6.0
Source object
202511359349305521

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.