Batten Disease Support
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
Total Assets
$966K
-19.7% YoY
Annual Giving
—
Grant Count
0
Avg Grant Size
—
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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 .
Who else does Batten Disease Support fund?
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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 | — |
Geographic Focus
Where this funder has awarded grants
Grant Distribution by State
Cities
Data last updated March 2026. Sourced from IRS Form 990-PF filings.
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