Public Charity

STXBP1 FOUNDATION

Based in HOLLY SPRINGS, NC, STXBP1 FOUNDATION operates as a Public Charity. The organization reported $1.4M in revenue, $1.3M in expenses, $1.5M in total assets for fiscal year 2024. Imperigo tracks 29 reported grant relationships connected to this organization totaling approximately $756K.

EIN: 821439459 HOLLY SPRINGS, NC Birth Defects & Genetic Diseases NTEE: G20 Latest filing: 2024
Total Revenue$1.4M
Total Expenses$1.3M
Total Assets$1.5M
Grant Records29
Funding Total$756K
Filing Years2019–2024

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.

Where $100 goes at Stxbp1 Foundation

How Stxbp1 Foundation divides every $100 it spends, from its own Form 990 filings, averaged across 5 years.

$88 Programs the work itself
$4 Management running the organization
$8 Fundraising raising the next dollar

Inside the $88 for programs

$46
Supported a longitudinal multi site natural history study for patients
52% of program spending
$29
Funded multiple preclinical grants to various organizations to further research around stxbp1
33% of program spending
$13
Hosted in person stxbp1 summit+ to update families on current research as well as provide additional resources to be used in everyday life
15% of program spending
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Source: Form 990 filings with the IRS, latest fiscal year 2024. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

PRESIDENT Charlene Son Rigby
SECRETARY Cristina Brennan
DIRECTOR, DEVELOPMENT Daniele Greiner
TREASURER Heather Jones
VICE PRESIDENT & SCIENTIFI Jacqueline Steinberg
DIRECTOR, TECHNOLOGY Jared Barnum

Officer compensation and complete director data available with membership.

Top Grant Purposes

General Support
$691,973 23 grants
Health & Medicine
$33,350 2 grants
Research & Policy
$7,500 1 grant
Unspecified
$23,426 2 grants

Financial Trends

Year Revenue Expenses Assets
2024 $1.4M $1.3M $1.5M
2023 $736K $1.3M $1.4M
2022 $1.8M $509K $1.7M
2020 $297K $12K $318K
2019 $106K $131K $34K

Between 2019 and 2024, reported annual revenue grew from $106K to $1.4M (+1240%), with total assets most recently reported at $1.5M.

Interactive year-over-year charts and full filing details available with membership.

See the full picture for STXBP1 FOUNDATION

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