Alpha-1 Foundation
Meets Standards

Standards For Charity Accountability
Governance
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Board Oversight
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Board Size
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Board Meetings
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Board Compensation
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Conflict of Interest
Measuring Effectiveness
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Effectiveness Policy
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Effectiveness Report
Finances
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Program Expenses
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Fundraising Expenses
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Accumulating Funds
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Audit Report
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Detailed Expense Breakdown
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Accurate Expense Reporting
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Budget Plan
Fundraising & Info
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Truthful Materials
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Annual Report
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Website Disclosures
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Donor Privacy
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Cause Marketing Disclosures
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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).
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