Civic Intelligence

The Barth Syndrome Foundation

EIN 22-3755704 • 501(c)3 • Larchmont, NY

Profile

The barth syndrome foundation is an engaged, global community whose mission is saving lives through education, advances in treatments, and finding a cure for barth syndrome.

2005 Palmer Avenue 1033Larchmont, NY 10538

www.barthsyndrome.org

Siviq Scores

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

Liabilities / Assets

90th percentile

0.07x

Higher debt load relative to assets than 90% of similar nonprofits.

NTEE T • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

90th percentile

0.22x

Higher debt load relative to revenue than 90% of similar nonprofits.

NTEE T • $5M-$10M nonprofits • Source year 2024

Net Margin

33rd percentile

-7.9%

Higher net margin than 33% of similar nonprofits.

NTEE T • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

96th percentile

$248,133

Higher top officer pay than 96% of similar nonprofits.

Top officer pay equals 12.8% of source-year revenue.

NTEE T • $5M-$10M nonprofits • Source year 2024

Asset Growth

52nd percentile

2.7%

Faster asset growth than 52% of similar nonprofits.

NTEE T • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

59th percentile

45%

Faster revenue growth than 59% of similar nonprofits.

NTEE T • $5M-$10M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets90th percentile

Assets

Up

$5,640,640

Up $149,310 (+2.7%) from 2023

Liabilities

Up

$420,354

Up $214,378 (+104%) from 2023

Net Assets

Down

$5,220,286

Down $65,068 (-1.2%) from 2023

Operations
Liabilities / Revenue90th percentileNet Margin33rd percentile

Revenue

Up

$1,940,887

Up $606,081 (+45%) from 2023

Expenses

Up

$2,093,891

Up $672,174 (+47%) from 2023

Net Income

Down

-$153,004

Down $66,093 (-76%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth52nd percentile

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

$6.0M$4.0M$2.0M$0Assets 2010: $2,032,501Liabilities 2010: $100,042Net Assets 2010: $1,932,4592010Assets 2011: $1,994,513Liabilities 2011: $99,302Net Assets 2011: $1,895,2112011Assets 2012: $1,909,785Liabilities 2012: $90,438Net Assets 2012: $1,819,3472012Assets 2013: $1,908,550Liabilities 2013: $62,293Net Assets 2013: $1,846,2572013Assets 2014: $1,874,325Liabilities 2014: $116,317Net Assets 2014: $1,758,0082014Assets 2015: $3,913,906Liabilities 2015: $240,827Net Assets 2015: $3,673,0792015Assets 2016: $3,793,936Liabilities 2016: $216,379Net Assets 2016: $3,577,5572016Assets 2017: $3,971,455Liabilities 2017: $258,784Net Assets 2017: $3,712,6712017Assets 2018: $4,750,350Liabilities 2018: $159,079Net Assets 2018: $4,591,2712018Assets 2019: $4,993,243Liabilities 2019: $286,825Net Assets 2019: $4,706,4182019Assets 2020: $5,553,199Liabilities 2020: $272,560Net Assets 2020: $5,280,6392020Assets 2021: $5,986,941Liabilities 2021: $285,252Net Assets 2021: $5,701,6892021Assets 2022: $5,372,000Liabilities 2022: $358,670Net Assets 2022: $5,013,3302022Assets 2023: $5,491,330Liabilities 2023: $205,976Net Assets 2023: $5,285,3542023Assets 2024: $5,640,640Liabilities 2024: $420,354Net Assets 2024: $5,220,2862024

Highlighted filing

2024

Assets$5,640,640
Liabilities$420,354
Net Assets$5,220,286
Open 2024 Filing

Operations Trend

Revenue Growth59th percentile

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

$4.0M$3.0M$2.0M$1.0M$0-$1.0MExpenses 2010: $1,066,9922010Expenses 2011: $752,6662011Expenses 2012: $956,3092012Revenue 2013: $824,655Expenses 2013: $796,952Net Income 2013: $27,7032013Revenue 2014: $1,107,097Expenses 2014: $1,195,629Net Income 2014: -$88,5322014Revenue 2015: $3,165,453Expenses 2015: $1,232,310Net Income 2015: $1,933,1432015Revenue 2016: $1,082,407Expenses 2016: $1,231,511Net Income 2016: -$149,1042016Revenue 2017: $963,264Expenses 2017: $930,832Net Income 2017: $32,4322017Revenue 2018: $2,291,095Expenses 2018: $1,155,310Net Income 2018: $1,135,7852018Revenue 2019: $1,135,762Expenses 2019: $1,301,376Net Income 2019: -$165,6142019Revenue 2020: $1,267,165Expenses 2020: $1,001,933Net Income 2020: $265,2322020Revenue 2021: $1,563,641Expenses 2021: $1,010,732Net Income 2021: $552,9092021Revenue 2022: $1,387,712Expenses 2022: $1,367,327Net Income 2022: $20,3852022Revenue 2023: $1,334,806Expenses 2023: $1,421,717Net Income 2023: -$86,9112023Revenue 2024: $1,940,887Expenses 2024: $2,093,891Net Income 2024: -$153,0042024

