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Alpha-1 Foundation Inc

EIN 65-0585415 · Coral Gables, FL

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong93 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$13.8 million
Spending
$14.0 million
Spent on programs
84%
Reserves
35.4 months of spending
Largest source of income
donations and private grants, 74%
Employees
23
Volunteers
300
Highest pay
$377,503, president and ceo

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 93 out of 100. Higher than 85% of charities in its peer group (health care, $10m to $100m).

  • Reserves

    35 of 35

    Spendable reserves would cover 35.4 months of spending.

  • Debt

    20 of 20

    It owes 7% of what it owns.

  • Living within its means

    8 of 15

    Spending exceeded income by 2% of income.

  • Income trend

    15 of 15

    Income rose 18% on the year before.

  • Spending floor

    15 of 15

    84% of spending went to programs and raising each dollar of donations cost 11 cents.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 52% of charities in its peer group (health care, $10m to $100m).

  • Independent board

    25 of 25

    11 of 11 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (13)
  1. $5.8 million spent. 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.
  2. $1.3 million spent. ALPHA-1 NATIONAL CONFERENCE: THE 34TH ANNUAL ALPHA-1 NATIONAL EDUCATIONAL CONFERENCE WAS HELD ON JUNE 6-8, 2025. 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.
  3. $641,781 spent. 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 FINGERSTICK TESTING KIT, AND IS FREE AND CONFIDENTIAL.
  4. $526,408 spent. ALPHA-1 EDUCATION DAYS PROVIDE ACCESS TO CURRENT MEDICAL INFORMATION AND RESOURCES TO HUNDREDS OF ALPHAS, THEIR FAMILIES, AND CAREGIVERS.
  5. $2.4 million spent. OTHER ALPHA-1 SERVICES INCLUDE PATIENT EDUCATION (MATERIALS, WEBSITE, ETC), A PATIENT SUPPORT NETWORK, AND A TARGETED DETECTION PROGRAM.
  6. $411,454 spent. THE MISSION OF ALPHA-1 GLOBAL IS TO DEVELOP A COLLABORATIVE GLOBAL NETWORK OF ALPHA-1 PATIENT LEADERS, PHYSICIANS, AND RESEARCHERS.
  7. $349,323 spent. THE ALPHA-1-TO-ONE MAGAZINE IS DESIGNED TO INFORM THE COMMUNITY OF RESEARCH DEVELOPMENTS, EDUCATION, ADVOCACY AND FUNDRAISING OPPORTUNITIES.
  8. $281,906 spent. THE FOUNDATION'S PUBLIC POLICY PROGRAM MONITORS RELEVANT LEGISLATION AND REGULATORY ISSUES AND PUBLICIZES THE FOUNDATION'S POSITIONS ON SUCH ISSUES.
  9. (Expenses $ 526,408 including grants of $ 0)(Revenue $ 0) ALPHA-1 EDUCATION DAYS PROVIDE ACCESS TO CURRENT MEDICAL INFORMATION AND RESOURCES TO HUNDREDS OF ALPHAS, THEIR FAMILIES, AND CAREGIVERS.
  10. (Expenses $ 2,435,566 including grants of $ 0)(Revenue $ 0) OTHER ALPHA-1 SERVICES INCLUDE PATIENT EDUCATION (MATERIALS, WEBSITE, ETC), A PATIENT SUPPORT NETWORK, AND A TARGETED DETECTION PROGRAM.
  11. (Expenses $ 411,454 including grants of $ 0)(Revenue $ 0) THE MISSION OF ALPHA-1 GLOBAL IS TO DEVELOP A COLLABORATIVE GLOBAL NETWORK OF ALPHA-1 PATIENT LEADERS, PHYSICIANS, AND RESEARCHERS.
  12. (Expenses $ 349,323 including grants of $ 0)(Revenue $ 0) THE ALPHA-1-TO-ONE MAGAZINE IS DESIGNED TO INFORM THE COMMUNITY OF RESEARCH DEVELOPMENTS, EDUCATION, ADVOCACY AND FUNDRAISING OPPORTUNITIES.
  13. (Expenses $ 281,906 including grants of $ 0)(Revenue $ 0) THE FOUNDATION'S PUBLIC POLICY PROGRAM MONITORS RELEVANT LEGISLATION AND REGULATORY ISSUES AND PUBLICIZES THE FOUNDATION'S POSITIONS ON SUCH ISSUES.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending June 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since March 1996.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.