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CHARITY REVIEW
Issued: July 2026 Expires: July 2028

Alpha-1 Foundation

Accredited Charity
Accredited Charity

Meets Standards
(877) 228-7321
3300 Ponce de Leon Boulevard
Coral Gables, FL, 33134
https://alpha1.org/
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Alpha-1 Foundation meets the 20 Standards for Charity Accountability.

Stated Purpose:
"to find a cure for Alpha-1 Antitrypsin Deficiency and to improve the lives of people affected by Alpha-1 worldwide."

Year, State Incorporated:
1995, FL

Alpha-1 Foundation (A1F) provides programs and services to people living with Alpha-1, their friends and families, Alpha-1 carriers, healthcare providers treating patients with Alpha-1, and researchers working on a cure for Alpha-1. The organization states that it provides information on Alpha-1 testing, diagnosis, symptoms, and treatment. A1F also offers a support line, a genetic counseling program, and a peer guide program for those who have been affected by Alpha-1. In addition, A1F states that it promotes research to treat people with Alpha-1 and fosters collaborations with investigators throughout the United States and Europe. As of 2024, the organization reports that it has invested $100 million to support Alpha-1 Antitrypsin Deficiency research and programs at 130 institutions in North America, Europe, the Middle East and Australia. The organization also works closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), people affected by Alpha-1, and the pharmaceutical industry to develop new and improved therapies to treat the condition and its symptoms.

For the year ended June 30, 2025, Alpha-1 Foundation's program expenses were:

Research and clinical studies $7,509,268
Patient education $3,768,790
Patient advocacy $693,362
The Alpha-1 Project $13,189
Total Program Expenses $11,984,609

Chief Executive
Scott Santarella, President and Chief Executive Officer

Compensation*
$356,097

Chair of the Board
Jon Hagstrom

Chair's Profession / Business Affiliation
Patient Representative, Alpha-1 Foundation

Board Size
13

Paid Staff Size
28

*2023 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Invitations to fund raising events, Print advertisements (newspapers, magazines, etc.), Grant proposals, Internet, Planned giving arrangements, Membership appeals, Workplace Giving

Fundraising costs were 12% of related contributions. (Related contributions, which totaled $10,387,291, are donations received as a result of fundraising activities.)

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on Alpha-1 Foundation's audited financial statements - consolidated for the year ended June 30, 2025.

Source of Funds
Contributions, bequests and grant revenues $9,869,916
Investment return, net $4,431,090
Interest and dividends $974,402
Other income $468,844
Fundraising revenues $287,375
In-kind rental income $230,000
Total Income $16,261,627

Programs: 85% Fundraising: 9% Administrative: 6%

Total Income $16,261,627
Total expenses: $14,117,605
  Program expenses $11,984,609
  Fundraising expenses $1,249,952
  Administrative expenses $883,044
  Other expenses $0
Income in Excess of Expenses $2,144,022
Beginning Net Assets $41,882,888
Other Changes In Net Assets $0
Ending Net Assets $44,026,910
Total Liabilities $3,429,179
Total Assets $47,456,089

Note: According to the organization's consolidated audited financial statements for the year ended June 30, 2025, A1F received in-kind contributions totaling $230,000 in the form of rent for office space.

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

RELATED CONTENT

Report completed by:
BBB Wise Giving Alliance