Civic Intelligence

Batten Disease Support and Research Association

990 • Fiscal year 2020 • EIN 91-1397792

Jan 01, 2020 to Dec 31, 2020 • Filed on May 21, 2021

2780 Airport Drive Suite 342Columbus, OH 43219

(800) 448-4570

Siviq Scores

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

Liabilities / Assets

46th percentile

0.08x

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

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Liabilities / Revenue

36th percentile

0.06x

Higher debt load relative to revenue than 36% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Net Margin

87th percentile

42%

Higher net margin than 87% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Top Officer Pay

Score unavailable

No value available

This filing does not contain officer compensation rows.

Source year 2020

Asset Growth

77th percentile

26%

Faster asset growth than 77% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Revenue Growth

80th percentile

29%

Faster revenue growth than 80% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Assets

Up

$1,028,529

Up $213,089 (+26%) from 2019

Net Assets

Up

$949,124

Up $490,467 (+107%) from 2019

Liabilities

Down

$79,405

Down $277,378 (-78%) from 2019

Revenue

Up

$1,228,607

Up $274,996 (+29%) from 2019

Expenses

Down

$718,019

Down $30,988 (-4.1%) from 2019

Net Income

Up

$510,588

Up $305,984 (+150%) from 2019

Historical Trend

Balance Sheet Trend

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

$1.5M$1.0M$500K$0Assets 2011: $1,173,122Liabilities 2011: $6,942Net Assets 2011: $1,166,1802011Assets 2012: $969,288Liabilities 2012: $12,974Net Assets 2012: $956,3142012Assets 2013: $692,878Liabilities 2013: $11,406Net Assets 2013: $681,4722013Assets 2014: $728,236Liabilities 2014: $251,368Net Assets 2014: $476,8682014Assets 2015: $657,635Liabilities 2015: $90,954Net Assets 2015: $566,6812015Assets 2016: $664,508Liabilities 2016: $324,716Net Assets 2016: $339,7922016Assets 2017: $462,370Liabilities 2017: $209,036Net Assets 2017: $253,3342017Assets 2019: $815,440Liabilities 2019: $356,783Net Assets 2019: $458,6572019Assets 2020: $1,028,529Liabilities 2020: $79,405Net Assets 2020: $949,1242020Assets 2021: $1,208,507Liabilities 2021: $53,246Net Assets 2021: $1,155,2612021Assets 2022: $1,291,125Liabilities 2022: $17,543Net Assets 2022: $1,273,5822022Assets 2023: $1,203,251Liabilities 2023: $82,983Net Assets 2023: $1,120,2682023Assets 2024: $965,863Liabilities 2024: $197,874Net Assets 2024: $767,9892024

Highlighted filing

2020

Assets$1,028,529
Liabilities$79,405
Net Assets$949,124

Operations Trend

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

$1.5M$1.0M$500K$0-$500KRevenue 2011: $647,251Expenses 2011: $562,992Net Income 2011: $84,2592011Expenses 2012: $769,2922012Revenue 2013: $647,880Expenses 2013: $936,637Net Income 2013: -$288,7572013Revenue 2014: $631,459Expenses 2014: $836,483Net Income 2014: -$205,0242014Revenue 2015: $994,203Expenses 2015: $880,137Net Income 2015: $114,0662015Revenue 2016: $812,976Expenses 2016: $1,054,316Net Income 2016: -$241,3402016Revenue 2017: $834,187Expenses 2017: $948,857Net Income 2017: -$114,6702017Revenue 2019: $953,611Expenses 2019: $749,007Net Income 2019: $204,6042019Revenue 2020: $1,228,607Expenses 2020: $718,019Net Income 2020: $510,5882020Revenue 2021: $875,074Expenses 2021: $668,937Net Income 2021: $206,1372021Revenue 2022: $1,099,485Expenses 2022: $858,302Net Income 2022: $241,1832022Revenue 2023: $746,147Expenses 2023: $952,036Net Income 2023: -$205,8892023Revenue 2024: $601,964Expenses 2024: $967,326Net Income 2024: -$365,3622024

Highlighted filing

2020

Revenue$1,228,607
Expenses$718,019
Net Income$510,588
Jump To
Filing Snapshot
Filing Period
Jan 1, 2020 to Dec 31, 2020
Signed
May 21, 2021
Return Version
2020v4.0
Gross Receipts
$1,228,607
Mission and Program Overview

