Civic Intelligence

Alpha-1 Foundation

EIN 65-0585415 • 501(c)3 • Miami, FL

Profile

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.

3300 Ponce de Leon BlvdMiami, FL 33134-7211

alpha1.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

28th percentile

0.06x

Higher debt load relative to assets than 28% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Source year 2023

Liabilities / Revenue

42nd percentile

0.21x

Higher debt load relative to revenue than 42% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Source year 2023

Net Margin

74th percentile

18%

Higher net margin than 74% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Source year 2023

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

52nd percentile

6.1%

Faster asset growth than 52% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Annualized from 2022 to 2023

Revenue Growth

25th percentile

-4.0%

Faster revenue growth than 25% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Annualized from 2022 to 2023

Assets

Up

$44,464,081

Up $6,801,427 (+18%) from 2023

Liabilities

Up

$2,581,193

Up $424,005 (+20%) from 2023

Net Assets

Up

$41,882,888

Up $6,377,422 (+18%) from 2023

Revenue

Up

$11,614,380

Up $1,161,081 (+11%) from 2023

Expenses

Up

$10,093,036

Up $1,545,093 (+18%) from 2023

Net Income

Down

$1,521,344

Down $384,012 (-20%) from 2023

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$60M$40M$20M$0Assets 2011: $12,033,241Liabilities 2011: $960,735Net Assets 2011: $11,072,5062011Assets 2012: $15,174,094Liabilities 2012: $779,250Net Assets 2012: $14,394,8442012Assets 2013: $17,791,435Liabilities 2013: $658,995Net Assets 2013: $17,132,4402013Assets 2014: $21,727,554Liabilities 2014: $1,057,052Net Assets 2014: $20,670,5022014Assets 2015: $24,158,161Liabilities 2015: $1,384,846Net Assets 2015: $22,773,3152015Assets 2016: $24,555,213Liabilities 2016: $1,651,604Net Assets 2016: $22,903,6092016Assets 2017: $25,865,882Liabilities 2017: $1,744,037Net Assets 2017: $24,121,8452017Assets 2018: $27,681,923Liabilities 2018: $2,078,124Net Assets 2018: $25,603,7992018Assets 2019: $30,710,295Liabilities 2019: $2,551,250Net Assets 2019: $28,159,0452019Assets 2020: $27,046,714Liabilities 2020: $2,173,143Net Assets 2020: $24,873,5712020Assets 2021: $34,603,486Liabilities 2021: $2,367,672Net Assets 2021: $32,235,8142021Assets 2022: $35,496,616Liabilities 2022: $2,623,720Net Assets 2022: $32,872,8962022Assets 2023: $37,662,654Liabilities 2023: $2,157,188Net Assets 2023: $35,505,4662023Assets 2024: $44,464,081Liabilities 2024: $2,581,193Net Assets 2024: $41,882,8882024

Highlighted filing

2024

Assets$44,464,081
Liabilities$2,581,193
Net Assets$41,882,888

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$15M$10M$5.0M$0Revenue 2011: $7,745,763Expenses 2011: $4,996,481Net Income 2011: $2,749,2822011Revenue 2012: $7,985,052Expenses 2012: $4,662,714Net Income 2012: $3,322,3382012Revenue 2013: $7,238,423Expenses 2013: $5,367,939Net Income 2013: $1,870,4842013Revenue 2014: $7,725,147Expenses 2014: $5,930,306Net Income 2014: $1,794,8412014Revenue 2015: $11,045,733Expenses 2015: $8,472,951Net Income 2015: $2,572,7822015Revenue 2016: $9,997,921Expenses 2016: $9,502,067Net Income 2016: $495,8542016Revenue 2017: $10,833,144Expenses 2017: $9,757,837Net Income 2017: $1,075,3072017Revenue 2018: $10,631,929Expenses 2018: $9,202,987Net Income 2018: $1,428,9422018Revenue 2019: $10,626,839Expenses 2019: $9,439,199Net Income 2019: $1,187,6402019Revenue 2020: $11,171,403Expenses 2020: $7,410,910Net Income 2020: $3,760,4932020Revenue 2021: $10,942,439Expenses 2021: $6,256,103Net Income 2021: $4,686,3362021Revenue 2022: $10,890,084Expenses 2022: $6,364,206Net Income 2022: $4,525,8782022Revenue 2023: $10,453,299Expenses 2023: $8,547,943Net Income 2023: $1,905,3562023Revenue 2024: $11,614,380Expenses 2024: $10,093,036Net Income 2024: $1,521,3442024

