Civic Intelligence

Alpha-1 Foundation Inc.

990 • Fiscal year 2022 • EIN 65-0585415

Jul 01, 2021 to Jun 30, 2022 • Filed on Feb 16, 2023

Organization Profilewww.alpha1.org
3300 Ponce de Leon BoulevardMiami, FL 33134-7211

(305) 567-9888

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

31st percentile

0.07x

Higher debt load relative to assets than 31% of similar nonprofits.

2022 filings • 501(c)3 • $25M-$50M nonprofits • Source year 2022

Liabilities / Revenue

46th percentile

0.24x

Higher debt load relative to revenue than 46% of similar nonprofits.

2022 filings • 501(c)3 • $25M-$50M nonprofits • Source year 2022

Net Margin

86th percentile

42%

Higher net margin than 86% of similar nonprofits.

2022 filings • 501(c)3 • $25M-$50M nonprofits • Source year 2022

Top Officer Pay

33rd percentile

$191,560

Higher top officer pay than 33% of similar nonprofits.

Top officer pay equals 1.8% of source-year revenue.

2022 filings • 501(c)3 • $25M-$50M nonprofits • Source year 2022

Asset Growth

57th percentile

2.6%

Faster asset growth than 57% of similar nonprofits.

2022 filings • 501(c)3 • $25M-$50M nonprofits • Annualized from 2021 to 2022

Revenue Growth

40th percentile

-0.5%

Faster revenue growth than 40% of similar nonprofits.

2022 filings • 501(c)3 • $25M-$50M nonprofits • Annualized from 2021 to 2022

Balance Sheet
Liabilities / Assets31st percentile

Assets

Up

$35,496,616

Up $893,130 (+2.6%) from 2021

Net Assets

Up

$32,872,896

Up $637,082 (+2.0%) from 2021

Liabilities

Up

$2,623,720

Up $256,048 (+11%) from 2021

Revenue And Expenses
Liabilities / Revenue46th percentileNet Margin86th percentile

Revenue

Down

$10,890,084

Down $52,355 (-0.5%) from 2021

Expenses

Up

$6,364,206

Up $108,103 (+1.7%) from 2021

Net Income

Down

$4,525,878

Down $160,458 (-3.4%) from 2021

Historical Trend

Balance Sheet Trend

Asset Growth57th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$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

2022

Assets$35,496,616
Liabilities$2,623,720
Net Assets$32,872,896
Open 2022 Filing

Operations Trend

Revenue Growth40th percentile

Revenue, expenses, and net income across loaded years, with this 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

2022

Revenue$10,890,084
Expenses$6,364,206
Net Income$4,525,878
Open 2022 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2021 to Jun 30, 2022
Signed
Feb 16, 2023
Return Version
2021v4.2
Gross Receipts
$17,207,677
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 Alpha1 Foundation is committed to finding a cure for Alpha1 Antitrypsin Deficiency and to improving the lives of Alphas worldwide

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$24,801,956$21,875,585▼ $2,926,371
Cash and Non-Interest-Bearing Accounts$4,319,457$7,943,740▲ $3,624,283
Savings and Temporary Cash Investments$4,294,626$4,433,622▲ $138,996
Accounts Receivable$982,721$675,118▼ $307,603
Investments Program Related$136,115$363,069▲ $226,954
Prepaid Expenses and Deferred Charges$21,728$167,500▲ $145,772
Land, Buildings, and Equipment, Net$21,749$12,982▼ $8,767
Total Assets$34,603,486$35,496,616▲ $893,130
Other Assets Total$25,134$25,000▼ $134
Liabilities
Accounts Payable and Accrued Expenses$1,937,857$1,889,700▼ $48,157
Deferred Revenue$416,000$715,000▲ $299,000
Other Liabilities$13,815$19,020▲ $5,205
Total Liabilities$2,367,672$2,623,720▲ $256,048
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$29,114,292$29,569,884▲ $455,592
Net Assets With Donor Restrictions$3,121,522$3,303,012▲ $181,490
Total Net Assets Fund Balance$32,235,814$32,872,896▲ $637,082
Total Liabilities and Net Assets / Fund Balance$34,603,486$35,496,616▲ $893,130

