Beyond Batten Disease Foundation
To eradicate juvenile batten disease by raising awareness and funds for research to find a treatment or cure.
Beyond Batten Disease Foundation at a glance
- Total assets
- $1,859,709
- -12.3% vs 2024
- Revenue (2025)
- $306,063
- -43.1% vs 2024
- Net investment income (2025)
- $37,250
- -47.8% vs 2024
- Expenses (2025)
- $892,974
- -20.0% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who Beyond Batten Disease Foundation funds
How this funder distributes its grants
Grant Size Distribution
1 grant across all recorded years
The most common grant size was under $50K: 1 grant of 1 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2022, annual grant giving ranged from $20K (2020) to $25K (2022). In 2022 it made 1 grant totaling $25K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Care Beyond Diagnosis Garner, NC | GRANT | $25,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $1,859,709 | $306,063 | $892,974 | — | — | $37,250 |
| 2024 | $2,121,193 | $538,315 | $1,116,750 | — | — | $71,386 |
| 2023 | $3,231,365 | $1,028,636 | $1,036,148 | — | — | $361,397 |
| 2022 | $3,581,583 | $1,219,815 | $1,220,690 | $25,000 | 1 | $5 |
| 2021 | $3,773,556 | $908,445 | $665,343 | — | — | $58 |
| 2020 | $3,864,609 | $2,176,365 | $1,834,553 | $20,000 | 1 | $3,471 |
| 2019 | $3,529,982 | $4,640,638 | $1,580,631 | — | — | $4,083 |
About Beyond Batten Disease Foundation
Based on IRS filings
Beyond Batten Disease Foundation is a public charity focused on Education, based in Austin, TX. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $1.9M in total assets. Net investment income was $37K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Beyond Batten Disease Foundation is led by Mary Beth Kiser, President, CEO & Secretary on every filing since 2019; none of the 10 officers listed in 2025 report compensation.
Officers on the 2025 filing
Mary Beth Kiser
President, CEO & Secretary
On filings since 2019
40 hrs/week
$160K (2019) → $0 (2025)
T. Craig Benson
Board Chair
On filings since 2019
20 hrs/week
No compensation reported
Caroline Goodner
Director
On filings since 2019
4 hrs/week
No compensation reported
Jeff Hunt
Director
On filings since 2019
4 hrs/week
No compensation reported
Sabrina Brown
Director
On filings since 2019
4 hrs/week
No compensation reported
Wayne Herndon
Director
On filings since 2019
4 hrs/week
No compensation reported
Will Murphy
Director
On filings since 2019
4 hrs/week
No compensation reported
Steven Silber MD
Director
On filings since 2021
4 hrs/week
No compensation reported
Jonathan Feifs
Director
New on the 2025 filing
4 hrs/week
No compensation reported
Mark Chandler
Director Emeritus
New on the 2025 filing
4 hrs/week
No compensation reported
Former officers (1)
- Former: Danielle Kerkovich (2019–2023) — Scientific Officer
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2023 IRS filing
The highest reported compensation on the 2023 filing was $8K, to Danielle Kerkovich (Scientific Officer).
Frequently asked questions about Beyond Batten Disease Foundation
How large is Beyond Batten Disease Foundation?
Beyond Batten Disease Foundation reported $1.9M in total assets on its 2025 IRS Form 990. Its revenue that year was $306K.
What is Beyond Batten Disease Foundation?
Beyond Batten Disease Foundation is a public charity focused on Education, based in Austin, TX. It holds $1.9M in total assets as of 2025.
Where does Beyond Batten Disease Foundation operate?
Beyond Batten Disease Foundation has awarded grants in North Carolina, Texas.
What is Beyond Batten Disease Foundation's EIN?
Beyond Batten Disease Foundation's EIN (Employer Identification Number) is 26-3223661. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(2)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS March 12, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 15, 2023)
Live grants for the work Beyond Batten Disease Foundation funds
Education Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Beyond Batten Disease Foundation's focus areas in our free grants database
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