Civic Intelligence

Asxl Rare Research Endowment Foundation

EIN 82-3890665 • 501(c)3 • Gorham, ME

Profile

Support research and education that lead to improved quality of life for individuals with ASXL syndromes.

PO Box 102Gorham, ME 04038

arrefoundation.org

Siviq Scores

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

Liabilities / Assets

22nd percentile

0.00x

Higher debt load relative to assets than 22% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

22nd percentile

0.00x

Higher debt load relative to revenue than 22% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

88th percentile

46%

Higher net margin than 88% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

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

Asset Growth

92nd percentile

62%

Faster asset growth than 92% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

96th percentile

213%

Faster revenue growth than 96% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets22nd percentile

Assets

Up

$1,081,250

Up $412,703 (+62%) from 2023

Liabilities

Up

$1,272

Up $18 (+1.4%) from 2023

Net Assets

Up

$1,079,978

Up $412,685 (+62%) from 2023

Operations
Liabilities / Revenue22nd percentileNet Margin88th percentile

Revenue

Up

$887,604

Up $603,818 (+213%) from 2023

Expenses

Up

$474,919

Up $245,533 (+107%) from 2023

Net Income

Up

$412,685

Up $358,285 (+659%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth92nd percentile

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

$1.5M$1.0M$500K$0Assets 2019: $788,279Liabilities 2019: $0Net Assets 2019: $788,2792019Assets 2020: $607,197Liabilities 2020: $0Net Assets 2020: $607,1972020Assets 2021: $616,097Liabilities 2021: $7,124Net Assets 2021: $608,9732021Assets 2022: $614,250Liabilities 2022: $1,357Net Assets 2022: $612,8932022Assets 2023: $668,547Liabilities 2023: $1,254Net Assets 2023: $667,2932023Assets 2024: $1,081,250Liabilities 2024: $1,272Net Assets 2024: $1,079,9782024

Highlighted filing

2024

Assets$1,081,250
Liabilities$1,272
Net Assets$1,079,978
Open 2024 Filing

Operations Trend

Revenue Growth96th percentile

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

$1.0M$500K$0-$500KRevenue 2019: $896,818Expenses 2019: $122,037Net Income 2019: $774,7812019Revenue 2020: $97,339Expenses 2020: $278,421Net Income 2020: -$181,0822020Revenue 2021: $286,093Expenses 2021: $284,960Net Income 2021: $1,1332021Revenue 2022: $228,516Expenses 2022: $224,596Net Income 2022: $3,9202022Revenue 2023: $283,786Expenses 2023: $229,386Net Income 2023: $54,4002023Revenue 2024: $887,604Expenses 2024: $474,919Net Income 2024: $412,6852024

Highlighted filing

2024

Revenue$887,604
Expenses$474,919
Net Income$412,685
Open 2024 Filing

Filings

Most recent year

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

Open filing
Assets
$1,081,250
Liabilities
$1,272
Net assets
$1,079,978
Revenue
$887,604
Expenses
$474,919
Net income
$412,685
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$1.08$0.00$1.08$0.89$0.47$0.41
2023Detailed filing. Detailed filing data is available for this year.$0.67$0.00$0.67$0.28$0.23$0.05
2022Detailed filing. Detailed filing data is available for this year.$0.61$0.00$0.61$0.23$0.22$0.00
2021Detailed filing. Detailed filing data is available for this year.$0.62$0.01$0.61$0.29$0.28$0.00
2020Detailed filing. Detailed filing data is available for this year.$0.61$0.00$0.61$0.10$0.28$0.18
2019Detailed filing. Detailed filing data is available for this year.$0.79$0.00$0.79$0.90$0.12$0.77
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 3, 2025
Return Version
2024v5.0
Gross Receipts
$887,604
Mission and Program Overview

Mission

Support research and education that lead to improved quality of life for individuals with ASXL syndromes.

