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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$966K
-19.7% YoY
Revenue
$602K
-19.3% YoY
Net Investment Income
$36K
+66.2% YoY
Expenses
$967K
+1.6% YoY
About Batten Disease Support
Based on IRS filings
Batten Disease Support is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in GAHANNA, OH. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $966K in total assets. Net investment income was $36K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $965,863 | $1,203,251 | $1,291,125 |
| Revenue | $601,964 | $746,147 | $1,099,485 |
| Expenses | $967,326 | $952,036 | $858,302 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $35,709 | $21,491 | $19,641 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 0 recipients in 2024
Grant Size Distribution
3 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for 2024.
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| AMY FENTON PARKER | PRESIDENT & | 40 | $100,000 |
| DARLENE ROYALTY | BOARD CHAIR | 1 | — |
| BARBARA WUEBBELS | BOARD VICE C | 1 | — |
| BARBARA MCDONOUGH | SECRETARY | 1 | — |
| FRED SURREY | TREASURER | 1 | — |
| JOHN IRELAND | DIRECTOR | 1 | — |
| WAYNE KIEFER | DIRECTOR | 1 | — |
| KATE HALLER | DIRECTOR | 1 | — |
| DAVE PEARCE | DIRECTOR | 1 | — |
| SUZETTE JAMES | DIRECTOR | 1 | — |
| FERNANDA LEAL-PARDINAS | DIRECTOR | 1 | — |
| ANTHONY FERRANDINO | DIRECTOR | 1 | — |
| DONNA FOGEL | DIRECTOR | 1 | — |
| JOHN PATTERSON | DIRECTOR | 1 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Batten Disease Support?
Batten Disease Support is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in GAHANNA, OH. It holds $966K in total assets as of 2024.
How large is Batten Disease Support?
As of 2024, Batten Disease Support holds $966K in total assets with $602K in annual revenue.
Where does Batten Disease Support operate?
Batten Disease Support has awarded grants in Missouri, North Carolina, New York.
What is Batten Disease Support's EIN?
Batten Disease Support's EIN (Employer Identification Number) is 91-1397792. IRS Form 990 filing data is available on this page for 2020–2024.
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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