Mission

Our long-term vision is a world without batten disease. Our mission is to support batten families, fund and facilitate research and advocate for treatments and a cure.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$323,061$465,498▲ $142,437
Accounts Receivable$363,982$307,269▼ $56,713
Cash and Non-Interest-Bearing Accounts$45,879$184,309▲ $138,430
Land, Buildings, and Equipment, Net$76,958$65,893▼ $11,065
Total Assets$815,440$1,028,529▲ $213,089
Other Assets Total$5,560$5,560→ $0
Liabilities
Deferred Revenue$202,732--
Unsecured Notes Loans Payable-$54,242-
Accounts Payable and Accrued Expenses$154,051$25,163▼ $128,888
Total Liabilities$356,783$79,405▼ $277,378
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$204,524$694,991▲ $490,467
Net Assets With Donor Restrictions$254,133$254,133→ $0
Total Net Assets Fund Balance$458,657$949,124▲ $490,467
Total Liabilities and Net Assets / Fund Balance$815,440$1,028,529▲ $213,089

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$65,893$31,417$97,310
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Michelle ChurchillExecutive DiFT$30,086$30,086

Board Members and Trustees

NameTitle
Darlene RoyaltyPresident
Barbara McdonoughDirector
Brock BenrothDirector
David PearceDirector
Kate HallerDirector
Mike CollinsDirector
Tony FerrandinoDirector
Trent LewisDirector
Donna FogleSecretary
John IrelandSib Represen
Bob JensenTreasurer
Barbara WuebbelsVice Preside
Revenue and Support

Revenue Composition

Contributions and Grants
$968,030
Program Service Revenue
$236,958
Investment Income
$23,619
Other Revenue
$0
All Other Contributions
$968,030
Change in Net Assets
$510,588
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$336,887
Salaries, Compensation, and Employee Benefits$285,804
Total Fundraising Expense$115,057
Grants and Similar Amounts Paid$95,328
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$113,257$45,268$48,279$206,804
Grants to Domestic Orgs$50,000--$50,000
Conferences and Meetings$47,275$2,000-$49,275
Foreign Grants$45,328--$45,328
Occupancy$21,933$8,767$9,350$40,050
Office Expenses$19,542$7,811$8,330$35,683
Current Officers, Directors, Trustees, and Key Employees$16,476$6,586$7,024$30,086
Other Employee Benefits$15,799$6,314$6,735$28,848
Travel$26,214$1,459-$27,673
Fees for Services Accounting-$26,140-$26,140
Payroll Taxes$9,991$5,844$4,231$20,066
Depreciation Depletion-$11,065-$11,065
Other Expenses$5,018$6,196$31,108$6,196
Insurance-$4,136-$4,136
Fees for Services Other$26$740-$766
Information Technology-$576-$576
All Other Expenses-$123-$123
Interest-$5-$5
Total Functional Expenses$462,010$140,952$115,057$718,019
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of North CarolinaChapel Hill, NC501c3Research$40,000
Washington UniversitySt Louis, MO501c3Research$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
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
No
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, Page 6, Part VI, Line 8B

No committees of bdsra have the authority to act on behalf of the board.

Form 990, Page 6, Part VI, Line 11B

The governing body will receive and review the return prior to filing.

Form 990, Page 6, Part VI, Line 12C

Officers, directors and key employees are required to annually sign a letter of agreement with conflict of interest policies and guidelines and disclose all relationships with other entities.

Form 990, Page 6, Part VI, Line 19

Record requests are individually reviewed and approved by the board.

Filing and Contact Details

Filer

Filer Name
Batten Disease Support
EIN
91-1397792
Phone
8004484570
Address
2780 AIRPORT DRIVE SUITE 342, COLUMBUS, OH 43219

Signing Officer

Name
Amy Fenton Parker
Title
President & CEO
Phone
8004484570
Signed
2021-05-21

Organization Details

Principal Officer
Amy Fenton Parker
Formed
1987
Legal Domicile
Oh
Voting Board Members
12
Independent Board Members
12
Employees
6
Volunteers
2

Preparer

Firm
Wells CPA LLC
Address
6500 BUSCH BLVD STE 120, COLUMBUS, OH 43229
Preparer
Donald Wells
Phone
6143968974
Supplemental Narrative

Additional Explanations

Form 990, Part XI, Line 9

Accounts payable adjustments -20,121

Raw XML AppendixShowing 400 of 504 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.