Highlighted filing

2024

Revenue$1,940,887
Expenses$2,093,891
Net Income-$153,004
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$5,640,640
Liabilities
$420,354
Net assets
$5,220,286
Revenue
$1,940,887
Expenses
$2,093,891
Net income
-$153,004
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$5.64$0.42$5.22$1.94$2.09$0.15
2023Detailed filing. Detailed filing data is available for this year.$5.49$0.21$5.29$1.33$1.42$0.09
2022Detailed filing. Detailed filing data is available for this year.$5.37$0.36$5.01$1.39$1.37$0.02
2021Detailed filing. Detailed filing data is available for this year.$5.99$0.29$5.70$1.56$1.01$0.55
2020Detailed filing. Detailed filing data is available for this year.$5.55$0.27$5.28$1.27$1.00$0.27
2019Detailed filing. Detailed filing data is available for this year.$4.99$0.29$4.71$1.14$1.30$0.17
2018Detailed filing. Detailed filing data is available for this year.$4.75$0.16$4.59$2.29$1.16$1.14
2017Detailed filing. Detailed filing data is available for this year.$3.97$0.26$3.71$0.96$0.93$0.03
2016Detailed filing. Detailed filing data is available for this year.$3.79$0.22$3.58$1.08$1.23$0.15
2015Detailed filing. Detailed filing data is available for this year.$3.91$0.24$3.67$3.17$1.23$1.93
2014Detailed filing. Detailed filing data is available for this year.$1.87$0.12$1.76$1.11$1.20$0.09
2013Detailed filing. Detailed filing data is available for this year.$1.91$0.06$1.85$0.82$0.80$0.03
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.91$0.09$1.82$0.96
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.99$0.10$1.90$0.75
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.03$0.10$1.93$1.07
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jul 2, 2025
Return Version
2024v5.2
Gross Receipts
$2,800,620
Mission and Program Overview

Mission

The barth syndrome foundation is an engaged, global community whose mission is saving lives through education, advances in treatment, and finding a cure for barth syndrome.

1)to promote awareness of barth syndrome; 2) to educate and support physicians, research centers, and organizations addressing the causes, diagnosis, treatments and cure of barth syndrome; and 3) to assist in the support of those suffering from barth syndrome and their families.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$4,957,899$4,860,260▼ $97,639
Cash and Non-Interest-Bearing Accounts$460,296$720,374▲ $260,078
Prepaid Expenses and Deferred Charges$48,135$34,906▼ $13,229
Investments Program Related$25,000$25,000→ $0
Pledges and Grants Receivable-$100-
Total Assets$5,491,330$5,640,640▲ $149,310
Liabilities
Grants Payable$84,650$256,910▲ $172,260
Accounts Payable and Accrued Expenses$94,143$163,444▲ $69,301
Deferred Revenue$27,183--
Total Liabilities$205,976$420,354▲ $214,378
Net Assets / Fund Balance
Net Assets With Donor Restrictions$3,963,173$4,098,919▲ $135,746
Net Assets Without Donor Restrictions$1,322,181$1,121,367▼ $200,814
Total Net Assets Fund Balance$5,285,354$5,220,286▼ $65,068
Total Liabilities and Net Assets / Fund Balance$5,491,330$5,640,640▲ $149,310
Compensation and Service Providers
Top Officer Pay96th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Emily MilliganExecutive DirectorFT$197,314$50,819$248,133
Lindsay MarjoramDirector of ResearchFT$174,980$7,216$182,196

Board Members and Trustees

NameTitle
Katherine MccurdyChair
James BaffaVice Chair
Andrew Buddemeyer Term 24Board Member
Bruce DevelleBoard Member
Florence Mannes Term 24Board Member
Jonathan StokesBoard Member
Megan BranaghBoard Member
Michelle FlorezBoard Member
Miriam GreenbergBoard Member
Nina RussellBoard Member
Peter Van LooBoard Member
Brandi DagueSecretary
Mark GreeneTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,674,742
Program Service Revenue
$0
Investment Income
$256,783
Other Revenue
$9,362
All Other Contributions
$1,674,742
Change in Net Assets
$-153,004

