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EIN 82-1439459

STXBP1 Foundation

IRS 501(c) type
501(c)(3)
Num. employees
0
City
Holly Springs
State
North Carolina
Year formed
2017
Most recent tax filings
2023-12-01
NTEE code, primary
G20: Birth Defects and Genetic Diseases
Description
The STXBP1 Foundation aims to create awareness about disorders related to STXBP1 mutations, fund and drive research for discovering a cure, provide families with tools to understand the disease and ways to get involved, advocate for improving early detection, and foster activism. It hosted an in-person STXBP1 summit+ to update families on current research and provide additional resources for everyday life. The foundation also supported multiple centers of excellence across the US to establish a standard of care and clinical expertise in their rare disease.
Also known as...
STXBP1 Disorders
Total revenues
$735,527
2023
Total expenses
$1,323,859
2023
Total assets
$1,367,619
2023
Num. employees
0
2023

Program areas at STXBP1 Foundation

Funded multiple preclinical grants to various organizations to further research around STXBP1
Launched a longitudinal multi site natural history study for patients.
Hosted in person STXBP1 summit+ to update families on current research as well as provide additional resources to be used in everyday life

Grants made by STXBP1 Foundation

GranteeGrant descriptionAmount
Children's Hospital Colorado Health SystemTo Fund Research$104,399
Baylor College of Medicine (BCM)To Fund Research$100,000
New York Hospital Weill Cornell Medical Center FundTo Fund Clinical Trial$82,500
...and 3 more grants made

Who funds STXBP1 Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
American Online Giving FoundationGeneral Support$45,750
James Family Charitable FoundationGeneral$25,000
Clara InspiredGeneral 501(c)(3) Purpose of the Organization$23,850
...and 9 more grants received

Personnel at STXBP1 Foundation

NameTitleCompensation
Jackie Steinberg, MPH, BSNVice President and Scientific Liaison
Anne JohnsonBoard Member
Jason StanalandDirector, Communications
Russ NovyDirector, Marketing and Brand$0
Jared BarnumDirector, Technology$0
...and 7 more key personnel

Financials for STXBP1 Foundation

RevenuesFYE 12/2023
Total grants, contributions, etc.$694,492
Program services$0
Investment income and dividends$41,035
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$735,527

Form 990s for STXBP1 Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-122024-10-10990View PDF
2022-122023-11-15990View PDF
2021-122022-11-15990View PDF
2020-122021-10-13990View PDF
2019-122020-09-30990EZView PDF
...and 1 more Form 990
Data update history
December 6, 2024
Posted financials
Added Form 990 for fiscal year 2023
October 23, 2024
Received grants
Identified 1 new grant, including a grant for $10,000 from Fargo-Moorhead Area Foundation Corporation
July 13, 2024
Received grants
Identified 4 new grant, including a grant for $45,750 from American Online Giving Foundation
February 29, 2024
Updated personnel
Identified 6 new personnel
January 6, 2024
Posted financials
Added Form 990 for fiscal year 2022
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchPartially liquidatedFundraising eventsPeer-to-peer fundraisingFundraising races, competitions, and tournamentsTax deductible donationsNo full-time employeesAccepts online donations
General information
Address
PO Box 1148
Holly Springs, NC 27540
Metro area
Raleigh-Cary, NC
County
Wake County, NC
Website URL
stxbp1disorders.org/ 
Phone
(513) 720-6302
IRS details
EIN
82-1439459
Fiscal year end
December
Taxreturn type
Form 990
Year formed
2017
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G20: Birth Defects and Genetic Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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