Civic Intelligence

Batten Disease Support

EIN 91-1397792 • 501(c)3 • Gahanna, OH

Profile

Batten disease support & research association's mission is to be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as batten disease.

PO Box 30049Gahanna, OH 43230

n/A

Siviq Scores

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

Liabilities / Assets

75th percentile

0.20x

Higher debt load relative to assets than 75% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Liabilities / Revenue

83rd percentile

0.33x

Higher debt load relative to revenue than 83% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Net Margin

6th percentile

-61%

Higher net margin than 6% of similar nonprofits.

501(c)3 • $500k-$1M 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

13th percentile

-20%

Faster asset growth than 13% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Revenue Growth

17th percentile

-19%

Faster revenue growth than 17% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Assets

Down

$965,863

Down $237,388 (-20%) from 2023

Liabilities

Up

$197,874

Up $114,891 (+138%) from 2023

Net Assets

Down

$767,989

Down $352,279 (-31%) from 2023

Revenue

Down

$601,964

Down $144,183 (-19%) from 2023

Expenses

Up

$967,326

Up $15,290 (+1.6%) from 2023

Net Income

Down

-$365,362

Down $159,473 (-77%) from 2023

Trend Graphs

Balance Sheet Trend

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

$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

2024

Assets$965,863
Liabilities$197,874
Net Assets$767,989

Operations Trend

Revenue, expenses, and net income by year, with the latest 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

2024

Revenue$601,964
Expenses$967,326
Net Income-$365,362

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
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Sep 11, 2025
Return Version
2024v5.0
Gross Receipts
$601,964
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$668,380$570,630▼ $97,750
Cash and Non-Interest-Bearing Accounts$445,787$366,862▼ $78,925
Accounts Receivable$43,630--
Land, Buildings, and Equipment, Net$34,362$22,739▼ $11,623
Prepaid Expenses and Deferred Charges$4,282$4,282→ $0
Total Assets$1,203,251$965,863▼ $237,388
Other Assets Total$6,810$1,350▼ $5,460
Liabilities
Accounts Payable and Accrued Expenses$26,983$167,874▲ $140,891
Grants Payable$56,000$30,000▼ $26,000
Total Liabilities$82,983$197,874▲ $114,891
Net Assets / Fund Balance
Net Assets With Donor Restrictions$123,047$676,584▲ $553,537
Net Assets Without Donor Restrictions$997,221$91,405▼ $905,816
Total Net Assets Fund Balance$1,120,268$767,989▼ $352,279
Total Liabilities and Net Assets / Fund Balance$1,203,251$965,863▼ $237,388

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$22,739$77,775$100,514
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Amy Fenton ParkerPresident &FT$100,000$100,000

Board Members and Trustees

NameTitle
Darlene RoyaltyBoard Chair
Barbara WuebbelsBoard Vice C
Anthony FerrandinoDirector
Dave PearceDirector
Donna FogelDirector
Fernanda Leal-pardinasDirector
John IrelandDirector
John PattersonDirector
Kate HallerDirector
Suzette JamesDirector
Wayne KieferDirector
Barbara McdonoughSecretary
Fred SurreyTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$566,255
Program Service Revenue
$0
Investment Income
$35,709
Other Revenue
$0
All Other Contributions
$566,255
Change in Net Assets
$-365,362
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$461,851
Salaries, Compensation, and Employee Benefits$369,612
Grants and Similar Amounts Paid$135,863
Total Fundraising Expense$79,600
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$143,789$62,504$24,536$230,829
Grants to Domestic Orgs$135,863--$135,863
Current Officers, Directors, Trustees, and Key Employees$63,500$24,500$12,000$100,000
Fees for Services Other$81,518$1,775$8,202$91,495
Information Technology$46,359$15,475$3,866$65,700
Office Expenses$25,040$10,608$12,783$48,431
Travel$35,235$1,784$906$37,925
Fees for Services Accounting$1,422$31,804$3,364$36,590
Occupancy$6,903$11,635$3,938$22,476
Payroll Taxes$11,498$6,722$2,930$21,150
Other Employee Benefits$9,652$5,595$2,386$17,633
Insurance$3,512$4,482$4,549$12,543
Depreciation Depletion-$11,623-$11,623
Other Expenses$2,535$100$26$2,661
Conferences and Meetings$2,255--$2,255
Fees for Service Investment Mgmnt Fees-$1,924-$1,924
All Other Expenses$221$110-$331
Total Functional Expenses$685,086$202,640$79,600$967,326
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of ColoradodenverAurora, CO501c3Research$23,796
NATIONWIDE CHILDREN'S HOSPITALColumbus, OH501c3Research$23,411
CHOC CHILDREN'S RESEARCH INSTITUTEOrange, CA501c3Research$19,636
Kenney Krieger InstituteBaltimore, MD501c3Research$19,539
University of RochesterRochester, NY501c3Research$18,633
Rush University Medical CenterChicago, IL501c3Research$12,544
Nyu Grossman School of MedicineNew York, NY501c3Research$11,304
University of North CarolinaChapel Hill, NC501c3Research$7,000
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 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 17

Louisiana, maine, maryland, massachusetts, michigan, minnesota, mississippi, missouri, nevada, new hampshire, new jersey, new mexico, new york, north carolina, north dakota, ohio, oklahoma, oregon, pennsylvania, rhode island, south carolina, tennessee, texas, virginia, washington, west virginia, wisconsin

Form 990, Page 6, Part VI, Line 19

Record requests are individually reviewed and approved by the board. Form 990's are made available upon request and also on organization website, bdsrafoundation.org

Filing and Contact Details

Filer

Filer Name
Batten Disease Support
EIN
91-1397792
Phone
8004484570
Address
PO BOX 30049, GAHANNA, OH 43230

Signing Officer

Name
Amy Fenton Parker
Title
President & CEO
Phone
8004484570
Signed
2025-09-11

Organization Details

Principal Officer
Amy Fenton Parker
Formed
1987
Legal Domicile
Oh
Voting Board Members
13
Independent Board Members
13
Employees
5
Volunteers
40

Preparer

Firm
Wells CPA LLC
Address
215 N FRONT ST STE 110, COLUMBUS, OH 43215
Preparer
Donald Wells
Phone
6143968974
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IRS990/IndependentVotingMemberCnt013
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IRS990/InsuranceGrp/FundraisingAmt04549
IRS990/InsuranceGrp/ManagementAndGeneralAmt04482
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IRS990/MembersOrStockholdersInd0false
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd0true
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IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt021337
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt013346
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IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus4YearsAmt03370
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IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0SALES 21,919
IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc0PART III, LINE 12
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IRS990ScheduleD/TotalBookValueLandBuildingsAmt022739
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IRS990ScheduleI/RecipientTable/CashGrantAmt07000
IRS990ScheduleI/RecipientTable/CashGrantAmt118633
IRS990ScheduleI/RecipientTable/CashGrantAmt219636
IRS990ScheduleI/RecipientTable/CashGrantAmt311304

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