Path#Value
IRS990/AccountantCompileOrReviewInd0false
IRS990/AccountsPayableAccrExpnssGrp/BOYAmt0154051
IRS990/AccountsPayableAccrExpnssGrp/EOYAmt025163
IRS990/AccountsReceivableGrp/BOYAmt0363982
IRS990/AccountsReceivableGrp/EOYAmt0307269
IRS990/ActivitiesConductedPrtshpInd0false
IRS990/ActivityOrMissionDesc0OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE.
IRS990/AllOtherContributionsAmt0968030
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt0123
IRS990/AllOtherExpensesGrp/TotalAmt0123
IRS990/AnnualDisclosureCoveredPrsnInd0true
IRS990/BooksInCareOfDetail/PersonNm0AMY FENTON PARKER
IRS990/BooksInCareOfDetail/PhoneNum08004484570
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt02780 AIRPORT DRIVE
IRS990/BooksInCareOfDetail/USAddress/CityNm0COLUMBUS
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0OH
IRS990/BooksInCareOfDetail/USAddress/ZIPCd043219
IRS990/BusinessRlnWith35CtrlEntInd0false
IRS990/BusinessRlnWithFamMemInd0false
IRS990/BusinessRlnWithOrgMemInd0false
IRS990/CashNonInterestBearingGrp/BOYAmt045879
IRS990/CashNonInterestBearingGrp/EOYAmt0184309
IRS990/ChangeToOrgDocumentsInd0false
IRS990/CollectionsOfArtInd0false
IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt07024
IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt06586
IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt016476
IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt030086
IRS990/CompensationFromOtherSrcsInd0false
IRS990/CompensationProcessCEOInd0false
IRS990/CompensationProcessOtherInd0false
IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt02000
IRS990/ConferencesMeetingsGrp/ProgramServicesAmt047275
IRS990/ConferencesMeetingsGrp/TotalAmt049275
IRS990/ConflictOfInterestPolicyInd0true
IRS990/ConservationEasementsInd0false
IRS990/ConsolidatedAuditFinclStmtInd0false
IRS990/CreditCounselingInd0false
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt0968030
IRS990/CYGrantsAndSimilarPaidAmt095328
IRS990/CYInvestmentIncomeAmt023619
IRS990/CYOtherExpensesAmt0336887
IRS990/CYOtherRevenueAmt00
IRS990/CYProgramServiceRevenueAmt0236958
IRS990/CYRevenuesLessExpensesAmt0510588
IRS990/CYSalariesCompEmpBnftPaidAmt0285804
IRS990/CYTotalExpensesAmt0718019
IRS990/CYTotalFundraisingExpenseAmt0115057
IRS990/CYTotalProfFndrsngExpnsAmt00
IRS990/CYTotalRevenueAmt01228607
IRS990/DecisionsSubjectToApprovaInd0false
IRS990/DeductibleArtContributionInd0false
IRS990/DeductibleNonCashContriInd0false
IRS990/DeferredRevenueGrp/BOYAmt0202732
IRS990/DelegationOfMgmtDutiesInd0false
IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt011065
IRS990/DepreciationDepletionGrp/TotalAmt011065
IRS990/Desc0PROGRAMS SUCH AS THE SIBLING PROGRAM, FAMILY HELP FUND, PARENT/MENTORS AND THE GENERAL BEREAVEMENT PROGRAM ALL WILL HELP TO ALLEVIATE STRESS AND HARDSHIP ON FAMILIES WHOSE LOVED ONES ARE VICTIMS OF BATTEN DISEASE.
IRS990/DescribedInSection501c3Ind0true
IRS990/DisregardedEntityInd0false
IRS990/DocumentRetentionPolicyInd0true
IRS990/DonorAdvisedFundInd0false
IRS990/DonorRestrictionNetAssetsGrp/BOYAmt0254133
IRS990/DonorRestrictionNetAssetsGrp/EOYAmt0254133
IRS990/DonorRstrOrQuasiEndowmentsInd0false
IRS990/ElectionOfBoardMembersInd0false
IRS990/EmployeeCnt06
IRS990/EmploymentTaxReturnsFiledInd0true
IRS990/EngagedInExcessBenefitTransInd0false
IRS990/ExpenseAmt0314629
IRS990/FamilyOrBusinessRlnInd0false
IRS990/FederalGrantAuditRequiredInd0false
IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt026140
IRS990/FeesForServicesAccountingGrp/TotalAmt026140
IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt0740
IRS990/FeesForServicesOtherGrp/ProgramServicesAmt026
IRS990/FeesForServicesOtherGrp/TotalAmt0766
IRS990/ForeignActivitiesInd0false
IRS990/ForeignFinancialAccountInd0false
IRS990/ForeignGrantsGrp/ProgramServicesAmt045328
IRS990/ForeignGrantsGrp/TotalAmt045328
IRS990/ForeignOfficeInd0false
IRS990/Form1098CFiledInd0false
IRS990/Form8282PropertyDisposedOfInd0false
IRS990/Form8899Filedind0false
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt01.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt11.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt21.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt31.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt41.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt51.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt61.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt71.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt81.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt91.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt101.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt111.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1240.00
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd0X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd1X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd2X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd3X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd4X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd5X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd6X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd7X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd8X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd9X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd10X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd11X
IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
IRS990/Form990PartVIISectionAGrp/OfficerInd2X
IRS990/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OfficerInd4X
IRS990/Form990PartVIISectionAGrp/OfficerInd5X
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt00
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt10
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt70
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt80
