Civic Intelligence

Andrews Firefly Fund

990 • Fiscal year 2017 • EIN 81-3737330

Jan 01, 2017 to Dec 31, 2017 • Filed on Aug 07, 2018

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

56th percentile

0.00x

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

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Liabilities / Revenue

56th percentile

0.00x

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

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Net Margin

72nd percentile

16%

Higher net margin than 72% of similar nonprofits.

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Top Officer Pay

76th percentile

$0

Higher top officer pay than 76% of similar nonprofits.

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

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Asset Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2017

Revenue Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2017

Balance Sheet
Liabilities / Assets56th percentile

Assets

$62,975

No earlier filing loaded for comparison.

Net Assets

$62,975

No earlier filing loaded for comparison.

Liabilities

$0

No earlier filing loaded for comparison.

Revenue And Expenses
Liabilities / Revenue56th percentileNet Margin72nd percentile

Revenue

$395,959

No earlier filing loaded for comparison.

Expenses

$332,984

No earlier filing loaded for comparison.

Net Income

$62,975

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset GrowthScore unavailable

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

2017

Assets$62,975
Liabilities$0
Net Assets$62,975
Open 2017 Filing

Operations Trend

Revenue GrowthScore unavailable

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

2017

Revenue$395,959
Expenses$332,984
Net Income$62,975
Open 2017 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2017 to Dec 31, 2017
Signed
Aug 7, 2018
Return Version
2017v2.0
Gross Receipts
$395,959
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$0$62,975▲ $62,975
Loans From Officers Directors$0$0→ $0
Total Assets$0$62,975▲ $62,975
Liabilities
Accounts Payable and Accrued Expenses$0$0→ $0
Grants Payable$0$0→ $0
Mortgage Notes Payable Secured by Investment Property$0$0→ $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$0→ $0
Net Assets / Fund Balance
Unrestricted Net Assets$0$62,975▲ $62,975
Permanently Rstr Net Assets$0$0→ $0
Temporarily Rstr Net Assets$0$0→ $0
Total Net Assets Fund Balance$0$62,975▲ $62,975
Total Liabilities and Net Assets / Fund Balance$0$62,975▲ $62,975
Compensation and Service Providers
Top Officer Pay76th percentile

Board Members and Trustees

NameTitle
Augustine ParkBoard of Directors \Co-Chair Scientific Advisory Board
Beryl CrowleyChair, Development Board
MariBen RamseyPresident
Amy WhiteBoard of Directors
Ben MachielseBoard of Directors
Chris AndrewsBoard of Directors
Marianne DwightBoard of Directors
Revenue and Support

Revenue Composition

Contributions and Grants
$395,959
Program Service Revenue
$0
Investment Income
$0
Other Revenue
$0
All Other Contributions
$395,959
Change in Net Assets
$62,975
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$279,386
Grants and Similar Amounts Paid$52,500
Total Fundraising Expense$39,733
Professional Fundraising Fees$1,098
Salaries, Compensation, and Employee Benefits$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Other$109,576$26,558$9,913$146,047
Other Expenses$55,052$16,516$20,186$91,754
Grants to Domestic Orgs$52,500--$52,500
Occupancy$11,312$3,394$4,148$18,854
Advertising$6,896$1,421$2,343$10,660
Travel$3,102$931$1,137$5,170
Office Expenses$2,773--$2,773
Insurance$1,277$383$468$2,128
Fees for Services Legal$1,200$360$440$2,000
Fees for Services Professional Fundraising--$1,098$1,098
Total Functional Expenses$243,688$49,563$39,733$332,984
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$1,098
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Interested-Person Transactions

Interested PartyRelationshipDescriptionShared RevenueAmount
MariBen RamseyFormer contractor \ current board presidentFormationNo$1,200

Loans and Receivables

Line ItemBeginningEndChange
Loans from Officers, Directors, Trustees, and Key Employees$0$0→ $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 family members
No
Business relationship with organization members
Yes
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 A, Line 2

“Andrews Firefly Fund was created by Pam and Chris Andrews, the parents of two children diagnosed with Niemann-Pick Type C1 (NPC1) is a rare, genetic neurodegenerative disease that currently has no cure. The organization currently has no employees and is run with the assistance of two consultants. Pam and Chris Andrews are married and Beryl Crowley is Pam Andrews' mother.”

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

“Provided complete copy to board members by email prior to filing.”

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

“Annually each board member will complete a conflict of interest disclosure form. Additionally each board member is required to disclose any potential conflicts that arise during the year but which was not previously disclosed because such conflict did not exist at the time the annual disclosure forms were completed.”

