Bardet Biedl Syndrome Foundation
Donations deductibleBardet Biedl Syndrome Foundation's network
5 peoplei5 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (5). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.The board
5 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.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 5 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 |
|---|---|---|---|
| Alex Ogeka | Vice Preside | 2021 | 5 yrs |
| Dave Pothier | Board Member | 2024 | 2 yrs |
| Nathan Arnesen | Treasurer | 2021 | 5 yrs |
| Tara Klassen | Board Member | 2024 | 2 yrs |
| Timothy Ogden | President | 2021 | 5 yrs |
Under 5 years5 to 6 years6 years or more
Pay and hours
year to 31 July 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 |
|---|---|---|---|---|---|
| Timothy Ogden | President | 5 | $0 | ||
| Alex Ogeka | Vice Preside | 1 | $0 | ||
| Nathan Arnesen | Treasurer | 1 | $0 | ||
| Dave Pothier | Board Member | 1 | $0 | ||
| Tara Klassen | Board Member | 1 | $0 |
No pay was reported for anyone in Part VII on this return.
About
- Legal name
- Bardet Biedl Syndrome Foundation
- EIN
- 463343666
- Address
- 403 Oermead Ln, West Chester, PA, 19380-1952
- State
- Pennsylvania
- Mission
- The organization's mission is to build a community of support for individuals and families, provide information about bardet biedl syndrome, and promote science and research to improve the lives of individuals with bardet biedl syndrome. (as filed on the Form 990)
- Activity (NTEE)
- E60 Health care
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Health Care
- Size band
- 5 (IRS master file code)
- Formed
- 2014
- Principal officer
- Timothy Ogden (as named on the Form 990)
- IRS ruling date
- 1 September 2014
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 4, latest 2025
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥5years on the filingsAlex Ogeka
≥5years on the filingsNathan Arnesen
≥5years on the filingsTimothy Ogden
≥2years on the filingsDave Pothier
Latest return
year to 31 July 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 July 2025. US dollars, as filed.- Total assets
- $609k
- Total liabilities
- $673
- Net assets or fund balances
- $608k
- Contributions and grants received
- $397k
- Program service revenue
- $0
- Grants and similar paid out
- $77k
- Employees
- 0
- Volunteers
- 10
Grants paid
1 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| Marshfield Clinic Health System | Medical research | $77k |