EIN 65-0585415

Alpha-1 Foundation Alpha One Foundation

IRS 501(c) type
Num. employees
Year formed
Most recent tax filings
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.
Also known as...
Alpha-1 Foundation; Alphanet
Total revenues
Total expenses
Total assets
Num. employees

Program areas at Alpha-1 Foundation Alpha One Foundation

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 Reource 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.
Alpha-1 National Conference: The 32nd annual Alpha-1 National Educational Conference was a hybrid conference held on June 9-11, 2023. 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.
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 finger-stick testing kit, and is free and confidential.
The mission of Alpha-1 Global is to develop a collaborative global network of Alpha-1 patient leaders, physicians, and researchers.
The Alpha-1-To-One Magazine is designed to inform the community of research developments, education, advocacy and fund raising opportunities.
Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers.
The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues.
Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program.

Grants made by Alpha-1 Foundation Alpha One Foundation

GranteeGrant descriptionAmount
Collier County 4 H AssociationResearch$457,398
Partners Healthcare System / Brigham & Womens Hospital IncResearch$199,000
Trustees of Boston UniversityResearch$146,433
...and 11 more grants made

Who funds Alpha-1 Foundation Alpha One Foundation

Grants from foundations and other nonprofits
AlphaNet IncorporatedUnrestricted$2,542,500
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$134,100
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$134,100
...and 31 more grants received totalling $2,911,581

Personnel at Alpha-1 Foundation Alpha One Foundation

Scott SantarellaPresident and Chief Executive Officer$315,753
Mark DelvauxChief Financial Officer$0
Adriana de ArceDirector of Executive Operations and Scientific Events
Alexis Artiles OjedaDirector of Marketing and Events
Jeanne KushnerDirector of Communications and Public Affairs
...and 22 more key personnel

Financials for Alpha-1 Foundation Alpha One Foundation

RevenuesFYE 06/2023
Total grants, contributions, etc.$8,383,940
Program services$368,000
Investment income and dividends$690,915
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$9,140
Net gain from sale of non-inventory assets$937,365
Net income from fundraising events$63,939
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$10,453,299

Form 990s for Alpha-1 Foundation Alpha One Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-062024-03-25990View PDF
2022-062023-02-16990View PDF
2021-062022-03-04990View PDF
2020-062022-05-17990View PDF
2019-062021-03-19990View PDF
...and 7 more Form 990s

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Data update history
May 17, 2024
Updated personnel
Identified 2 new personnel
January 2, 2024
Received grants
Identified 2 new grant, including a grant for $4,624 from AmazonSmile Foundation
December 31, 2023
Received grants
Identified 1 new grant, including a grant for $2,000 from Grace Jones Richardson Testamentary Trust
October 14, 2023
Updated personnel
Identified 13 new personnel
July 22, 2023
Received grants
Identified 12 new grant, including a grant for $2,542,500 from AlphaNet Incorporated
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
HealthDiseases and disorders
Political advocacyOperates donor advised fundsConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelCommunity engagement / volunteeringProvides scholarshipsFundraising races, competitions, and tournamentsTax deductible donations
General information
3300 Ponce de Leon Blvd
Miami, FL 33134
Metro area
Miami-Fort Lauderdale-Pompano Beach, FL
Miami-Dade County, FL
Website URL
(305) 567-9888
Facebook page
Twitter profile
IRS details
Fiscal year end
Taxreturn type
Form 990
Year formed
Eligible to receive tax-deductible contributions (Pub 78)
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
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