Voluntary Health Associations & Medical Disciplines
Stxbp1 Foundation
HOLLY SPRINGS, NC
Total revenue
$1.4M
Total expenses
$1.3M
Net assets
$1.2M
Grants received
$654K
42 grants
EIN
821439459
Tax year
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.
Programs
2 programs
Hosted in person stxbp1 summit+ to update families on current research as well as provide additional resources to be used in everyday life
Supported a longitudinal multi site natural history study for patients
Financials
FY 2024
Revenue
Expenses
People
8 listed
CHARLENE SON RIGBY
PRESIDENT
—
20 hrs/wk
MELISSA HIOCO
DIRECTOR, COMMUNITY ENGAGEMENT
—
25 hrs/wk
JACQUELINE STEINBERG
VICE PRESIDENT & SCIENTIFI
—
10 hrs/wk
HEATHER JONES
TREASURER
—
10 hrs/wk
RUSS NOVY
DIRECTOR, MARKETING & BRAND
—
30 hrs/wk
CRISTINA BRENNAN
SECRETARY
—
5 hrs/wk
JARED BARNUM
DIRECTOR, TECHNOLOGY
—
10 hrs/wk
DANIELE GREINER
DIRECTOR, DEVELOPMENT
—
5 hrs/wk
Independent contractors
JAMES GOSS
SCIENTIFIC CONSULTING
Grants received
Showing 42 of 42
Funded by
$654K from 24 funders · 42 grants · 2018–2024
$169K · 2 grants · 2022–2023
$164K · 3 grants · 2021–2024
$150K · 6 grants · 2019–2024
$25K · 1 grant · 2023
$24K · 1 grant · 2023
$20K · 2 grants · 2023–2024
$20K · 2 grants · 2022–2023
$19K · 4 grants · 2020–2024