Give.org logo
Support Give.org
Support Give.org
CHARITY REVIEW
Issued: July 2024 Expires: July 2026

Alpha-1 Foundation

Accredited Charity
Accredited Charity

Meets Standards
Accreditation seal
(877) 228-7321
3300 Ponce de Leon Boulevard
Coral Gables, FL, 33134
https://www.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) offers 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 reports that it provides extensive information on Alpha-1 testing, diagnosis, symptoms, and treatment. A1F also offers a support line, genetic counseling program, and peer guide program for those who have been affected by Alpha-1. To date, the Foundation has invested $92 million to support Alpha-1 Antitrypsin Deficiency research and programs at 128 institutions in North America, Europe, the Middle East and Australia. The organization also reports that it plays an active role in promoting Alpha-1 research and developing new therapies to treat people with Alpha-1, fostering collaborations with investigators throughout the United States and Europe. A1F 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 Alpha-1 and its symptoms.

For the year ended June 30, 2023, Alpha-1 Foundation's program expenses were:

Research and clinical studies $4,109,175
Patient education $2,226,810
Patient advocacy $747,329
The Alpha-1 Project $115,050
Total Program Expenses $7,198,364

Chief Executive
Scott T. Santarella, President and Chief Executive Officer

Compensation*
$77,344

Chair of the Board
Jon Hagstrom

Chair's Profession / Business Affiliation
Alpha-1 advocate

Board Size
13

Paid Staff Size
18

*2022 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances. According to the organization's IRS Form 990 for the year ended June 30, 2022, former President and Chief Executive Officer Miriam A. O'Day was also compensated $191,560.

Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Radio, Special events

Fundraising costs were 10% of related contributions. (Related contributions, which totaled $8,575,396, 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 for the year ended June 30, 2023.

Source of Funds
Donated securities $36,252
Fundraising revenues $155,204
In-kind rental income $215,000
Other income $377,140
Interest and dividends $690,915
Realized and unrealized investment gains, net $1,630,763
Contributions, bequests and grant revenues $8,168,940
Total Income $11,274,214

Programs: 83% Fundraising: 10% Administrative: 7%

Total Income $11,274,214
Total expenses: $8,641,644
  Program expenses $7,198,364
  Fundraising expenses $822,817
  Administrative expenses $620,463
  Other expenses $0
Income in Excess of Expenses $2,632,570
Beginning Net Assets $32,872,896
Other Changes In Net Assets $0
Ending Net Assets $35,505,466
Total Liabilities $2,157,832
Total Assets $37,663,298

Note: According to the organization's audited financial statements for the year ended June 30, 2023, A1F received in-kind contributions totaling $251,252 in the form of rent ($215,000) and donated securities ($36,252).

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