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Stxbp1 Foundation

EIN 82-1439459 · Holly Springs, NC

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood89 out of 100GovernanceGood84 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$1.4 million
Spending
$1.3 million
Spent on programs
98%
Reserves
9.2 months of spending
Largest source of income
donations and private grants, 97%
Employees
0
Volunteers
30

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 89 out of 100. Higher than 65% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    28 of 35

    Spendable reserves would cover 9.2 months of spending.

  • Debt

    16 of 20

    It owes 22% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 11% of income.

  • Income trend

    15 of 15

    Income rose 93% on the year before.

  • Spending floor

    15 of 15

    97% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 84 out of 100. Higher than 30% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    8 of 8 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $403,841 spent. FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1
  2. $184,400 spent. HOSTED IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE
  3. $647,663 spent. SUPPORTED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTS

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since May 2017.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.