Asset Categories

AssetBook ValueDepreciationBasis
Investment Program Related Org$363,069--
Equipment$12,982$201,096-
Leasehold Improvements-$200,825-
Other Assets Org$25,000--
Compensation and Service Providers
Top Officer Pay33rd percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
MIRIAM A O'DAYPresident and CEOFT$187,865$3,695$191,560
Randel H PlantSen Director Research ProgsFT$129,239$11,915$141,154
Angela T McbrideSen Director Corp RelationsFT$115,193$15,483$130,676
Linda M RodriguezSenior Director DevelopmentFT$104,627$2,578$107,205
Scott T SantarellaPresident and CEOFT$76,853$491$77,344

Board Members and Trustees

NameTitle
Jon HagstromChair
JEANINE D'ARMIENTOImmediate Past Chair
Fred C WalshVice Chair
Catherine VernonDirector
Elizabeth JohnsonDirector
Faron SchonfeldDirector
James K StollerDirector
Noel G McelvaneyDirector
Peggy IversonDirector
Mark B DelvauxCFO
Ann KnebelSecretary
Kenneth IrvineTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
AlphaNet IncManagement services3300 Ponce de Leon Boulevard, Coral Gables, FL 33134$194,680
Original Impressions LLCPrinting and publicationPO Box 31792 Dept 18890, Tampa, FL 33631$115,769
Revenue and Support

Revenue Composition

Contributions and Grants
$9,050,130
Program Service Revenue
$366,000
Investment Income
$1,460,203
Other Revenue
$13,751
All Other Contributions
$9,050,130
Change in Net Assets
$4,525,878

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$207,500Fair Market Value (FMV)
Securities Publicly Traded3$8,894Fair Market Value (FMV)
Total Noncash Contributions4$216,394-

Audited Revenue Reconciliation

Revenue per Audited Statements
$10,787,909
Revenue Not Reported on Financial Statements
$102,175
Revenue Not Reported on Form 990
$-4,115,750
Other Revenue Adjustments
$-44,187
Total Revenue per Audited Statements
$6,672,159
Total Revenue per Form 990
$10,890,084
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$2,583,468
Other Expenses$2,088,226
Salaries, Compensation, and Employee Benefits$1,692,512
Total Fundraising Expense$584,227
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,723,851--$1,723,851
Other Salaries and Wages$1,010,855$83,978$275,061$1,369,894
Foreign Grants$806,117--$806,117
Office Expenses$298,119$29,772$91,402$419,293
Fees for Services Other$283,073$67,961$7,282$358,316
Fees for Services Management$120,000$100,000-$220,000
Occupancy$161,958$13,455$44,070$219,483
Other Employee Benefits$155,670$6,952$37,723$200,345
Conferences and Meetings$102,826$46,273$3,993$153,092
Fees for Service Investment Mgmnt Fees-$146,362-$146,362
Fees for Services Legal$89,736$25,428-$115,164
Payroll Taxes$75,616$6,772$21,096$103,484
Information Technology$51,797$20,152$7,300$79,249
Other Expenses$62,222$39,448$34,077$73,525
Fees for Services Accounting-$63,779-$63,779
Grants to Domestic Individuals$53,500--$53,500
Insurance$18,196$13,097$4,942$36,235
Travel$17,863$16,189$2,050$36,102
Pension Plan Contributions$13,510$1,833$3,446$18,789
Fees for Services Lobbying$10,000--$10,000
Depreciation Depletion$6,468$538$1,760$8,766
Total Functional Expenses$5,077,960$702,019$584,227$6,364,206