Form 990, Part VI, Section B, Line 15

“There are no employees but noninterested board members review and approve all expenditures including compensation to consultants.”

Form 990, Part VI, Section C, Line 19

“Maintained at main address, available on Guidestair 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
2018-08-07

Organization Details

Principal Officer
MariBen Ramsey
Formed
2015
Legal Domicile
TX
Voting Board Members
7
Independent Board Members
7
Employees
0
Volunteers
7
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“There are no employees of the organization. Fees include program expenses, consulting fees, travel and other general operating expenses.”

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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/Desc0Medical Research The primary goal of the Firefly Fund is to identify, fund and support the advancement of translational and medical research for potential therapies that will halt the progression of and cure NPC. The Firefly Fund is working directly with scientists and industry who are at the forefront of this critical work. a. The University of Texas -- The Martin Lab b. Einstein College of Medicine - The Walkley Lab c. The University of Pennsylvania -- The Vite Lab d. Washington University at St. Louis -- The Ory Lab
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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/ProgSrvcAccomActy2Grp/Desc0Newborn Screening (150k) The Firefly Fund established and is managing the Newborn Screening Initiative for NPC that is comprised of a national working group of clinicians, scientists, community advocates, and pharmaceutical partners. This work includes researching, developing and advancing a strategic plan with the goal of adding NPC to newborn screening lists nationwide.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Family Support: As science advances for NPC, a number of clinical trials are underway that offer meaningful hope for families; however, clinical trial sites are often far from where patients live. Participating in these studies can present many challenges and barriers to families, especially low-income families. The Firefly Fund supports families who face geographic constraints, insurance barriers and limited access to medical care by providing funds to nonprofit hospitals and medical centers to support healthcare services for those affected by NPC.
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IRS990ScheduleA/OtherIncome170Grp/TotalAmt00
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportTotal170Amt0395959
IRS990ScheduleA/SubstantialContributorsTotAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/CurrentTaxYearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0395959
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt0395959
IRS990ScheduleA/TotalSupportAmt0395959
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt00
IRS990/ScheduleBRequiredInd01
IRS990/ScheduleJRequiredInd00
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/NameOfInterested/PersonNm0MariBen Ramsey
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/RelationshipDescriptionTxt0Former contractor \ current board president
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/SharingOfRevenuesInd00
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionAmt01200
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionDesc0Formation
IRS990ScheduleL/SupplementalInformationDetail/ExplanationTxt0MariBen Ramsey was initially engaged as an independent contractor to provide organizational formation services. Her compensation related relationship was limited to the initial formation. She no longer provides paid services for the organization and currently services a President of the Board.
IRS990ScheduleL/SupplementalInformationDetail/FormAndLineReferenceDesc0Schedule L, Part IV
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0Andrews Firefly Fund was created by Pam and Chris Andrews, the parents of two children diagnosed with Niemann-Pick Type C1 (NPC1) is a rare, genetic neurodegenerative disease that currently has no cure. The organization currently has no employees and is run with the assistance of two consultants. Pam and Chris Andrews are married and Beryl Crowley is Pam Andrews' mother.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Provided complete copy to board members by email prior to filing.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2Annually each board member will complete a conflict of interest disclosure form. Additionally each board member is required to disclose any potential conflicts that arise during the year but which was not previously disclosed because such conflict did not exist at the time the annual disclosure forms were completed.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3There are no employees but noninterested board members review and approve all expenditures including compensation to consultants.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4Maintained at main address, available on Guidestair and available upon request.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5There are no employees of the organization. Fees include program expenses, consulting fees, travel and other general operating expenses.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section A, Line 2
