ALPHA-1 FOUNDATION INC

EIN: 650585415 501(c)(3) Health Care

Miami, FL

Total Revenue
$11,614,380
Total Expenses
$10,093,036
Total Assets
$44,464,081
Net Assets
$41,882,888
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Financial Trends

Organization Details

Formation Year
1995
Legal Domicile
FL
Principal Officer
Scott Santarella
Phone
3055679888
Tax Period
2023-07-01 to 2024-06-30

ALPHA-1 FOUNDATION INC, founded in 1995, is a mid-sized nonprofit in the Health Care sector that reported $11.6M in total revenue in fiscal year 2023. Revenue grew 11% year-over-year, indicating healthy expansion. Expenses of $10.1M left a modest 13% surplus.

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.

Program Service Accomplishments

Program 1
Expenses: $4,056,006 Revenue: $973,984

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...

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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 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.

Program 2
Expenses: $618,350 Revenue: $255,000

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...

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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.

Program 3
Expenses: $877,911 Revenue: $1,048,462

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...

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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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $8,897,971
Program Service Revenue $373,667
Investment Income $2,181,265
Other Revenue $161,477
TOTAL REVENUE $11,614,380

Expense Breakdown

Grants Paid $3,230,157
Salaries & Benefits $2,245,923
Fundraising Expenses $991,401
Program Expenses $8,468,966
Other Expenses $4,616,956
TOTAL EXPENSES $10,093,036

Year-over-Year Comparison

2023 2022 Change
Revenue $11,614,380 $10,453,299 +0.1%
Expenses $10,093,036 $8,547,943 +0.2%
Net Income $1,521,344 $1,905,356 -0.2%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
13
Independent Members
13
Employees
19
Volunteers
300

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
7
$356,097
Total Directors
12
$0
Key Employees
0
$0
Highest Compensated
4
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Scott Santarella President and CEO 40
Officer
$330,774 $25,323 $356,097
Randel H Plant Sen Dir Research Progs 40
Highest
$143,033 $12,642 $155,675
Angela T McBride Sen Dir Corp Relations 40
Highest
$127,368 $18,601 $145,969
Linda Rodriguez Development Director 40
Highest
$122,295 $6,436 $128,731
Jeanne Kushner Sr Dir of Communications 40
Highest
$100,532 $27,513 $128,045
Darrell Kotton Director 4
Director
$0 $0 $0
Virginia Clark Physician Director 8
Officer Director
$0 $0 $0
Fred C Walsh Vice Chair 8
Officer Director
$0 $0 $0
Jennifer Jopp Director 4
Director
$0 $0 $0
Jon Hagstrom Chair 8
Officer Director
$0 $0 $0
Kenneth Irvine Treasurer 8
Officer Director
$0 $0 $0
Peggy Iverson Secretary 8
Officer Director
$0 $0 $0
Ann Knebel Director 4
Director
$0 $0 $0
Noel G McElvaney Director 4
Director
$0 $0 $0
Faron Schonfeld Director 4
Director
$0 $0 $0
Mark Brantly Director 4
Director
$0 $0 $0
Catherine Vernon Director 4
Director
$0 $0 $0
Mark B Delvaux CFO 10
Officer
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 No data No data No data No data
2024 $11,614,380 $10,093,036 $44,464,081 $1,521,344
2023 $10,453,299 $8,547,943 $37,662,654 $1,905,356
2022 $10,890,084 $6,364,206 $35,496,616 $4,525,878
2021 $10,942,439 $6,256,103 $34,603,486 $4,686,336
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