Civic Intelligence

Andrews Firefly Fund

990 • Fiscal year 2020 • EIN 81-3737330

Jan 01, 2020 to Dec 31, 2020 • Filed on Nov 15, 2021

Organization Profilefirefly.fund
1707 Elton LaneAustin, TX 78703

(512) 694-9779

Siviq Scores

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

Liabilities / Assets

57th percentile

0.08x

Higher debt load relative to assets than 57% of similar nonprofits.

2020 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2020

Liabilities / Revenue

46th percentile

0.04x

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

2020 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2020

Net Margin

59th percentile

12%

Higher net margin than 59% of similar nonprofits.

2020 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2020

Top Officer Pay

90th percentile

$110,120

Higher top officer pay than 90% of similar nonprofits.

Top officer pay equals 20.6% of source-year revenue.

2020 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2020

Asset Growth

84th percentile

57%

Faster asset growth than 84% of similar nonprofits.

2020 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2019 to 2020

Revenue Growth

60th percentile

5.1%

Faster revenue growth than 60% of similar nonprofits.

2020 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets57th percentile

Assets

Up

$261,346

Up $94,935 (+57%) from 2019

Net Assets

Up

$239,978

Up $73,567 (+44%) from 2019

Liabilities

Up

$21,368

Up $21,368 from 2019

Revenue And Expenses
Liabilities / Revenue46th percentileNet Margin59th percentile

Revenue

Up

$534,468

Up $25,891 (+5.1%) from 2019

Expenses

Down

$472,285

Down $91,166 (-16%) from 2019

Net Income

Up

$62,183

Up $117,057 (+213%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth84th percentile

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

$600K$400K$200K$0Assets 2017: $62,975Liabilities 2017: $0Net Assets 2017: $62,9752017Assets 2018: $222,975Liabilities 2018: $0Net Assets 2018: $222,9752018Assets 2019: $166,411Liabilities 2019: $0Net Assets 2019: $166,4112019Assets 2020: $261,346Liabilities 2020: $21,368Net Assets 2020: $239,9782020Assets 2021: $465,686Liabilities 2021: $2,515Net Assets 2021: $463,1712021Assets 2022: $292,418Liabilities 2022: $0Net Assets 2022: $292,4182022Assets 2023: $104,552Liabilities 2023: $4,835Net Assets 2023: $99,7172023Assets 2024: $13,374Liabilities 2024: $1,787Net Assets 2024: $11,5872024

Highlighted filing

2020

Assets$261,346
Liabilities$21,368
Net Assets$239,978
Open 2020 Filing

Operations Trend

Revenue Growth60th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$1.0M$500K$0-$500KRevenue 2017: $395,959Expenses 2017: $332,984Net Income 2017: $62,9752017Revenue 2018: $533,573Expenses 2018: $373,573Net Income 2018: $160,0002018Revenue 2019: $508,577Expenses 2019: $563,451Net Income 2019: -$54,8742019Revenue 2020: $534,468Expenses 2020: $472,285Net Income 2020: $62,1832020Revenue 2021: $553,765Expenses 2021: $342,210Net Income 2021: $211,5552021Revenue 2022: $38,267Expenses 2022: $209,020Net Income 2022: -$170,7532022Revenue 2023: $55,210Expenses 2023: $247,911Net Income 2023: -$192,7012023Revenue 2024: $649,177Expenses 2024: $737,307Net Income 2024: -$88,1302024

Highlighted filing

2020

Revenue$534,468
Expenses$472,285
Net Income$62,183
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2020 to Dec 31, 2020
Signed
Nov 15, 2021
Return Version
2020v4.0
Gross Receipts
$534,468
Mission and Program Overview

Mission

The Firefly Fund Neurodegenerative diseases affect children many different ways, but their families share a common and grave reality. These children typically die before the age of 20. Today, the Firefly Fund is focused on Neimann-Pick Type C (NPC), also referred to as Childhood Alzheimer's. NPC results in the buildup of cholesterol in the brain, liver, and spleen, leading to progressive neurodegeneration and organ damage. Currently, there are no FDA approved therapies to treat NPC and there is no cure.

To fund and support reasearch and education to acclerate a cure for rare and fatal neurodegenerative genetic diseases that affect children.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$177,795$239,978▲ $62,183
Receivables From Officers Etc-$21,368-
Loans From Officers Directors$0$21,368▲ $21,368
Accounts Receivable-$0-
Total Assets$177,795$261,346▲ $83,551
Other Assets Total-$0-
Liabilities
Accounts Payable and Accrued Expenses$0$0→ $0
Grants Payable$0$0→ $0
Mortgage Notes Payable Secured by Investment Property$0--
Unsecured Notes Loans Payable$0$0→ $0
Other Liabilities$0--
Deferred Revenue$0$0→ $0
Escrow Account Liability$0$0→ $0
Tax Exempt Bond Liabilities$0$0→ $0
Total Liabilities$0$21,368▲ $21,368
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$177,795$239,978▲ $62,183
Net Assets With Donor Restrictions$0$0→ $0
Total Net Assets Fund Balance$177,795$239,978▲ $62,183
Total Liabilities and Net Assets / Fund Balance$177,795$261,346▲ $83,551
Compensation and Service Providers
Top Officer Pay90th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Beryl Pam AndrewsExecutive DirectorFT$110,120$110,120