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt110
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt120
IRS990/Form990PartVIISectionAGrp/PersonNm0DARLENE ROYALTY
IRS990/Form990PartVIISectionAGrp/PersonNm1BARBARA WUEBBELS
IRS990/Form990PartVIISectionAGrp/PersonNm2DONNA FOGLE
IRS990/Form990PartVIISectionAGrp/PersonNm3BOB JENSEN
IRS990/Form990PartVIISectionAGrp/PersonNm4JOHN IRELAND
IRS990/Form990PartVIISectionAGrp/PersonNm5BROCK BENROTH
IRS990/Form990PartVIISectionAGrp/PersonNm6MIKE COLLINS
IRS990/Form990PartVIISectionAGrp/PersonNm7TONY FERRANDINO
IRS990/Form990PartVIISectionAGrp/PersonNm8KATE HALLER
IRS990/Form990PartVIISectionAGrp/PersonNm9BARBARA MCDONOUGH
IRS990/Form990PartVIISectionAGrp/PersonNm10TRENT LEWIS
IRS990/Form990PartVIISectionAGrp/PersonNm11DAVID PEARCE
IRS990/Form990PartVIISectionAGrp/PersonNm12MICHELLE CHURCHILL
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt1230086
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt120
IRS990/Form990PartVIISectionAGrp/TitleTxt0PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE PRESIDE
IRS990/Form990PartVIISectionAGrp/TitleTxt2SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt3TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt4SIB REPRESEN
IRS990/Form990PartVIISectionAGrp/TitleTxt5DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt6DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt7DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt8DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt9DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt11DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt12EXECUTIVE DI
IRS990/Form990ProvidedToGvrnBodyInd0true
IRS990/FormationYr01987
IRS990/FormerOfcrEmployeesListedInd0false
IRS990/FSAuditedInd0false
IRS990/FundraisingActivitiesInd0false
IRS990/GamingActivitiesInd0false
IRS990/GoverningBodyVotingMembersCnt012
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt050000
IRS990/GrantsToDomesticOrgsGrp/TotalAmt050000
IRS990/GrantsToIndividualsInd0false
IRS990/GrantsToOrganizationsInd0true
IRS990/GrantToRelatedPersonInd0false
IRS990/GrossReceiptsAmt01228607
IRS990/GroupReturnForAffiliatesInd0false
IRS990/IncludeFIN48FootnoteInd0false
IRS990/IndependentAuditFinclStmtInd0false
IRS990/IndependentVotingMemberCnt012
IRS990/IndoorTanningServicesInd0false
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIInd0X
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt0576
IRS990/InformationTechnologyGrp/TotalAmt0576
IRS990/InsuranceGrp/ManagementAndGeneralAmt04136
IRS990/InsuranceGrp/TotalAmt04136
IRS990/InterestGrp/ManagementAndGeneralAmt05
IRS990/InterestGrp/TotalAmt05
IRS990/InvestmentIncomeGrp/RelatedOrExemptFuncIncomeAmt023619
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt023619
IRS990/InvestmentInJointVentureInd0false
IRS990/InvestmentsPubTradedSecGrp/BOYAmt0323061
IRS990/InvestmentsPubTradedSecGrp/EOYAmt0465498
IRS990/IRPDocumentCnt04
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt031417
IRS990/LandBldgEquipBasisNetGrp/BOYAmt076958
IRS990/LandBldgEquipBasisNetGrp/EOYAmt065893
IRS990/LandBldgEquipCostOrOtherBssAmt097310
IRS990/LegalDomicileStateCd0OH
IRS990/LoanOutstandingInd0false
IRS990/LobbyingActivitiesInd0false
IRS990/LocalChaptersInd0true
IRS990/MaterialDiversionOrMisuseInd0false
IRS990/MembersOrStockholdersInd0false
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd0false
IRS990/MinutesOfGoverningBodyInd0true
IRS990/MissionDesc0OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE.
IRS990/MoreThan5000KToIndividualsInd0false
IRS990/MoreThan5000KToOrgInd0true
IRS990/NetAssetsOrFundBalancesBOYAmt0458657
IRS990/NetAssetsOrFundBalancesEOYAmt0949124
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0204524
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt0694991
IRS990/NoncashContributionsAmt05228
IRS990/NondeductibleContributionsInd0false
IRS990/OccupancyGrp/FundraisingAmt09350
IRS990/OccupancyGrp/ManagementAndGeneralAmt08767
IRS990/OccupancyGrp/ProgramServicesAmt021933
IRS990/OccupancyGrp/TotalAmt040050
IRS990/OfficeExpensesGrp/FundraisingAmt08330
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt07811
IRS990/OfficeExpensesGrp/ProgramServicesAmt019542
IRS990/OfficeExpensesGrp/TotalAmt035683
IRS990/OfficerMailingAddressInd0false
IRS990/OperateHospitalInd0false
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt05560
IRS990/OtherAssetsTotalGrp/EOYAmt05560
IRS990/OtherChangesInNetAssetsAmt0-20121
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt06735
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt06314
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt015799
IRS990/OtherEmployeeBenefitsGrp/TotalAmt028848
IRS990/OtherExpensesGrp/Desc0PROGRAM EXPENSES
IRS990/OtherExpensesGrp/Desc1FUNDRAISING EXPENSES
IRS990/OtherExpensesGrp/Desc2MISCELLANEOUS
IRS990/OtherExpensesGrp/Desc3BANK FEES
IRS990/OtherExpensesGrp/FundraisingAmt031108
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt099
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt17823
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt26196
IRS990/OtherExpensesGrp/ProgramServicesAmt091151
IRS990/OtherExpensesGrp/ProgramServicesAmt15018
IRS990/OtherExpensesGrp/TotalAmt091250
IRS990/OtherExpensesGrp/TotalAmt131108
IRS990/OtherExpensesGrp/TotalAmt212841
IRS990/OtherExpensesGrp/TotalAmt36196
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt048279
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt045268
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0113257
IRS990/OtherSalariesAndWagesGrp/TotalAmt0206804
IRS990/PartialLiquidationInd0false
IRS990/PayPremiumsPrsnlBnftCntrctInd0false
IRS990/PayrollTaxesGrp/FundraisingAmt04231
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt05844
IRS990/PayrollTaxesGrp/ProgramServicesAmt09991
IRS990/PayrollTaxesGrp/TotalAmt020066