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Form 990$6,364,206
Total Expenses per Audited Statements$6,262,031
Expenses per Audited Statements$6,217,844
Expenses Not Reported on Financial Statements$146,362
Expenses Not Reported on Form 990$44,187
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of FloridaGainesville, FL501c3Research$441,615
Columbia UniversityNew York, NY501c3Research$300,000
National Jewish HealthDenver, CO501c3Research$124,873
Baylor College of MedicineHouston, TX501c3Research$100,000
Brigham & Women's HospitalBoston, MA501c3Research$100,000
Mayo ClinicRochester, MN501c3Research$100,000
University of KentuckyLexington, KY501c3Research$94,340
Saint Louis UniversitySaint Louis, MO501c3Research$81,996
Mass Inst of TechnologyCambridge, MA501c3Research$74,250
Clemson UniversityClemson, SC501c3Research$74,000
University of AlabamaBirmingham, AL501c3Research$74,000
Northwestern UniversityChicago, IL501c3Research$67,850
Nat Org Rare DisordersDanbury, CT501c3Patient support$25,000
University of N CarolinaChapel Hill, NC501c3Research$25,000
American Thoracic SocietyNew York, NY501c3Research$20,000
University of ColoradoDenver, CO501c3Research$15,628

International Summary

Employees
1
Spending
$41,027

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
EuropeProgram servicesEuropean public policy01$41,027
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$49,150
Fundraising Direct Expenses$44,187
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Tournament$49,150$49,150-$49,150
Total Events$49,150$49,150$44,187$4,963
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
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
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Part VI Line 11B

“The Form 990 is provided to members of management and the Board of”

Part VI Line 11B

“Directors for review prior to filing.”

Part VI Line 12C

“Written conflict of interest statements are obtained from all officers,”

Part VI Line 12C

“board members, and committee members on an annual basis.”

Part VI Line 15A or B

“Compensation levels are developed using salary surveys and a review of 990s”

Part VI Line 15A or B

“for comparable not-for-profit organizations.”

Part VI Line 18

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

Part VI Line 19

“Audited financial statements are available on www.alpha1.org. Governing”

Part VI Line 19

“documents and the conflict of interest policy are available upon request.”

Part VI, Line 17

“The Alpha-1 Foundation is registered to accept charitable donations in all”

Part VI, Line 17

“states that require it.”

Part VII, Line 1A

“The Chief Financial Officer is an employee of AlphaNet, Inc., an unrelated”

Part VII, Line 1A

“not-for-profit organization which provides its services through an”

Part VII, Line 1A

“administrative services agreement.”

Part VII, Line 5

“AlphaNet, Inc., another 501(c)(3) organization, provides the services of”

Part VII, Line 5

“the Chief Financial Officer under an administrative services agreement in”

Part VII, Line 5

“the amount of $100,000. The amount is based on the reasonable estimate of”

Part VII, Line 5

“the value of the services provided to the Alpha-1 Foundation.”

Filing and Contact Details

Filer

Filer Name
Alpha-1 Foundation
EIN
65-0585415
In Care Of
% Mark M Delvaux
Phone
3055679888
Address
3300 Ponce de Leon Boulevard, Miami, FL 33134-7211
Doing Business As
Alpha One Foundation

Signing Officer

Name
Mark M Delvaux
Title
CFO
Phone
3055679888
Signed
2023-02-16
Discuss with paid preparer
No

Organization Details

Principal Officer
Mark B Delvaux
Formed
1995
Legal Domicile
Fl
Voting Board Members
11
Independent Board Members
11
Employees
20
Volunteers
300

Preparer

Preparer
Patrick M Lunn
Phone
3054421776
Supplemental Narrative

Additional Explanations

Part III Line 2

“The Foundation launched a therapeutic development network, classified”

Part III Line 2

“under the Alpha-1 Research Network.”

Part XI Line 9

“This amount refers to an audit adjustment made to reflect the value of”

Part XI Line 9

“Alpha-1 Foundation's wholly owned subsidiary, The Alpha-1 Project.”

Part III Line 4D

“Expenses: $160882.00 including grants of: $0.00 Revenue: $130000.00”

Part III Line 4D

“The mission of Alpha-1 Global is to develop a collaborative global network”

Part III

“of Alpha-1 patient leaders, physicians, and researchers.”

