Batten Disease Support & Research Association
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.
Key facts about Batten Disease Support & Research Association
In short: Batten Disease Support & Research Association gave $136K across 8 grants in 2024 (avg $17K), top state New York. Source: 2024 IRS Form 990.
- EIN
- 91-1397792
- Latest 990 filing
- Form 990, 2024
- Annual giving (2024)
- $135,863
- Grants made (2024)
- 8
- Average grant
- $16,983
- Median grant
- $19,086
- Total assets
- $965,863
- Primary geography
- New York (22% of itemized 2024 grant dollars)
Data from IRS Form 990, 2024; updated September 2026.
Financial Overview
From 2024 IRS Form 990 · View filing
Total Assets
$966K
-19.7% YoY
Annual Giving
$136K
+161.3% YoY
Grant Count
8
+700.0% YoY
Avg Grant Size
$17K
-67.3% YoY
How Batten Disease Support & Research Association gives
- Giving grew 1259% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
About Batten Disease Support & Research Association
Based on IRS filings
Batten Disease Support & Research Association is a public charity 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. In 2024, it awarded 8 grants totaling $136K. Net investment income was $36K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 8 itemized grants.
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $10K (2021) to $136K (2024). In 2024 it made 8 grants totaling $136K.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 8 recipients in 2024
The largest 2024 recipient was University of Coloradodenver ($24K). Together the top 8 received $136K.
Grant Size Distribution
13 grants across all recorded years
The most common grant size was under $50K: 12 grants of 13 (92%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Coloradodenver Aurora, CO | Research | $23,796 |
| Nationwide Children's Hospital Columbus, OH | Research | $23,411 |
| Choc Children's Research Institute Orange, CA | Research | $19,636 |
| Kenney Krieger Institute Baltimore, MD | Research | $19,539 |
| University of Rochester Medical Center Rochester, NY | Research | $18,633 |
| Rush University Medical Center Chicago, IL | Research | $12,544 |
| NYU Grossman School of Medicine New York, NY | Research | $11,304 |
| University of North Carolina at Chapel Hill Chapel Hill, NC | Research | $7,000 |
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 |
| Net Investment Income | $35,709 | $21,491 | $19,641 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS September 16, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS May 16, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS August 30, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 22, 2025)
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Officers and directors from IRS filings
Batten Disease Support & Research Association is led by Amy Fenton Parker, President on every filing since 2021; 1 of 14 officers listed in 2024 is compensated.
Officers on the 2024 filing
Amy Fenton Parker
President
On filings since 2021
40 hrs/week
$93K (2021) → $100K (2024)
Darlene Royalty
Board Chair
President → Board Chair, 2021
On filings since 2020
1 hr/week
No compensation reported
John Ireland
Director
Director → Sibling Representative, 2023
Sibling Representative → Director, 2024
On filings since 2020
1 hr/week
No compensation reported
Kate Haller
Director
On filings since 2020
1 hr/week
No compensation reported
John Patterson
Director
On filings since 2022
1 hr/week
No compensation reported
Fernanda Leal-Pardinas
Director
On filings since 2023
1 hr/week
No compensation reported
Suzette James
Director
On filings since 2023
1 hr/week
No compensation reported
Wayne Kiefer
Director
On filings since 2023
1 hr/week
No compensation reported
Anthony Ferrandino
Director
New on the 2024 filing
1 hr/week
No compensation reported
Dave Pearce
Director
New on the 2024 filing
1 hr/week
No compensation reported
Donna Fogel
Director
New on the 2024 filing
1 hr/week
No compensation reported
Barbara McDonough
Secretary
Director → Secretary, 2023
On filings since 2020
1 hr/week
No compensation reported
Barbara Wuebbels
Board Vice C
Vice President → Board Vice C, 2021
On filings since 2020
1 hr/week
No compensation reported
Fred Surrey
Treasurer
Director → Treasurer, 2022
On filings since 2021
1 hr/week
No compensation reported
Former officers (10)
- Former: David Pearce (2020–2023) — Director
- Former: Donna Fogle (2020–2023) — Director
- Former: Tony Ferrandino (2020–2023) — Director
- Former: Kyleen Douglas (2023) — Director
- Former: Trent Lewis (2020–2022) — Director
- Former: Rene Martinez (2021–2022) — Director
- Former: Bob Jensen (2020–2021) — Treasurer
- Former: Brock Benroth (2020–2021) — Director
- Former: Michelle Churchill (2020) — Executive Di
- Former: Mike Collins (2020) — Director
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $100K, to Amy Fenton Parker (President &).
Frequently asked questions about Batten Disease Support & Research Association
How much does Batten Disease Support & Research Association give each year?
Batten Disease Support & Research Association gave $136K across 8 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $52K across 1 grant.
What is Batten Disease Support & Research Association's typical grant size?
Batten Disease Support & Research Association's median grant in 2024 was $19,086, and its average grant was $16,983, across 8 grants on its 2024 IRS Form 990.
Where does Batten Disease Support & Research Association give grants?
Batten Disease Support & Research Association's top state is New York, with 22% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Colorado (18%) and Ohio (17%).
Does Batten Disease Support & Research Association give general operating support?
Not in 2024: none of the 8 grants with a stated purpose on Batten Disease Support & Research Association's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Research" (8 grants).
Who are Batten Disease Support & Research Association's largest grantees?
Batten Disease Support & Research Association's largest 2024 grantees include University of Coloradodenver ($23,796), Nationwide Children's Hospital ($23,411) and Choc Children's Research Institute ($19,636), according to its 2024 IRS Form 990. Together they received 49% of its itemized 2024 grant dollars.
How large is Batten Disease Support & Research Association?
Batten Disease Support & Research Association reported $966K in total assets on its 2024 IRS Form 990. Its revenue that year was $602K.
What is Batten Disease Support & Research Association?
Batten Disease Support & Research Association is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Gahanna, OH. It holds $966K in total assets as of 2024.
What is Batten Disease Support & Research Association's EIN?
Batten Disease Support & Research Association's EIN (Employer Identification Number) is 91-1397792. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Here's the math on researching Batten Disease Support & Research Association by hand.
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