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.
Public Charity
BARDET BIEDL SYNDROME FOUNDATION
BARDET BIEDL SYNDROME FOUNDATION, of WEST CHESTER, PA, is a Public Charity tracked in Imperigo's IRS 990 database. The 2025 filing shows $397K in revenue, $167K in expenses, $609K in total assets. 7 publicly reported grants to this organization, totaling roughly $859K, appear in IRS filings.
EIN: 463343666
WEST CHESTER, PA
Health Support
NTEE: E60
Latest filing: 2025
Total Revenue$397K
Total Expenses$167K
Total Assets$609K
Grant Records7
Funding Total$859K
Filing Years2021–2025
Sample Grants Received
Human Services
$800,000
UNRESTRICTED
$11,301
UNRESTRICTED
$6,265
UNRESTRICTED
$6,660
Unrestricted
$5,196
Showing up to 5 of 7 total records — full history available with membership.
Officers & Directors
VICE PRESIDE
Alex Ogeka
BOARD MEMBER
Dave Pothier
TREASURER
Nathan Arnesen
BOARD MEMBER
Tara Klassen
PRESIDENT
Timothy Ogden
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $397K | $167K | $609K |
| 2024 | $130K | $167K | $379K |
| 2023 | $373K | $172K | $416K |
| 2021 | $75K | $46K | $226K |
Between 2021 and 2025, reported annual revenue grew from $75K to $397K (+431%), with total assets most recently reported at $609K.
Interactive year-over-year charts and full filing details available with membership.