Highlighted filing

2024

Revenue$11,614,380
Expenses$10,093,036
Net Income$1,521,344

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$44.5$2.58$41.9$11.6$10.1$1.52
2023Detailed filing. Detailed filing data is available for this year.$37.7$2.16$35.5$10.5$8.55$1.91
2022Detailed filing. Detailed filing data is available for this year.$35.5$2.62$32.9$10.9$6.36$4.53
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$34.6$2.37$32.2$10.9$6.26$4.69
2020Summary only. Only limited summary data is available for this year.$27.0$2.17$24.9$11.2$7.41$3.76
2019Summary only. Only limited summary data is available for this year.$30.7$2.55$28.2$10.6$9.44$1.19
2018Summary only. Only limited summary data is available for this year.$27.7$2.08$25.6$10.6$9.20$1.43
2017Summary only. Only limited summary data is available for this year.$25.9$1.74$24.1$10.8$9.76$1.08
2016Summary only. Only limited summary data is available for this year.$24.6$1.65$22.9$10.00$9.50$0.50
2015Summary only. Only limited summary data is available for this year.$24.2$1.38$22.8$11.0$8.47$2.57
2014Summary only. Only limited summary data is available for this year.$21.7$1.06$20.7$7.73$5.93$1.79
2013Summary only. Only limited summary data is available for this year.$17.8$0.66$17.1$7.24$5.37$1.87
2012Summary only. Only limited summary data is available for this year.$15.2$0.78$14.4$7.99$4.66$3.32
2011Summary only. Only limited summary data is available for this year.$12.0$0.96$11.1$7.75$5.00$2.75
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jul 1, 2023 to Jun 30, 2024
Signed
May 15, 2025
Return Version
2023v6.0
Gross Receipts
$32,410,581
Mission and Program Overview

Mission

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.

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of Alphas worldwide.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$34,601,529$39,774,063▲ $5,172,534
Investments Program Related$281,138$1,490,917▲ $1,209,779
Savings and Temporary Cash Investments$508,112$1,052,795▲ $544,683
Cash and Non-Interest-Bearing Accounts$1,200,391$992,958▼ $207,433
Accounts Receivable$949,746$921,723▼ $28,023
Prepaid Expenses and Deferred Charges$86,986$195,920▲ $108,934
Land, Buildings, and Equipment, Net$9,752$10,705▲ $953
Other Notes and Loans Receivable, Net$0$0→ $0
Pledges and Grants Receivable$0--
Receivable From Disqualified Prsn$0$0→ $0
Receivables From Officers Etc$0$0→ $0
Investments Other Securities$0$0→ $0
Intangible Assets$0$0→ $0
Inventories for Sale or Use$0$0→ $0
Loans From Officers Directors$0--
Total Assets$37,662,654$44,464,081▲ $6,801,427
Other Assets Total$25,000$25,000→ $0
Liabilities
Accounts Payable and Accrued Expenses$705,296$1,000,326▲ $295,030
Grants Payable$890,392$941,034▲ $50,642
Deferred Revenue$561,500$639,833▲ $78,333
Mortgage Notes Payable Secured by Investment Property$0--
Unsecured Notes Loans Payable$0--
Other Liabilities$0$0→ $0
Escrow Account Liability$0--
Tax Exempt Bond Liabilities$0--
Total Liabilities$2,157,188$2,581,193▲ $424,005
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$33,095,472$39,896,406▲ $6,800,934
Net Assets With Donor Restrictions$2,409,994$1,986,482▼ $423,512
Total Net Assets Fund Balance$35,505,466$41,882,888▲ $6,377,422
Total Liabilities and Net Assets / Fund Balance$37,662,654$44,464,081▲ $6,801,427

