EIN 65-0585415

Alpha-1 Foundation Alpha One Foundation

IRS 501(c) type
501(c)(3)
Num. employees
20
City
State
Year formed
1995
Most recent tax filings
2022-06-01
Description
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
$10,890,084
2022
Total expenses
$6,364,206
2022
Total assets
$35,496,616
2022
Num. employees
20
2022

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 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.
Alpha-1 National Conference: The 31st annual Alpha-1 National Educational Conference was a hybrid conference held on June 8-11, 2022. 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 Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues.
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.
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$441,615
Columbia UniversityResearch$300,000
National Jewish HealthResearch$124,873
...and 12 more grants made

Who funds Alpha-1 Foundation Alpha One Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
AlphaNet IncorporatedUnrestricted$2,542,500
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$134,100
Columbus FoundationHealth$103,956
...and 30 more grants received totalling $2,884,100

Personnel at Alpha-1 Foundation Alpha One Foundation

NameTitleCompensation
Scott SantarellaPresident and Chief Executive Officer$76,853
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 23 more key personnel

Financials for Alpha-1 Foundation Alpha One Foundation

RevenuesFYE 06/2022
Total grants, contributions, etc.$9,050,130
Program services$366,000
Investment income and dividends$465,635
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$8,788
Net gain from sale of non-inventory assets$994,568
Net income from fundraising events$4,963
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$10,890,084

Form 990s for Alpha-1 Foundation Alpha One Foundation

Fiscal year endingDate received by IRSFormPDF link
2022-062023-02-16990View PDF
2021-062022-03-04990View PDF
2020-062022-05-17990View PDF
2019-062021-03-19990View PDF
2018-062019-03-19990View PDF
...and 6 more Form 990s

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Lupus Foundation of AmericaWashington, DC$17,263,965
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United Mitochondrial Disease Foundation (UMDF)Pittsburgh, PA$3,572,403
Epilepsy FoundationBowie, MD$21,897,167
Nephcure Kidney International (NKI)King of Prussia, PA$4,495,178
Autism SpeaksPrinceton, NJ$46,771,653
National Down Syndrome Society (NDSS)Washington, DC$3,651,955
Cure Sma (CSMA)Elk Grove Village, IL$15,022,219
Data update history
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
June 19, 2023
Posted financials
Added Form 990 for fiscal year 2022
June 17, 2023
Updated personnel
Identified 2 new personnel
June 9, 2023
Updated personnel
Identified 11 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyOperates donor advised fundsProvides grantsConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelCommunity engagement / volunteeringProvides scholarshipsFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
3300 Ponce de Leon Blvd
Miami, FL 33134
Metro area
Miami-Fort Lauderdale-Pompano Beach, FL
County
Miami-Dade County, FL
Website URL
alpha1.org/ 
Phone
(305) 567-9888
Facebook page
Alpha1Foundation 
Twitter profile
@alphafriend 
IRS details
EIN
65-0585415
Fiscal year end
June
Taxreturn type
Form 990
Year formed
1995
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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