IRS990/PoliciesReferenceChaptersInd0true
IRS990/PoliticalCampaignActyInd0false
IRS990/PrincipalOfficerNm0AMY FENTON PARKER
IRS990/ProfessionalFundraisingInd0false
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0PROGRAM SERVICE FEES
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt0236958
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt0236958
IRS990/ProgSrvcAccomActy2Grp/Desc0GRANTS WERE GIVEN FOR RESEARCH FOR A CURE FOR BATTEN DISEASE.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt095328
IRS990/ProgSrvcAccomActy2Grp/GrantAmt095328
IRS990/ProgSrvcAccomActy3Grp/Desc0CONFERENCES AND CONVENTIONS HELD FOR RESEARCH, DISCUSSIONS AND SUPPORT FOR A CURE FOR BATTEN DISEASE.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt052053
IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt0883058
IRS990/PYExcessBenefitTransInd0false
IRS990/PYInvestmentIncomeAmt047608
IRS990/PYOtherExpensesAmt0511249
IRS990/PYOtherRevenueAmt022945
IRS990/PYRevenuesLessExpensesAmt0204604
IRS990/PYSalariesCompEmpBnftPaidAmt0237758
IRS990/PYTotalExpensesAmt0749007
IRS990/PYTotalRevenueAmt0953611
IRS990/QuidProQuoContributionsInd0false
IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReconcilationRevenueExpnssAmt0510588
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0true
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt0236958
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt03370
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt03370
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0SALES 22,945
IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc0PART III, LINE 12
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt0968030
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt0883058
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt0967924
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt0834109
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0834676
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt04487797
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt023619
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt047608
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt0-13024
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt078
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt09107
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt067388
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearAmt0236958
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt0236958
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt023619
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt047608
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus2YearsAmt0-13024
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt078
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt09107
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt067388
IRS990ScheduleA/InvestmentIncomeCYPct00.01000
IRS990ScheduleA/InvestmentIncomePYPct00.01000
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus1YearAmt022945
IRS990ScheduleA/OtherIncome509Grp/TotalAmt022945
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.98050
IRS990ScheduleA/PublicSupportPY509Pct00.98170
IRS990ScheduleA/PublicSupportTotal509Amt04721385
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt03370
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt03370
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt01204988
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0883058
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0967924
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0834109
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0834676
IRS990ScheduleA/Total509Grp/TotalAmt04724755
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt01228607
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0953611
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt0954900
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0834187
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0843783
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt04815088
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/ScheduleBRequiredInd0true
IRS990ScheduleD/EquipmentGrp/BookValueAmt065893
IRS990ScheduleD/EquipmentGrp/DepreciationAmt031417
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt097310
IRS990ScheduleD/TotalBookValueLandBuildingsAmt065893
IRS990ScheduleF/BoycottCountriesInd0false
IRS990ScheduleF/ForeignCorpOwnershipInd0false
IRS990ScheduleF/ForeignPartnershipInd0false
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt045328
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt0WIRE TRANSFER
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0RESEARCH
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/ValuationMethodUsedDesc0CASH
IRS990ScheduleF/InterestInForeignTrustInd0false
IRS990ScheduleF/PassiveForeignInvestmestCoInd0false
IRS990ScheduleF/TotalOtherOrgCnt01
IRS990ScheduleF/TransferToForeignCorpInd0false
IRS990ScheduleI/GrantRecordsMaintainedInd0true
IRS990ScheduleI/RecipientTable/CashGrantAmt010000
IRS990ScheduleI/RecipientTable/CashGrantAmt140000
IRS990ScheduleI/RecipientTable/IRCSectionDesc0501C3
IRS990ScheduleI/RecipientTable/IRCSectionDesc1501C3
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0RESEARCH
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt1RESEARCH
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0WASHINGTON UNIVERSITY
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1UNIVERSITY OF NORTH CAROLINA
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine2Txt0AT CHAPEL HILL
IRS990ScheduleI/RecipientTable/RecipientEIN0430653611
IRS990ScheduleI/RecipientTable/RecipientEIN1566001393
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt01 BROOKINGS DRIVE
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt1103 SOUTH BUILDING CAMPUS

