Civic Intelligence

Andrews Firefly Fund

990 • Fiscal year 2019 • EIN 81-3737330

Jan 01, 2019 to Dec 31, 2019 • Filed on Oct 26, 2020

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

27th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Liabilities / Revenue

28th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Net Margin

20th percentile

-11%

Higher net margin than 20% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Top Officer Pay

50th percentile

$0

Higher top officer pay than 50% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Asset Growth

7th percentile

-25%

Faster asset growth than 7% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2018 to 2019

Revenue Growth

31st percentile

-4.7%

Faster revenue growth than 31% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2018 to 2019

Balance Sheet
Liabilities / Assets27th percentile

Assets

Down

$166,411

Down $56,564 (-25%) from 2018

Net Assets

Down

$166,411

Down $56,564 (-25%) from 2018

Liabilities

Flat

$0

Flat from 2018

Revenue And Expenses
Liabilities / Revenue28th percentileNet Margin20th percentile

Revenue

Down

$508,577

Down $24,996 (-4.7%) from 2018

Expenses

Up

$563,451

Up $189,878 (+51%) from 2018

Net Income

Down

-$54,874

Down $214,874 (-134%) from 2018

Historical Trend

Balance Sheet Trend

Asset Growth7th 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

2019

Assets$166,411
Liabilities$0
Net Assets$166,411
Open 2019 Filing

Operations Trend

Revenue Growth31st 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

2019

Revenue$508,577
Expenses$563,451
Net Income-$54,874
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2019 to Dec 31, 2019
Signed
Oct 26, 2020
Return Version
2019v5.0
Gross Receipts
$508,577
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$221,285$178,179▼ $43,106
Loans From Officers Directors$0--
Accounts Receivable-$-11,768-
Total Assets$221,285$166,411▼ $54,874
Liabilities
Accounts Payable and Accrued Expenses$0--
Grants Payable$0--
Mortgage Notes Payable Secured by Investment Property$0--
Unsecured Notes Loans Payable$0--
Deferred Revenue$0--
Escrow Account Liability$0--
Tax Exempt Bond Liabilities$0--
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$221,285$166,411▼ $54,874
Net Assets With Donor Restrictions$0$0→ $0
Total Net Assets Fund Balance$221,285$166,411▼ $54,874
Total Liabilities and Net Assets / Fund Balance$221,285$166,411▼ $54,874
Compensation and Service Providers
Top Officer Pay50th percentile

Board Members and Trustees

NameTitle
MariBen RamseyPresident
Amy WhiteBoard of Directors
Ben MachielseBoard of Directors
Chris AndrewsBoard of Directors
Marianne DwightBoard of Directors
Augustine ParkDirector
Beryl CrowleyDirector

Highest Paid Contractors

ContractorServicesLocationCompensation
3D CommunicationsProgram Services15480 Annapolis 202, Bowie, MD 20715$141,395
Revenue and Support

Revenue Composition

Contributions and Grants
$508,577
Program Service Revenue
$0
Investment Income
$0
Other Revenue
$0
All Other Contributions
$508,577
Change in Net Assets
$-54,874
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$484,124
Salaries, Compensation, and Employee Benefits$77,872
Total Fundraising Expense$64,447
Professional Fundraising Fees$1,455
Grants and Similar Amounts Paid$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Management$298,234$18,496$23,859$340,589
Fees for Services Other$70,982$13,316$18,129$102,427
Current Officers, Directors, Trustees, and Key Employees$53,177$10,030$13,528$76,735
Travel$21,070$3,952$5,381$30,403
Advertising$4,630$868$1,182$6,680
Fees for Services Accounting$1,779$334$454$2,567
Fees for Services Professional Fundraising--$1,455$1,455
Payroll Taxes$788$148$201$1,137
Insurance$515$96$131$742
Office Expenses$496$93$127$716
Total Functional Expenses$451,671$47,333$64,447$563,451
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$1,455
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--
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

“Reviewed at a board meeting prior to execution and 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 members review and approve all employee compensation.”