Asset Categories

AssetBook ValueDepreciationBasis
Buildings$0$0$0
Other Land Buildings$0$0$0
Land$0-$0
Equipment$10,705$212,543$0
Leasehold Improvements$0$200,825$0
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Scott SantarellaPresident and CEOFT$330,774$25,323$356,097
Randel H PlantSen Director Research ProgsFT$143,033$12,642$155,675
Angela T McBrideSen Director Corp RelationsFT$127,368$18,601$145,969
Linda RodriguezDevelopment DirectorFT$122,295$6,436$128,731
Jeanne KushnerSr Director of CommunicationsFT$100,532$27,513$128,045

Board Members and Trustees

NameTitle
Jon HagstromChair
Fred C WalshVice Chair
Ann KnebelDirector
Catherine VernonDirector
Darrell KottonDirector
Faron SchonfeldDirector
Jennifer JoppDirector
Mark BrantlyDirector
Noel G McElvaneyDirector
Virginia ClarkPhysician Director
Mark B DelvauxCFO
Peggy IversonSecretary
Kenneth IrvineTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
AlphaNet IncManagement services3300 Ponce de Leon Blvd, Coral Gables, FL 33134$282,761
Moses & Singer LLPLegal Services405 Lexington Ave, New York, NY 10174$262,489
Sight & Sound Productions LLCVideo Production3636 Beachwood Ct, Jacksonville, FL 32224$203,385
Speaking of ScienceWebsite design6916 Prince Georges Ave, Takoma Park, MD 20912$175,085
Original Impressions LLCPrinting and publishingPO Box 31792, Tampa, FL 33631$120,540
Revenue and Support

Revenue Composition

Contributions and Grants
$8,897,971
Program Service Revenue
$373,667
Investment Income
$2,181,265
Other Revenue
$161,477
All Other Contributions
$8,897,971
Change in Net Assets
$1,521,344

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Other Non Cash Contri Table1$222,500Fair Market Value (FMV)
Securities Publicly Traded1$25,310Fair Market Value (FMV)
Total Noncash Contributions2$247,810-

Audited Revenue Reconciliation

Revenue per Audited Statements
$11,645,041
Revenue Not Reported on Financial Statements
$-30,661
Revenue Not Reported on Form 990
$3,794,857
Other Revenue Adjustments
$-179,219
Total Revenue per Audited Statements
$15,439,898
Total Revenue per Form 990
$11,614,380
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$4,616,956
Grants and Similar Amounts Paid$3,230,157
Salaries, Compensation, and Employee Benefits$2,245,923
Total Fundraising Expense$991,401
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$2,226,492--$2,226,492
Other Salaries and Wages$1,444,939$35,982$344,939$1,825,860
Conferences and Meetings$1,090,509$96,803$266,491$1,453,803
Foreign Grants$953,665--$953,665
Fees for Services Other$780,321$63,766$16,178$860,265
Office Expenses$305,704$39,820$123,330$468,854
Information Technology$458,838$981$6,343$466,162
Fees for Services Legal$381,611$24,268$2,892$408,771
Travel$256,875$49,682$26,190$332,747
Other Employee Benefits$214,324$2,637$28,909$245,870
Fees for Services Management$0$162,500$0$162,500
Payroll Taxes$100,840$2,539$24,195$127,574
Fees for Services Accounting$0$89,845$0$89,845
Other Expenses$0$23,743$39,913$63,656
Fees for Services Lobbying$61,500$0$0$61,500
Grants to Domestic Individuals$50,000--$50,000
Occupancy$0$6,900$42,879$49,779
Pension Plan Contributions$35,401$1,416$9,802$46,619
Insurance$23,710$3,576$5,673$32,959
All Other Expenses$6,239$240$1,493$7,972
Depreciation Depletion$4,133$159$989$5,281
Total Functional Expenses$8,468,966$632,669$991,401$10,093,036