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Section B, Line 11b
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990, Part VI, Section B, Line 12c
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3Form 990, Part VI, Section B, Line 15
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4Form 990, Part VI, Section C, Line 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc5Form 990, Part IX, Line 11g
IRS990/SchoolOperatingInd00
IRS990/SignificantChangeInd00
IRS990/SignificantNewProgramSrvcInd00
IRS990/SubjectToProxyTaxInd00
IRS990/TaxablePartyNotificationInd00
IRS990/TaxExemptBondLiabilitiesGrp/BOYAmt00
IRS990/TaxExemptBondLiabilitiesGrp/EOYAmt00
IRS990/TaxExemptBondsInd00
IRS990/TemporarilyRstrNetAssetsGrp/BOYAmt00
IRS990/TemporarilyRstrNetAssetsGrp/EOYAmt00
IRS990/TempOrPermanentEndowmentsInd00
IRS990/TerminateOperationsInd00
IRS990/TotalAssetsBOYAmt00
IRS990/TotalAssetsEOYAmt062975
IRS990/TotalAssetsGrp/BOYAmt00
IRS990/TotalAssetsGrp/EOYAmt062975
IRS990/TotalCompGreaterThan150KInd00
IRS990/TotalContributionsAmt0395959
IRS990/TotalEmployeeCnt00
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt039733
IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt049563
IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt0243688
IRS990/TotalFunctionalExpensesGrp/TotalAmt0332984
IRS990/TotalGrossUBIAmt00
IRS990/TotalLiabilitiesBOYAmt00
IRS990/TotalLiabilitiesEOYAmt00
IRS990/TotalLiabilitiesGrp/BOYAmt00
IRS990/TotalLiabilitiesGrp/EOYAmt00
IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt00
IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt062975
IRS990/TotalOtherCompensationAmt00
IRS990/TotalOtherProgSrvcExpenseAmt00
IRS990/TotalOtherProgSrvcGrantAmt00
IRS990/TotalOtherProgSrvcRevenueAmt00
IRS990/TotalProgramServiceExpensesAmt0243688
IRS990/TotalProgramServiceRevenueAmt00
IRS990/TotalReportableCompFromOrgAmt00
IRS990/TotalRevenueGrp/ExclusionAmt00
IRS990/TotalRevenueGrp/RelatedOrExemptFuncIncomeAmt00
IRS990/TotalRevenueGrp/TotalRevenueColumnAmt0395959
IRS990/TotalRevenueGrp/UnrelatedBusinessRevenueAmt00
IRS990/TotalVolunteersCnt07
IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt00
IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt062975
IRS990/TotReportableCompRltdOrgAmt00
IRS990/TravelGrp/FundraisingAmt01137
IRS990/TravelGrp/ManagementAndGeneralAmt0931
IRS990/TravelGrp/ProgramServicesAmt03102
IRS990/TravelGrp/TotalAmt05170
IRS990/TrnsfrExmptNonChrtblRltdOrgInd00
IRS990/TypeOfOrganizationCorpInd0X
IRS990/UnrelatedBusIncmOverLimitInd00
IRS990/UnrestrictedNetAssetsGrp/BOYAmt00
IRS990/UnrestrictedNetAssetsGrp/EOYAmt062975
IRS990/UnsecuredNotesLoansPayableGrp/BOYAmt00
IRS990/UnsecuredNotesLoansPayableGrp/EOYAmt00
IRS990/UponRequestInd0X
IRS990/USAddress/AddressLine1Txt01707 Elton Lane
IRS990/USAddress/CityNm0Austin
IRS990/USAddress/StateAbbreviationCd0TX
IRS990/USAddress/ZIPCd078703
IRS990/VotingMembersGoverningBodyCnt07
IRS990/VotingMembersIndependentCnt07
IRS990/WebsiteAddressTxt0https://firefly.fund/
IRS990/WhistleblowerPolicyInd00
ReturnHeader/BuildTS02019-02-21 02:37:17Z
ReturnHeader/BusinessOfficerGrp/PersonNm0MariBen Ramsey
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0President
ReturnHeader/BusinessOfficerGrp/PhoneNum05126949779
ReturnHeader/BusinessOfficerGrp/SignatureDt02018-08-07
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0ANDREWS FIREFLY FUND
ReturnHeader/Filer/BusinessNameControlTxt0ANDR
ReturnHeader/Filer/EIN0813737330
ReturnHeader/Filer/PhoneNum05126949779
ReturnHeader/Filer/USAddress/AddressLine1Txt01707 ELTON LANE
ReturnHeader/Filer/USAddress/CityNm0AUSTIN
ReturnHeader/Filer/USAddress/StateAbbreviationCd0TX
ReturnHeader/Filer/USAddress/ZIPCd078703
ReturnHeader/FilingSecurityInformation/IPAddress/IPv4AddressTxt0198.213.89.65
ReturnHeader/ReturnTs02018-11-14T11:03:30-07:00
ReturnHeader/ReturnTypeCd0990
ReturnHeader/TaxPeriodBeginDt02017-01-01
ReturnHeader/TaxPeriodEndDt02017-12-31

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2017 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$62,975
Liabilities
$0
Net assets
$62,975
Revenue
$395,959
Expenses
$332,984
Net income
$62,975
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