A family-led organization that supports research to increase the understanding of the ASXL gene family and improve care for those living with ASXL Syndromes

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$72,778$688,427▲ $615,649
Cash and Non-Interest-Bearing Accounts$570,363$379,490▼ $190,873
Pledges and Grants Receivable$25,406$10,931▼ $14,475
Total Assets$668,547$1,081,250▲ $412,703
Other Assets Total-$2,402-
Liabilities
Accounts Payable and Accrued Expenses$1,254$1,272▲ $18
Total Liabilities$1,254$1,272▲ $18
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$572,293$984,978▲ $412,685
Net Assets With Donor Restrictions$95,000$95,000→ $0
Total Net Assets Fund Balance$667,293$1,079,978▲ $412,685
Total Liabilities and Net Assets / Fund Balance$668,547$1,081,250▲ $412,703
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseTotal
Amanda JohnsonExecutive DirectorFT$105,900$105,900

Board Members and Trustees

NameTitle
Laura BadmaevPresident
Amanda ScheirerDirector
Julie LopezDirector
Lauren AdamsDirector
Michael SaladDirector
Sankar MadhavanDirector
Daniel OrdowerTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$854,303
Program Service Revenue
$9,154
Investment Income
$24,147
Other Revenue
$0
All Other Contributions
$851,826
Change in Net Assets
$412,685
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$234,500
Salaries, Compensation, and Employee Benefits$122,150
Other Expenses$118,269
Total Fundraising Expense$26,043
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$176,550--$176,550
Current Officers, Directors, Trustees, and Key Employees$63,540$21,180$21,180$105,900
Fees for Services Other$21,990$28,048-$50,038
Grants to Domestic Individuals$37,200--$37,200
Conferences and Meetings$31,465--$31,465
Foreign Grants$20,750--$20,750
Advertising$7,581$8,512$1,042$17,135
Payroll Taxes$5,205$1,735$1,735$8,675
Other Salaries and Wages$7,500--$7,500
Information Technology$239$4,627$1,768$6,634
Travel$4,416$1,624-$6,040
Office Expenses$1,176$1,409$318$2,903
Other Expenses$30$2,339-$2,369
Insurance-$1,571-$1,571
All Other Expenses-$114-$114
Other Employee Benefits$75--$75
Total Functional Expenses$377,717$71,159$26,043$474,919
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Kennedy Krieger InstituteBaltimore, MD-Support for various studies regarding outcome measurements and research priorities$119,341
Regents University of California Los AngelesLos Angeles, CA-Support for the ASXL Registry and Biobank held at UCLA$50,000
Uplifting Athletes IncDoylestown, PA-Support of Young Investigators award$10,000

International Compliance

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
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
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
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

“Draft 990 and financials made available to all directors for review. Approval of filing given by the governing body.”

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

“Written conflict of interest policy provided at annual meetings for review and signature by all Directors.”

Form 990, Part VI, Section B, Line 15

“Executive Director salary is reviewed each year by the Board of Directors and compared to similarly situation organizations.”

Form 990, Part VI, Section C, Line 19

“All documents are available upon written request to the organization's address.”

Filing and Contact Details

Filer

Filer Name
Asxl Rare Research Endowment Foundation
EIN
82-3890665
Phone
2078818080
Address
PO Box 102, Gorham, ME 04038

Signing Officer

Name
Daniel Ordower
Title
Treasurer
Phone
9179711262
Signed
2025-11-03

Organization Details

Principal Officer
Amanda Johnson
Formed
2018
Legal Domicile
De
Voting Board Members
7
Independent Board Members
7
Employees
2
Volunteers
20
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Contracted scientific advisory and temporary administrative and planning help.”

