Alpha-1 Foundation Inc

Nonprofit profile at a glance

EIN
650585415
IRS 990 coverage
2020–2024
Forms available
Form 990 2024, Form 990-T 2024
Location
Coral Gables, FL, USA
Phone
3055679888
Rating
85
Verdict
STRONG
Rating confidence
Standard
Sector
Public Health Program (Includes General Health and Wellness Promotion Services)

Reported finances

Revenue
$13,755,427
Expenses
$13,980,782
Assets
$47,454,771
Liabilities
$3,427,861

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

19 people listed

Executive titles in this filing

  • SCOTT SANTARELLA (PRESIDENT AND CEO)

Highest reported compensation

  • SCOTT SANTARELLA (PRESIDENT AND CEO): $377,503 total reported compensation
  • RANDEL H PLANT (SENIOR DIRECTOR OF RESEARCH PROGRAMS): $181,393 total reported compensation
  • ANGELA T MCBRIDE (SENIOR DIRECTOR OF CORPORATE RELATIONS): $157,721 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2024

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.

Operating model

Revenue model
Donor-supported. 88% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 73% for direct work, and 27% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 87
  • Transparency & Controls: 81
  • Accountability: 95
  • Sustainability: 47
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 84.3%; rating input score 84
  • Fundraising efficiency: $9.04 raised per $1 spent on fundraising; rating input score 35; 35th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 88.9%; rating input score 89; 3rd percentile among comparable filings
  • Pay-setting controls: 6 of 6 controls in place; rating input score 100
    • Compensation committee: Pass
    • Independent consultant: Pass
    • Other Form 990s reviewed: Pass
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 97.7%; rating input score 98; 28th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 66th percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -1.6%; rating input score 24; 24th percentile among comparable filings
  • Total-asset coverage ratio: 3.39; rating input score 78; 78th percentile among comparable filings
  • Liabilities to assets ratio: 0.07; rating input score 79; 79th percentile among comparable filings
  • Officer compensation ratio: 8.7%; rating input score 26; 26th percentile among comparable filings

Growth

  • Program expense growth: 22.4% per year; rating input score 100; 92nd percentile among comparable filings
  • Revenue growth: 5.5% per year; rating input score 100; 48th percentile among comparable filings
  • Asset growth: 8.7% per year; rating input score 100; 59th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 84.3% of spending went to programs
  • Governance: 11 of 11 board members independent · 8 of 9 filing controls reported
  • Programs: 8 filed program accomplishments · $11.8M in reported program spending
  • Leadership: top reported pay $378K · 19 people listed · 6 of 6 pay-setting controls reported
  • Highest-paid contractors: 5 contractors listed · $2M reported
  • Consistency: 38 of 40 current checks pass · 2 findings to review
  • Schedules: 10 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 5 filing years from 2020 to 2024
  • Contacts: How to reach this organization
  • Money network: 26 filed money-flow records
  • Related organizations: 20 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 35/100.
  • High — Sustainability: Operating margin scored 24/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • High — Sustainability: Officer compensation ratio scored 26/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Review — Transparency & Controls: Schedule R controlled transactions itemized did not reconcile in the filed values.