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,912,164
Revenue Not Reported on Financial Statements
$28,723
Revenue Not Reported on Form 990
$161,596
Total Revenue per Audited Statements
$2,073,760
Total Revenue per Form 990
$1,940,887
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$840,854
Other Expenses$820,291
Grants and Similar Amounts Paid$432,746
Total Fundraising Expense$178,686
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$418,143$20,959$71,179$510,281
Fees for Services Other$227,540$16,632$5,200$249,372
Current Officers, Directors, Trustees, and Key Employees$161,287$24,813$62,034$248,134
Travel$243,205--$243,205
Grants to Domestic Orgs$235,746--$235,746
Foreign Grants$185,000--$185,000
Office Expenses$60,221$39,466$22,484$122,171
Fees for Services Accounting-$62,820-$62,820
Payroll Taxes$40,384$1,854$7,582$49,820
Other Employee Benefits$24,897$1,818$5,904$32,619
Fees for Services Legal$12,503--$12,503
Grants to Domestic Individuals$12,000--$12,000
Other Expenses$4,868$6,868$38$11,736
Insurance-$7,724-$7,724
All Other Expenses$506$954-$1,460
Total Functional Expenses$1,731,297$183,908$178,686$2,093,891

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,138,828
Expenses per Audited Statements$2,093,891
Total Expenses per Form 990$2,093,891
Expenses Not Reported on Form 990$44,937
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Duke UniversityDurham, NC501(c)(3)Cardiac and Skeletal Muscle Myofilament Activators for the Treatment of Barth Syndrome$99,519
New York UniversityNew York, NY501(c)(3)Mechanism of Cardiolipin Remodeling by Tafazzin$75,000
Uc BoulderBoulder, CO501(c)(3)Investigating the Molecular Basis for the Impaired Mitochondrial Dynamics in Barth Syndrome$40,000
New York UniversityNew York, NY501(c)(3)Arrhythmia Project$21,227

International Summary

Offices
0
Employees
0
Spending
$185,000

International Compliance

Foreign grant records maintained
No
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
EuropeGrants to Recipients Located in RegionResearch Grants00$185,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
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
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
No
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

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

“The form 990 is sent to the full board of directors via email prior to being filed with irs. All directors are afforded the opportunity to ask questions and offer edits. The decision of whether to make edits is made by the staff person in charge of finances within the organization in conjunction with consultation with our tax preparer.”

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

“Each board member and all employees who can influence the actions of barth syndrome foundation (bsf) must fill out an annual declaration stating that they had no conflicts or identifying the nature of their interested party transactions. It is the responsability of the board, officers, and management employees to scrutinize their transactions and outside business interests and relationships for potential conflicts and to immediately make such disclosures. The board shall determine whether a conflict exists and in the case of an existing conflict, whether the contemplated transaction may be authorized as just, fair, and reasonable to bsf.”

Form 990, Part VI, Section B, Line 15

“The executive committee reviews compensation from comparable organizations and from recognized studies every few years or earlier if deemed prudent and review the performance of the executive director and the key employees to determine if the existing salaries fall within these ranges.”

Form 990, Part VI, Section C, Line 19

“The foundation makes its governing documents, conflict of interest and other policies, and financial statements available to the public on its website and/or by request.”

Filing and Contact Details

Filer

Filer Name
The Barth Syndrome Foundation
EIN
22-3755704
Phone
9143036323
Address
2005 PALMER AVENUE 1033, LARCHMONT, NY 10538

Signing Officer

Name
Emily Milligan
Title
Executive Director
Phone
9143036323
Signed
2025-07-02
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Emily Milligan
Formed
2000
Legal Domicile
De
Voting Board Members
11
Independent Board Members
11
Employees
6
Volunteers
200

Preparer

Firm
Dorfman Abrams Music LLC
Address
250 PEHLE AVE SUITE 702, SADDLE BROOK, NJ 07663
Preparer
Patricia Diaz CPA
Phone
2014039750
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Other: program service expenses 227,540. Management and general expenses 16,632. Fundraising expenses 5,200. Total expenses 249,372.”

FORM 990, PART XII, LINE 2C:

“The foundation did not change either its oversight process or selection process during the calendar year.”