Part III Line 4D

“Expenses: $268797.00 including grants of: $0.00 Revenue: $230000.00”

Part III Line 4D

“The Foundation's Public Policy program monitors relevant legislation and”

Part III Line 4D

“regulatory issues and publicizes the Foundation's positions on such issues.”

Part III Line 4D

“Expenses: $227140.00 including grants of: $0.00 Revenue: $366000.00”

Part III Line 4D

“The Alpha-1-To-One Magazine is designed to inform the community of research”

Part III Line 4D

“developments, education, advocacy and fund raising opportunities.”

Part III Line 4D

“Expenses: $164608.00 including grants of: $0.00 Revenue: $390000.00”

Part III Line 4D

“Alpha-1 Education Days provide access to current medical information and”

Part III Line 4D

“resources to hundreds of Alphas, their families, and caregivers.”

Part III Line 4D

“Expenses: $561694.00 including grants of: $78500.00 Revenue: $333500.00”

Part III Line 4D

“Other Alpha-1 services include patient education (materials, website, etc),”

Part III Line 4D

“a Patient Support Network, and a targeted detection program.”

Financial Statement Notes

P10, Ln 2

“The Foundation has adopted the provisions of ASC No. 740 "Income Taxes."”

P10, Ln 2

“Under ASC 740, the Foundation must recognize the tax liability (or benefit)”

P10, Ln 2

“associated with tax positions taken for tax return purposes when it is”

P10, Ln 2

“more-likely-than-not that the position will be sustained. The adoption of”

P10, Ln 2

“ASC 740 had no impact on the Foundation's consolidated financial”

P10, Ln 2

“statements. Management of the Foundation does not believe there are any”

P10, Ln 2

“material uncertain tax positions and accordingly has not recorded any”

P10, Ln 2

“liability for unrecognized tax benefits.”

P11, Ln 4B

“This amount reflects special event expenses that are reported at gross in”

P11, Ln 4B

“the audited financial statements, rather than netted against special event”

P11, Ln 4B

“revenues as is the case on the Form 990.”

P12, Ln 2D

“This amount reflects special event expenses that are reported at gross in”

P12, Ln 2D

“the audited financial statements, rather than netted against special event”

P12, Ln 2D

“revenues as is the case on the Form 990.”

P11, Ln 2D

“This amount is an adjustment for rounding.”

Raw XML AppendixShowing 400 of 1,175 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/Form990PartVIISectionAGrp/TitleTxt0President and CEO
IRS990/Form990PartVIISectionAGrp/TitleTxt1Sen Dir Research Progs
IRS990/Form990PartVIISectionAGrp/TitleTxt2Sen Dir Corp Relations
IRS990/Form990PartVIISectionAGrp/TitleTxt3President and CEO
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IRS990/ProgSrvcAccomActy2Grp/Desc0Alpha-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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Alpha-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.
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0The mission of Alpha-1 Global is to develop a collaborative global network of Alpha-1 patient leaders, physicians, and researchers.
IRS990/ProgSrvcAccomActyOtherGrp/Desc1The Foundation's Public Policy program monitors relevant legislation and regulatory issues and publicizes the Foundation's positions on such issues.
IRS990/ProgSrvcAccomActyOtherGrp/Desc2The Alpha-1-To-One Magazine is designed to inform the community of research developments, education, advocacy and fund raising opportunities.
IRS990/ProgSrvcAccomActyOtherGrp/Desc3Alpha-1 Education Days provide access to current medical information and resources to hundreds of Alphas, their families, and caregivers.
IRS990/ProgSrvcAccomActyOtherGrp/Desc4Other Alpha-1 services include patient education (materials, website, etc), a Patient Support Network, and a targeted detection program.
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IRS990/ProgSrvcAccomActyOtherGrp/RevenueAmt0130000

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Filings

Displayed year

2022 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$35,496,616
Liabilities
$2,623,720
Net assets
$32,872,896
Revenue
$10,890,084
Expenses
$6,364,206
Net income
$4,525,878
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