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Nonprofiteer
← BARDET BIEDL SYNDROME FOUNDATION

Form 990 for tax year 2024

Filed by BARDET BIEDL SYNDROME FOUNDATION.

Totals

Total revenue
$396,830
Total expenses
$167,052
Contributions and grants received
$396,828
Grants paid
$77,375
Program service revenue
$0
Investment income
$2
Other revenue
$0
Total assets, end of year
$609,072
Total liabilities, end of year
$673
Net assets or fund balances, end of year
$608,399
Program services expenses (Part IX)
$108,909
Management and general expenses
$56,092
Fundraising expenses
$2,051
Program service expenses (Part III)
$108,909

Program services were 65.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $6,463

  • 1f · All other contributions, gifts and grants

    $390,365

  • 3 · Investment income

    total $2 · excluded $2

  • 8a · Fundraising events: gross income

    $12,070

  • 8a · Fundraising events: contributions included on line 1c

    $6,463

  • 8b · Fundraising events: direct expenses

    $12,070

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $77,375 · program services $77,375

  • 11c · Fees: accounting

    total $4,551 · management and general $4,551

  • 11g · Fees: other

    total $46,951 · program services $14,331 · management and general $32,611 · fundraising $9

  • 12 · Advertising and promotion

    total $971 · program services $685 · management and general $276 · fundraising $10

  • 13 · Office expenses

    total $125 · management and general $125

  • 14 · Information technology

    total $3,343 · program services $2,241 · management and general $1,069 · fundraising $33

  • 17 · Travel

    total $12,671 · management and general $12,671

  • 19 · Conferences, conventions and meetings

    total $12,805 · program services $12,805

  • 24a · Other expenses: BANK AND MERCHANT FEES

    total $3,556 · management and general $1,812 · fundraising $1,744

  • 24b · Other expenses: FOOD AND BEVERAGE

    total $3,383 · program services $1,472 · management and general $1,911

  • 24c · Other expenses: SUPPLIES

    total $972 · management and general $972

  • 24d · Other expenses: MISCELLANEOUS

    total $255 · fundraising $255

  • 24e · All other expenses

    total $94 · management and general $94

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $376,121 · end of year $609,072

  • 3 · Pledges and grants receivable

    beginning of year $2,500

  • 17 · Accounts payable and accrued expenses

    end of year $673

  • 27 · Net assets without donor restrictions

    beginning of year $378,621 · end of year $608,399

Mission and programs · 2024

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.

  • RESEARCH THE ORGANIZATION PROVIDED RESEARCH GRANTS TO SUPPORT THE CRIBBS REGISTRY. ORGANIZATION LEADERSHIP ATTENDED SCIENTIFIC CONFERENCES TO ADVANCE RESEARCH EFFORTS RELEVANT TO THE COMMUNITY INCLUDING EMBO CILIA IN OCTOBER 2024 AND THE CHAN ZUCKERBERG INITIATIVE RARE AS ONE SUMMIT IN MAY 2025. PRESIDENT TIM OGDEN CO-AUTHORED A PEER REVIEWED PUBLICATION ON EFFECTIVE COLLABORATION BETWEEN PATIENT GROUPS AND RESEARCHERS.

    Expenses $79,365 · Grants $77,375

  • COMMUNITY SUPPORT THE ORGANIZATION CONNECTED FAMILIES AND SHARED INFORMATION ON RESEARCH, THERAPIES, AND CARE FOR BARDET BIEDL SYNDROME. THIS INCLUDED HOSTING A CONFERENCE FOR APPROXIMATELY 200 PEOPLE IN JULY 2024, AND A SERIES OF WEBINARS AND LOCAL MEETINGS FOR MEMBERS AND THE GENERAL PUBLIC.

    Expenses $29,544

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Timothy Ogden

    PRESIDENT

    Total calculated
    $0
    Hours/week
    5

  • Alex Ogeka

    VICE PRESIDE

    Total calculated
    $0
    Hours/week
    1

  • Nathan Arnesen

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Dave Pothier

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Tara Klassen

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.

Grants on this return

Provenance

Return type
form_990
Tax year
2024
Filed
15 June 2026
IRS schema version
2024v5.0
Source object
202631669349302358

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