Financial Statement Notes

PART X, LINE 2:

“The organization is a tax-exempt organization as defined by section 501(c)(3) of the internal revenue code, though it is subject to tax on income unrelated to its exempt purpose, unless that income is otherwise excluded by the code. The organization has processes presently in place to ensure the maintenance of its tax-exempt status; to identify and report unrelated income; to determine its filing and tax obligations in jurisdictions for which it has nexus; and to identify and evaluate other matters that may be considered tax positions. The organization has determined that there are no material uncertain tax positions that require recognition or disclosure in the financial statements.”

Raw XML AppendixShowing 400 of 625 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/ActivityOrMissionDesc01)TO PROMOTE AWARENESS OF BARTH SYNDROME; 2) TO EDUCATE AND SUPPORT PHYSICIANS, RESEARCH CENTERS, AND ORGANIZATIONS ADDRESSING THE CAUSES, DIAGNOSIS, TREATMENTS AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES.
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IRS990/Form990PartVIISectionAGrp/PersonNm10JAMES BAFFA
IRS990/Form990PartVIISectionAGrp/PersonNm11MARK GREENE
IRS990/Form990PartVIISectionAGrp/PersonNm12BRANDI DAGUE
IRS990/Form990PartVIISectionAGrp/PersonNm13EMILY MILLIGAN
IRS990/Form990PartVIISectionAGrp/PersonNm14LINDSAY MARJORAM
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IRS990/Form990PartVIISectionAGrp/TitleTxt0BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt10VICE CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt11TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt12SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt13EXECUTIVE DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt14DIRECTOR OF RESEARCH
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IRS990/MembersOrStockholdersInd00
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IRS990/MinutesOfCommitteesInd01
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IRS990/MissionDesc0THE BARTH SYNDROME FOUNDATION IS AN ENGAGED, GLOBAL COMMUNITY WHOSE MISSION IS SAVING LIVES THROUGH EDUCATION, ADVANCES IN TREATMENTS, AND FINDING A CURE FOR BARTH SYNDROME.
IRS990/MoreThan5000KToIndividualsInd00
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IRS990/Organization501c3Ind0X
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IRS990/OtherExpensesGrp/Desc0AUDIO VISUAL
IRS990/OtherExpensesGrp/Desc1PRINTING AND PUBLICATIO
IRS990/OtherExpensesGrp/Desc2MISCELLANEOUS
IRS990/OtherExpensesGrp/Desc3DUES AND FEES
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IRS990/OtherRevenueMiscGrp/Desc0OTHER REVENUE
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IRS990/ProgSrvcAccomActy2Grp/Desc0THIS CONFERENCE WHICH IS HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT A TIME, SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY, CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES.
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IRS990/ProgSrvcAccomActy3Grp/Desc0BSF BUILDS AWARENESS OF BARTH SYNDROME TO IMPROVE DIAGNOSIS AND CARE, WHILE ADVANCING ADVOCACY EFFORTS THAT AMPLIFY PATIENT VOICES, MOBILIZE OUR PATIENT COMMUNITY, AND SUPPORT PROGRESS IN RESEARCH AND TREATMENT ACCESS AND DRUG DEVELOPMENT POLICY
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0REPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME. THESE PROGRAMS ARE COMPRISED OF SERVICES RELATED TO ADVOCACY AND AWARENESS, COMMUNICATION AND AWARENESS, AND FAMILY SERVICES.
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IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
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IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0THE ORGANIZATION IS A TAX-EXEMPT ORGANIZATION AS DEFINED BY SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE, THOUGH IT IS SUBJECT TO TAX ON INCOME UNRELATED TO ITS EXEMPT PURPOSE, UNLESS THAT INCOME IS OTHERWISE EXCLUDED BY THE CODE. THE ORGANIZATION HAS PROCESSES PRESENTLY IN PLACE TO ENSURE THE MAINTENANCE OF ITS TAX-EXEMPT STATUS; TO IDENTIFY AND REPORT UNRELATED INCOME; TO DETERMINE ITS FILING AND TAX OBLIGATIONS IN JURISDICTIONS FOR WHICH IT HAS NEXUS; AND TO IDENTIFY AND EVALUATE OTHER MATTERS THAT MAY BE CONSIDERED TAX POSITIONS. THE ORGANIZATION HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS.
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0PART X, LINE 2:
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IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt0EUROPE
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/SpecificServicesProvidedTxt0RESEARCH GRANTS
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt0GRANTS TO RECIPIENTS LOCATED IN REGION

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