Beyond Batten Disease Foundation
Donations deductibleBeyond Batten Disease Foundation's network
9 people8 organisationsi9 people and 8 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (9). Violet dotted lines (8) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
9 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 8 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| T Craig Benson Chair | Board Chair | 2019 | 7 yrs |
| Caroline Goodner | Director | 2019 | 7 yrs |
| Jeff Hunt | Director | 2019 | 7 yrs |
| Jonathan Feifs | Director | 2025 | 1 yr |
| Mark Chandler | Director Emeritus | 2025 | 1 yr |
| Sabrina Brown | Director | 2019 | 7 yrs |
| Steven Silber MD | Director | 2021 | 5 yrs |
| Wayne Herndon | Director | 2019 | 7 yrs |
| Will Murphy | Director | 2019 | 7 yrs |
Under 5 years5 to 6 years6 years or more
Officers and senior leadership
2 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| Danielle Kerkovich | Scientific Officer | since 2019 |
| Mary Beth Kiser | President/CEO and Secretary | since 2019 |
Pay and hours
year to 30 June 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| T Craig Benson | Board Chair | 20 | $0 | ||
| Mary Beth Kiser | President/CEO and Secretary | 40 | $0 | ||
| Jeff Hunt | Director | 4 | $0 | ||
| Sabrina Brown | Director | 4 | $0 | ||
| Wayne Herndon | Director | 4 | $0 | ||
| Will Murphy | Director | 4 | $0 | ||
| Caroline Goodner | Director | 4 | $0 | ||
| Steven Silber MD | Director | 4 | $0 | ||
| Jonathan Feifs | Director | 4 | $0 | ||
| Mark Chandler | Director Emeritus | 4 | $0 |
No pay was reported for anyone in Part VII on this return.
Colorado roster
10 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20213012584). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.| Name | Title as filed |
|---|---|
| Sabrina Brown | Director |
| Jeff Hunt | Director |
| Patrick McClain | Treasurer |
| T. Craig Benson | Board Chair |
| Mary Beth Kiser | |
| Danielle M. Kerkovich | Scientific Officer |
| Mary Beth Kiser | President/CEO and Secretary |
| Will Murphy | Director |
| Caroline Goodner | Director |
| Wayne Herndon | Director |
About
- Legal name
- Beyond Batten Disease Foundation
- EIN
- 263223661
- Address
- 3305 Steck Ave, Austin, TX, 78757-8154
- State
- Texas
- Mission
- To eradicate juvenile batten disease by raising awareness and funds for research to find a treatment or cure. (as filed on the Form 990)
- Activity (NTEE)
- B90 Education
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Education
- Size band
- 6 (IRS master file code)
- Formed
- 2008
- Principal officer
- Mary Beth Kiser (as named on the Form 990)
- IRS ruling date
- 1 March 2009
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 6, latest 2025
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥7years on the filingsT Craig Benson
≥7years on the filingsCaroline Goodner
≥7years on the filingsJeff Hunt
≥7years on the filingsSabrina Brown
Latest return
year to 30 June 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 30 June 2025. US dollars, as filed.- Total assets
- $1.9m
- Total liabilities
- $182k
- Net assets or fund balances
- $1.7m
- Contributions and grants received
- $296k
- Program service revenue
- $0
- Employees
- 0
- Volunteers
- 50
State registration
1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.Beyond Batten Disease Foundation likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Texas Comptroller of Public Accounts, entity data (data.texas.gov 9cir-efmm). Licence not stated. Data last fetched 18 October 2026.
- State
- Texas
- Entity type
- nonprofit corporation
- Status
- Active
- Formed
- 22 August 2008
- Registered agent
- Not stated
This register does not publish officers or directors.