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Nonprofiteer
← STXBP1 FOUNDATION

Form 990 for tax year 2022

Filed by STXBP1 FOUNDATION.

Totals

Total revenue
$1,830,890
Total expenses
$509,216
Contributions and grants received
$1,830,890
Grants paid
$130,333
Program service revenue
$0
Investment income
$0
Other revenue
$0
Total assets, end of year
$1,701,392
Total liabilities, end of year
$99,962
Net assets or fund balances, end of year
$1,601,430
Program services expenses (Part IX)
$255,784
Management and general expenses
$22,758
Fundraising expenses
$230,674
Program service expenses (Part III)
$255,784

Program services were 50.2% 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

    $200,847

  • 1f · All other contributions, gifts and grants

    $1,630,043

  • 1g · Noncash contributions included above

    $962,000

  • 8a · Fundraising events: gross income

    $0

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

    $200,847

  • 8b · Fundraising events: direct expenses

    $0

  • 8c · Net income from fundraising events

    total $0

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $130,333 · program services $130,333

  • 11b · Fees: legal

    total $970 · management and general $970

  • 11c · Fees: accounting

    total $8,424 · management and general $8,424

  • 11g · Fees: other

    total $190,417 · program services $15,600 · fundraising $174,817

  • 12 · Advertising and promotion

    total $11,948 · management and general $69 · fundraising $11,879

  • 13 · Office expenses

    total $243 · program services $157 · management and general $86

  • 14 · Information technology

    total $4,040 · management and general $4,040

  • 19 · Conferences, conventions and meetings

    total $143,415 · program services $109,694 · management and general $7,254 · fundraising $26,467

  • 24a · Other expenses: BANK FEES

    total $14,573 · fundraising $14,573

  • 24b · Other expenses: PROFESSIONAL ORGANIZATI

    total $1,915 · management and general $1,915

  • 24c · Other expenses: MISCELLANEOUS

    total $1,704 · fundraising $1,704

  • 24d · Other expenses: GENERAL FUNDRAISER

    total $773 · fundraising $773

  • 24e · All other expenses

    total $461 · fundraising $461

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $484,808 · end of year $1,648,170

  • 4 · Accounts receivable

    beginning of year $18,897 · end of year $44,232

  • 9 · Prepaid expenses and deferred charges

    beginning of year $3,438 · end of year $8,990

  • 17 · Accounts payable and accrued expenses

    beginning of year $98,322 · end of year $99,962

  • 18 · Grants payable

    beginning of year $129,065

  • 27 · Net assets without donor restrictions

    beginning of year $279,256 · end of year $1,601,430

  • 28 · Net assets with donor restrictions

    beginning of year $500 · end of year $0

Mission and programs · 2022

Mission

TO CREATE AWARENESS IN THE DISORDERS ASSOCIATED WITH STXBP1 MUTATIONS. FUND AND DRIVE RESEARCH DISCOVERY OF A CURE. PROVIDE FAMILIES WITH TOOLS TO HELP THEM UNDERSTAND THE DISEASE & HOW TO GET INVOLVED. ADVOCATE TO IMPROVE EARLY DETECTION. FOSTER ACTIVISM TO HELP CHANGE POLICIES IN FAVOR OF ORPHANED DISEASES. IMPROVE THE LIVES OF OUR STXBP1 FAMILIES.

  • FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1

    Expenses $130,490 · Grants $130,333

  • HOSTED IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE

    Expenses $109,694

  • SUPPORTED MULTIPLE CENTERS OF EXCELLENCE ACROSS THE US TO ESTABLISH A STANDARD OF CARE AND CLINICAL EXPERTISE IN OUR RARE DISEASE.

    Expenses $15,600

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • CHARLENE SON RIGBY

    PRESIDENT

    Total calculated
    $0
    Hours/week
    30

  • MELISSA HIOCO

    DIRECTOR, DEVELOPMENT

    Total calculated
    $0
    Hours/week
    30

  • JACQUELINE STEINBERG

    VICE PRESIDENT & SCIENTIFI

    Total calculated
    $0
    Hours/week
    10

  • HEATHER JONES

    TREASURER

    Total calculated
    $0
    Hours/week
    15

  • JENNIFER CLATTERBUCK

    DIRECTOR, COMMUNITY ENGAGE

    Total calculated
    $0
    Hours/week
    5

  • RUSS NOVY

    DIRECTOR, MARKETING & BRAN

    Total calculated
    $0
    Hours/week
    5

  • CRISTINA BRENNAN

    SECRETARY

    Total calculated
    $0
    Hours/week
    5

  • JARED BARNUM

    DIRECTOR, TECHNOLOGY

    Total calculated
    $0
    Hours/week
    5

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
2022
Filed
15 November 2023
IRS schema version
2022v5.0
Source object
202343199349313459

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