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.97$0.20$0.77$0.60$0.97$0.37
2023Detailed filing. Detailed filing data is available for this year.$1.20$0.08$1.12$0.75$0.95$0.21
2022Detailed filing. Detailed filing data is available for this year.$1.29$0.02$1.27$1.10$0.86$0.24
2021Detailed filing. Detailed filing data is available for this year.$1.21$0.05$1.16$0.88$0.67$0.21
2020Detailed filing. Detailed filing data is available for this year.$1.03$0.08$0.95$1.23$0.72$0.51
2019Summary only. Only limited summary data is available for this year.$0.82$0.36$0.46$0.95$0.75$0.20
2017Detailed filing. Detailed filing data is available for this year.$0.46$0.21$0.25$0.83$0.95$0.11
2016Detailed filing. Detailed filing data is available for this year.$0.66$0.32$0.34$0.81$1.05$0.24
2015Detailed filing. Detailed filing data is available for this year.$0.66$0.09$0.57$0.99$0.88$0.11
2014Detailed filing. Detailed filing data is available for this year.$0.73$0.25$0.48$0.63$0.84$0.21
2013Detailed filing. Detailed filing data is available for this year.$0.69$0.01$0.68$0.65$0.94$0.29
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.97$0.01$0.96$0.77
2011Summary only. Only limited summary data is available for this year.$1.17$0.01$1.17$0.65$0.56$0.08