Form 990, Part VI, Section C, Line 19

“Maintained at main address, available on GuideStar 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
President
Phone
5126949779
Signed
2020-10-26

Organization Details

Principal Officer
MariBen Ramsey
Formed
2015
Legal Domicile
TX
Voting Board Members
8
Independent Board Members
8
Employees
0
Volunteers
10
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Contracts, bookkeeping, consultants, and general services”

Raw XML AppendixShowing 400 of 464 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/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/PensionPlanContributionsGrp/ProgramServicesAmt00
IRS990/PensionPlanContributionsGrp/TotalAmt00
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/ExpenseAmt045167
IRS990/ProgSrvcAccomActy2Grp/GrantAmt00
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt094139
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/ExpenseAmt045167
IRS990/ProgSrvcAccomActy3Grp/GrantAmt00
IRS990/ProgSrvcAccomActy3Grp/RevenueAmt062759
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0533573
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt096400
IRS990/PYInvestmentIncomeAmt00
IRS990/PymtTravelEntrtnmntPubOfclGrp/FundraisingAmt00
IRS990/PymtTravelEntrtnmntPubOfclGrp/ManagementAndGeneralAmt00
IRS990/PymtTravelEntrtnmntPubOfclGrp/ProgramServicesAmt00
IRS990/PymtTravelEntrtnmntPubOfclGrp/TotalAmt00
IRS990/PYOtherExpensesAmt0272533
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0160000
IRS990/PYSalariesCompEmpBnftPaidAmt00
IRS990/PYTotalExpensesAmt0373573
IRS990/PYTotalProfFndrsngExpnsAmt04640
IRS990/PYTotalRevenueAmt0533573
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0-54874
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/RevenueAmt0351679
IRS990/RoyaltiesGrp/FundraisingAmt00
IRS990/RoyaltiesGrp/ManagementAndGeneralAmt00
IRS990/RoyaltiesGrp/ProgramServicesAmt00
IRS990/RoyaltiesGrp/TotalAmt00
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0508577
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0533573
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0395959
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt01438109
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/OtherIncome170Grp/TotalAmt00
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct01
IRS990ScheduleA/PublicSupportPY170Pct01
IRS990ScheduleA/PublicSupportTotal170Amt01438109
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsPY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0508577
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0533573
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0395959
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt01438109
IRS990ScheduleA/TotalSupportAmt01438109
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus2YearsAmt00
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
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0Reviewed at a board meeting prior to execution and filing
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Annually each board member will complete a conflict of interest disclosure form.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2The board members review and approve all employee compensation.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3Maintained at main address, available on GuideStar and available upon request
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4Contracts, bookkeeping, consultants, and general services
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section B, Line 11b
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Section B, Line 12c
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990, Part VI, Section B, Line 15
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3Form 990, Part VI, Section C, Line 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4Form 990, Part IX, Line 11g
IRS990/SchoolOperatingInd00
IRS990/SignificantChangeInd00
IRS990/SignificantNewProgramSrvcInd00
IRS990/SubjectToExcsTaxNetInvstIncInd00
IRS990/SubjectToProxyTaxInd00
IRS990/SubjToTaxRmnrtnExPrchtPymtInd00
IRS990/TaxablePartyNotificationInd00
IRS990/TaxExemptBondLiabilitiesGrp/BOYAmt00
IRS990/TaxExemptBondsInd00
IRS990/TerminateOperationsInd00
IRS990/TotalAssetsBOYAmt0221285
IRS990/TotalAssetsEOYAmt0166411
IRS990/TotalAssetsGrp/BOYAmt0221285
IRS990/TotalAssetsGrp/EOYAmt0166411
IRS990/TotalCompGreaterThan150KInd00
IRS990/TotalContributionsAmt0508577

Document Assets

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Filings

Displayed year

2019 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$166,411
Liabilities
$0
Net assets
$166,411
Revenue
$508,577
Expenses
$563,451
Net income
-$54,874
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