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$10,272,255
Expenses per Audited Statements$10,093,036
Total Expenses per Form 990$10,093,036
Expenses Not Reported on Form 990$179,219
Expenses Not Reported on Financial Statements$0
Other Expense Adjustments$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of FloridaGainesville, FL501 (c) (3)Research$523,817
Brigham & Women's HospitalBoston, MA501 (c) (3)Research$397,375
Columbia UniversityNew York, NY501 (c) (3)-$234,375
Regents of the University of California Los AngelesLos Angeles, CA501 (c) (3)-$233,749
Boston UniversityBoston, MA501 (c) (3)-$185,618
University of AlabamaBirmingham, AL501 (c) (3)-$124,500
Baylor College of MedicineHouston, TX501 (c) (3)-$124,350
Boston Medical CenterBoston, MA501 (c) (3)-$99,500
Clemson UniversityClemson, SC501 (c) (3)-$99,452
University of ColoradoDenver, CO501 (c) (3)-$70,000
University of ChicagoChicago, IL501 (c) (3)-$62,148
National Jewish HealthDenver, CO501 (c) (3)-$40,000
NordWoburn, MA501 (c) (3)-$30,000
University of Kansas Medical CenterKansas City, KS501 (c) (3)-$16,004

International Summary

Offices
0
Employees
1
Spending
$35,093

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (including Iceland and Greenland)Program ServicesEuropean public policy01$35,093
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$334,116
Fundraising Direct Expenses$179,219
Gaming Direct Expenses$0
Gaming Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Building Friends for a Cure$535,152$334,116$135,004$199,112
Total Events$535,152$334,116$179,219$154,897
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Loans from Officers, Directors, Trustees, and Key Employees$0--
Receivables from Disqualified Persons$0$0→ $0
Receivables from Officers, Directors, Trustees, and Key Employees$0$0→ $0
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
Yes
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

The Form 990 is provided to members of management and the Board of Directors for review prior to filing.

Form 990, Part VI, Section B, Line 12C

Written conflict of interest statements are obtained from all officers, board members, and committee members on an annual basis.

Form 990, Part VI, Section B, Line 15

Compensation levels are developed using salary surveys and a review of 990s for comparable not-for-profit organizations.

Form 990, Part VI, Section C, Line 17

The Alpha-1 Foundation is registered to accept charitable donations in all states that require it.

Form 990, Part VI, Section C, Line 18

Form 990 is available on www.alpha1.org, and also upon request.

Form 990, Part VI, Section C, Line 19

Audited financial statements are available on www.alpha1.org. Governing documents and the conflict of interest policy are available upon request.

Form 990, Part VII, Section A, Line 1A

The Chief Financial Officer is an employee of AlphaNet, Inc., an unrelated not-for-profit organization which provides its services through an administrative services agreement.

Form 990, Part VII, Section A, Line 5

AlphaNet, Inc., another 501 (c) (3) organization, provides the services of the Chief Financial Officer under an administrative services agreement in the amount of $100,000. the amount is based on the reasonable estimate of the value of the services provided to the Alpha-1 Foundation.

Filing and Contact Details

Filer

Filer Name
Alpha-1 Foundation Inc
EIN
65-0585415
Phone
3055679888
Address
3300 Ponce de Leon Blvd, Miami, FL 33134-7211

Signing Officer

Name
Mark Delvaux
Title
CFO
Phone
3056489540
Signed
2025-05-15

Organization Details

Principal Officer
Scott Santarella
Formed
1995
Legal Domicile
Fl
Voting Board Members
13
Independent Board Members
13
Employees
19
Volunteers
300
Supplemental Narrative

Additional Explanations

Form 990, Part XI, Line 9

This amount refers to an audit adjustment made to reflect the value of Alpha-1 Foundation's wholly owned subsidiary, The Alpha-1 Project.

Financial Statement Notes

Schedule D, Part X, Line 2

The Foundation has adopted the provisions of ASC No. 740 "Income Taxes." Under ASC 740, the Foundation must recognize the tax liability (or benefit) associated with tax positions taken for tax return purposes when it is more-likely-than-not that the position will be sustained. The adoption of ASC 740 had no impact on the Foundation's consolidated financial statements. management of the Foundation does not believe there are any material uncertain tax positions and accordingly has not recorded any liability for unrecognized tax benefits.

Schedule D, Part XI, Line 4B

This amount reflects special event expenses that are reported at gross in the audited financial statements, rather than netted against special event revenues as is the case on the Form 990.

Schedule D, Part XII, Line 2D

This amount reflects special event expenses that are reported at gross in the audited financial statements, rather than netted against special event revenues as is the case on the Form 990.

Raw XML AppendixShowing 400 of 1,126 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Desc0Alpha-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.
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IRS990/Form990PartVIISectionAGrp/TitleTxt0President and CEO
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IRS990/MissionDesc0The 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.
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