Board Members and Trustees

NameTitle
MariBen RamseyCo-Chair
Marianne DwightCo-Chair
Amy WhiteBoard of Directors
Ben MachielseBoard of Directors
Chris AndrewsBoard of Directors
Augustine ParkDirector
Beryl CrowleyDirector
Revenue and Support

Revenue Composition

Contributions and Grants
$534,468
Program Service Revenue
$0
Investment Income
$0
Other Revenue
$0
All Other Contributions
$534,468
Change in Net Assets
$62,183
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$350,583
Salaries, Compensation, and Employee Benefits$120,454
Total Fundraising Expense$99,718
Professional Fundraising Fees$1,248
Grants and Similar Amounts Paid$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Office Expenses$243,084--$243,084
Current Officers, Directors, Trustees, and Key Employees$66,072$22,024$22,024$110,120
Advertising-$0$74,132$74,132
Fees for Services Other$0$20,575-$20,575
Payroll Taxes$10,334--$10,334
Travel$5,859$1,004$1,506$8,369
Fees for Services Accounting$2,272$390$584$3,246
Fees for Services Professional Fundraising--$1,248$1,248
Information Technology-$501$126$627
Insurance$386$66$98$550
Total Functional Expenses$328,007$44,560$99,718$472,285
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$1,248
Fundraising Direct Expenses$0
Fundraising Gross Income$0
Gaming Direct Expenses$0
Gaming Gross Income$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Loans from Officers, Directors, Trustees, and Key Employees$0$21,368▲ $21,368
Receivables from Officers, Directors, Trustees, and Key Employees-$21,368-
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
No
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 A, Line 2

“Pam Andrews and Chris Andrews are spouses and Beryl Crowley and Pam Andrews and are mother and daughter.”

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

“Reviewed by the board prior to execution and filing. The Co-Chairs reviewed the 990 and sent it to board for review prior to filing.”

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

“Annually each board member will complete a conflict of interest disclosure form.”

Form 990, Part VI, Section B, Line 15

“The board reviews and approves all employee compensation.The board reviewed other organizations of similar in size in our area to determine compensation.”

Form 990, Part VI, Section C, Line 19

“Maintained at main address, available on GuideStar | Candid and available upon request”

Filing and Contact Details

Filer

Filer Name
Andrews Firefly Fund
EIN
81-3737330
Phone
5126949779
Address
1707 ELTON LANE, AUSTIN, TX 78703
Doing Business As
Firefly Fund

Signing Officer

Name
MariBen Ramsey
Title
Co-Chair
Phone
5126949779
Signed
2021-11-15

Organization Details

Principal Officer
MariBen Ramsey
Formed
2015
Legal Domicile
TX
Voting Board Members
7
Independent Board Members
5
Employees
1
Volunteers
7
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Administrative and bookkeeping services.”