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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/PYContributionsGrantsAmt0262982
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt064616
IRS990/PYInvestmentIncomeAmt0518
IRS990/PYOtherExpensesAmt044618
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt020286
IRS990/PYRevenuesLessExpensesAmt054400
IRS990/PYSalariesCompEmpBnftPaidAmt0120152
IRS990/PYTotalExpensesAmt0229386
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0283786
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0412685
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/RelatedOrganizationsAmt00
IRS990/RentalIncomeOrLossGrp/PersonalAmt00
IRS990/RentalIncomeOrLossGrp/RealAmt00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd00
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/RevenueAmt00
IRS990/RoyaltiesRevenueGrp/ExclusionAmt00
IRS990/RoyaltiesRevenueGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/RoyaltiesRevenueGrp/TotalRevenueColumnAmt00
IRS990/RoyaltiesRevenueGrp/UnrelatedBusinessRevenueAmt00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt072778
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0688427
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0863458
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0283268
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0228341
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0285640
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt095386
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt01756093
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt024147
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt0518
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt0175
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt0453
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt01953
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt027246
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt012154
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/OtherIncome170Grp/TotalAmt00
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.51801
IRS990ScheduleA/PublicSupportPY170Pct00.30355
IRS990ScheduleA/PublicSupportTotal170Amt0923784
IRS990ScheduleA/SubstantialContributorsTotAmt0832309
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0863458
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0283268
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0228341
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0285640
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt095386
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt01756093
IRS990ScheduleA/TotalSupportAmt01783339
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt00
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd01
IRS990ScheduleF/BoycottCountriesInd00
IRS990ScheduleF/ForeignCorpOwnershipInd00
IRS990ScheduleF/ForeignIndividualsGrantsGrp/CashGrantAmt020750
IRS990ScheduleF/ForeignIndividualsGrantsGrp/RecipientCnt016
IRS990ScheduleF/ForeignIndividualsGrantsGrp/RegionTxt0Europe (including Iceland and Greenland)
IRS990ScheduleF/ForeignIndividualsGrantsGrp/TypeOfAssistanceTxt0Travel grants and speaker honoria for conference
IRS990ScheduleF/ForeignIndividualsGrantsGrp/ValuationMethodUsedDesc0Cash
IRS990ScheduleF/ForeignPartnershipInd00
IRS990ScheduleF/InterestInForeignTrustInd00
IRS990ScheduleF/PassiveForeignInvestmestCoInd00
IRS990ScheduleF/TransferToForeignCorpInd00
IRS990ScheduleI/GrantRecordsMaintainedInd01
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/CashGrantAmt040375
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/GrantTypeTxt0Travel stipends and honoria for conference attendance
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/RecipientCnt048
IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/ValuationMethodUsedDesc0Cash
IRS990ScheduleI/RecipientTable/CashGrantAmt050000
IRS990ScheduleI/RecipientTable/CashGrantAmt1119341
IRS990ScheduleI/RecipientTable/CashGrantAmt210000
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0Support for the ASXL Registry and Biobank held at UCLA
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt1Support for various studies regarding outcome measurements and research priorities
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt2Support of Young Investigators award
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0Regents University of California Los Angeles
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1Kennedy Krieger Institute
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt2Uplifting Athletes Inc
IRS990ScheduleI/RecipientTable/RecipientEIN0956006143
IRS990ScheduleI/RecipientTable/RecipientEIN1520607971
IRS990ScheduleI/RecipientTable/RecipientEIN2341986485
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt010920 Wilshire Blvd
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt1707 N Broadway
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt28 Atkinson Drive
IRS990ScheduleI/RecipientTable/USAddress/AddressLine2Txt0Suite 600
IRS990ScheduleI/RecipientTable/USAddress/AddressLine2Txt1PO Box 574
IRS990ScheduleI/RecipientTable/USAddress/CityNm0Los Angeles
IRS990ScheduleI/RecipientTable/USAddress/CityNm1Baltimore
IRS990ScheduleI/RecipientTable/USAddress/CityNm2Doylestown
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0CA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd1MD
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd2PA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd090024
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd121205
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd218901
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc0Cash
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc1Cash
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc2Cash
IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0All grants are subject to a contractual agreement monitored by the organization for compliance.
IRS990ScheduleI/SupplementalInformationDetail/FormAndLineReferenceDesc0Schedule I, Part I, Line 2
IRS990ScheduleI/Total501c3OrgCnt03

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