Nonprofit · EIN 82-1439459
STXBP1 FOUNDATION
Also known as STXBP1 DISORDERS
Tax-exempt · HOLLY SPRINGS, NC 27540
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $1,420,429 | $1,268,147 | $152,282 | $1,487,440 | $322,060 | $1,165,380 |
| December 31, 2023 | 990 | $735,527 | $1,323,859 | -$588,332 | $1,367,619 | $354,521 | $1,013,098 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $1,370,768
- Program service revenue
- $0
- Investment income
- $49,661
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $828,992
- Salaries, compensation and benefits (total)
- $0
- Professional fundraising fees
- $0
- Legal fees
- $240
- Accounting fees
- $10,687
- Program services (functional)
- $1,235,904
- Management and general (functional)
- $26,364
- Fundraising (functional)
- $5,879
Balance sheet and other
- Total assets, start of year
- $1,367,619
- Total assets, end of year
- $1,487,440
- Total liabilities, end of year
- $322,060
- Net assets, end of year
- $1,165,380
- Net assets without donor restrictions
- $974,422
- Net assets with donor restrictions
- $190,958
- Gross receipts
- $1,422,416
- Employees
- 0
- Volunteers
- 30
- Year formed
- 2017
- State of legal domicile
- PA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| CHARLENE SON RIGBY | PRESIDENT Trustee or director, Officer | 20 | $0 |
| MELISSA HIOCO | DIRECTOR, COMMUNITY ENGAGEMENT Trustee or director, Officer | 25 | $0 |
| JACQUELINE STEINBERG | VICE PRESIDENT & SCIENTIFI Trustee or director, Officer | 10 | $0 |
| HEATHER JONES | TREASURER Trustee or director, Officer | 10 | $0 |
| RUSS NOVY | DIRECTOR, MARKETING & BRAND Trustee or director, Officer | 30 | $0 |
| CRISTINA BRENNAN | SECRETARY Trustee or director, Officer | 5 | $0 |
| JARED BARNUM | DIRECTOR, TECHNOLOGY Trustee or director, Officer | 10 | $0 |
| DANIELE GREINER | DIRECTOR, DEVELOPMENT Trustee or director, Officer | 5 | $0 |
990 for the year ended December 31, 2023: 9 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| CHARLENE SON RIGBY | PRESIDENT Trustee or director, Officer | 30 | $0 |
| MELISSA HIOCO | DIRECTOR, DEVELOPMENT Trustee or director, Officer | 30 | $0 |
| JACQUELINE STEINBERG | VICE PRESIDENT & SCIENTIFI Trustee or director, Officer | 10 | $0 |
| HEATHER JONES | TREASURER Trustee or director, Officer | 15 | $0 |
| JENNIFER CLATTERBUCK | DIRECTOR, COMMUNITY ENGAGE Trustee or director, Officer | 5 | $0 |
| RUSS NOVY | DIRECTOR, MARKETING & BRAN Trustee or director, Officer | 5 | $0 |
| CRISTINA BRENNAN | SECRETARY Trustee or director, Officer | 5 | $0 |
| JARED BARNUM | DIRECTOR, TECHNOLOGY Trustee or director, Officer | 5 | $0 |
| DANIELE GREINER | DIRECTOR, DEVELOPMENT Trustee or director, Officer | 5 | $0 |
Address and contacts
- Address (IRS master file)
- PO BOX 1148, HOLLY SPRINGS, NC 27540-1148
- In care of
- % HEATHER JONES
- Mailing address (990-N for 2017)
- 2001 HAMILTON ST SUITE 917, Philadelphia PA 19130
- Principal officer (990 for 2024)
- CHARLENE SON RIGBY, PO BOX 1148, HOLLY SPRINGS, NC 27540
- Principal officer (990-N for 2017)
- Anne Johnson, 2001 Hamilton St Suite 917, Philadelphia PA 19130
- Signed the 990
- HEATHER JONES, TREASURER
- Phone
- (513) 720-6302
- Website
- stxdisorders.org
- Return prepared by
- RKL LLP
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.
Program accomplishments
- FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1Expenses $403,841 · grants $403,213
- HOSTED IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFEExpenses $184,400 · grants $7,310
- SUPPORTED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTSExpenses $647,663 · grants $418,469
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 82-1439459
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2017
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G20)
- Assets (IRS master file)
- $1,487,440
- Income (IRS master file)
- $1,422,416
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $1,420,429 | $1,268,147 | $1,487,440 | XML |
| 990 | December 2023 | $735,527 | $1,323,859 | $1,367,619 | XML |
| 990 | December 2022 | $1,830,890 | $509,216 | $1,701,392 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990-EZ | December 2019 | – | – | – | IRS |
| 990-N for 2017 Officer: Anne Johnson | December 31, 2017 | ≤ $50,000 receipts | – | – | e-Postcard |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 82-1439459).
Questions about STXBP1 FOUNDATION
- What is the EIN of STXBP1 FOUNDATION?
- The employer identification number (EIN) of STXBP1 FOUNDATION is 82-1439459.
- Is STXBP1 FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2017.
- Are donations to STXBP1 FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does STXBP1 FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of STXBP1 FOUNDATION due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did STXBP1 FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of STXBP1 FOUNDATION?
- The 990 for the year ended December 31, 2024 names CHARLENE SON RIGBY.
- Who are the officers and directors of STXBP1 FOUNDATION?
- The 990 for the year ended December 31, 2024 lists 8 people; 0 received compensation from the organization.
- How much revenue does STXBP1 FOUNDATION have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $1,420,429, expenses of $1,268,147 and total assets of $1,487,440 at year end.
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All nonprofits in HOLLY SPRINGS · North Carolina · Voluntary health associations and medical disciplines