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IRS990/Desc0Newborn Screening - Since 2017 Firefly has been leading the NPC NBS Initiative with a vision that all newborns will be screened for NPC, enabling early diagnosis and intervention. The Initiative is led by a broad stakeholder working group, chaired by Drs. Elizabeth Berry-Kravis of RUSH and Dr. Marc Patterson of Mayo Clinic, which includes NPC community and industry stakeholders. Twenty nine (29) NPC and NBS expert clinicians from around the US and Canada make up the NPC NBS Clinical Roundtable serving the Initiative as advisors.
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IRS990/MissionDesc0The Firefly Fund Neurodegenerative diseases affect children many different ways, but their families share a common and grave reality. These children typically die before the age of 20. Today, the Firefly Fund is focused on Neimann-Pick Type C (NPC), also referred to as Childhood Alzheimer's. NPC results in the buildup of cholesterol in the brain, liver, and spleen, leading to progressive neurodegeneration and organ damage. Currently, there are no FDA approved therapies to treat NPC and there is no cure.
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IRS990/NetIncomeOrLossGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt00
IRS990/NetIncomeOrLossGrp/UnrelatedBusinessRevenueAmt00
IRS990/NetRentalIncomeOrLossGrp/ExclusionAmt00
IRS990/NetRentalIncomeOrLossGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/NetRentalIncomeOrLossGrp/TotalRevenueColumnAmt00
IRS990/NetRentalIncomeOrLossGrp/UnrelatedBusinessRevenueAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt00
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0177795
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt0239978
IRS990/NoncashContributionsAmt00
IRS990/NondeductibleContributionsInd00
IRS990/OfficeExpensesGrp/ProgramServicesAmt0243084
IRS990/OfficeExpensesGrp/TotalAmt0243084
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/EOYAmt00
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherLiabilitiesGrp/BOYAmt00
IRS990/OtherRevenueTotalAmt00
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/ProgramServicesAmt010334
IRS990/PayrollTaxesGrp/TotalAmt010334
IRS990/PoliticalCampaignActyInd00
IRS990/PrincipalOfficerNm0MariBen Ramsey
IRS990/PriorPeriodAdjustmentsAmt00
IRS990/ProfessionalFundraisingInd00
IRS990/ProgSrvcAccomActy2Grp/Desc0Medical Research - Supporting research that could provide novel therapeutics for the treatment of Niemann Pick Type C Disease.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt032801
IRS990/ProgSrvcAccomActy2Grp/GrantAmt00
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt053447
IRS990/ProgSrvcAccomActy3Grp/Desc0Patient Access Fund - Firefly Fund works with Academic Centers of Excellence and Patient Advocacy organizations to remove barriers to care and access to therapies necessary for their loved ones with an NPC diagnosis.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt032801
IRS990/ProgSrvcAccomActy3Grp/GrantAmt00
IRS990/ProgSrvcAccomActy3Grp/RevenueAmt053447
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0508577
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt00
IRS990/PYInvestmentIncomeAmt00
IRS990/PYOtherExpensesAmt0484124
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0-54874
IRS990/PYSalariesCompEmpBnftPaidAmt077872
IRS990/PYTotalExpensesAmt0563451
IRS990/PYTotalProfFndrsngExpnsAmt01455
IRS990/PYTotalRevenueAmt0508577
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReceivablesFromOfficersEtcGrp/EOYAmt021368
IRS990/ReconcilationRevenueExpnssAmt062183
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/RevenueAmt0427574
IRS990/RoyaltiesRevenueGrp/ExclusionAmt00
IRS990/RoyaltiesRevenueGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/RoyaltiesRevenueGrp/TotalRevenueColumnAmt00
IRS990/RoyaltiesRevenueGrp/UnrelatedBusinessRevenueAmt00
IRS990ScheduleA/First5Years170Ind0X
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0521349
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0508577
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0533573
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0395959
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt01959458
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/OtherIncome170Grp/TotalAmt00
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportTotal170Amt01959458
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0521349
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0508577
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0533573
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0395959
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt01959458
IRS990ScheduleA/TotalSupportAmt01959458
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus3YearsAmt00
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
IRS990/ScheduleJRequiredInd00
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/BalanceDueAmt021368
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/BoardOrCommitteeApprovalInd01
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/DefaultInd00
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/LoanFromOrganizationInd0X
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/LoanPurposeTxt0personal support
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/OriginalPrincipalAmt021368
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/PersonNm0Pam Andrews
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/RelationshipWithOrgTxt0Executive Director
IRS990ScheduleL/LoansBtwnOrgInterestedPrsnGrp/WrittenAgreementInd00
IRS990ScheduleL/SupplementalInformationDetail/ExplanationTxt0Loan made to Pam Andrews. Repayment is due in FY 2021.
IRS990ScheduleL/SupplementalInformationDetail/FormAndLineReferenceDesc0Schedule L, Part II
IRS990ScheduleL/TotalBalanceDueAmt021368
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0Pam Andrews and Chris Andrews are spouses and Beryl Crowley and Pam Andrews and are mother and daughter.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Reviewed by the board prior to execution and filing. The Co-Chairs reviewed the 990 and sent it to board for review prior to filing.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2Annually each board member will complete a conflict of interest disclosure form.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3The board reviews and approves all employee compensation.The board reviewed other organizations of similar in size in our area to determine compensation.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4Maintained at main address, available on GuideStar | Candid and available upon request
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5Administrative and bookkeeping services.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section A, Line 2

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$261,346
Liabilities
$21,368
Net assets
$239,978
Revenue
$534,468
Expenses
$472,285
Net income
$62,183
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.13$0.02$0.12$6.49$7.37$0.88
2023Detailed filing. Detailed filing data is available for this year.$1.05$0.05$1.00$0.55$2.48$1.93
2022Detailed filing. Detailed filing data is available for this year.$2.92$0.00$2.92$0.38$2.09$1.71
2021Detailed filing. Detailed filing data is available for this year.$4.66$0.03$4.63$5.54$3.42$2.12
2020Detailed filing. Detailed filing data is available for this year.$2.61$0.21$2.40$5.34$4.72$0.62
2019Detailed filing. Detailed filing data is available for this year.$1.66$0.00$1.66$5.09$5.63$0.55
2018Summary only. Only limited summary data is available for this year.$2.23$0.00$2.23$5.34$3.74$1.60
2017Detailed filing. Detailed filing data is available for this year.$0.63$0.00$0.63$3.96$3.33$0.63