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Wiedemann-Steiner Syndrome Foundation

EIN 81-1260031 · Sacramento, CA

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

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong97 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE WIEDEMANN-STEINER SYNDROME FOUNDATION PROVIDES EDUCATION, FOSTERS COMMUNITY, AND STIMULATES RESEARCH TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY WSS.

Income
$280,420
Spending
$102,671
Spent on programs
76%
Reserves
Over 10 years of spending
Largest source of income
donations and private grants, 91%
Employees
0
Volunteers
30

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 81% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover more than ten years of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 63% of income.

  • Income trend

    15 of 15

    Income rose 2% on the year before.

  • Spending floor

    15 of 15

    76% of spending went to programs and raising each dollar of donations cost 1 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 97 out of 100. Higher than 86% of charities in its peer group (diseases, $250k to $1m).

  • 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

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a 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

    12 of 15

    Its accounts were reviewed or compiled by an independent accountant, but not audited.

  • 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, 2025, 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 (4)
  1. $77,721 spent. EXPANDED OUTREACH THROUGH ITS FAMILY VOLUNTEERS TO SERVE AS REGIONAL AMBASSADORS AND HOSTED SEVERAL IN-PERSON AND VIRTUAL ACTIVITIES TO RAISE AWARENESS OF WSS INCLUDING THE MONTHLY EXPERT VIRTUAL DISCUSSIONS TO EDUCATE THE WSS COMMUNITY, ANNUAL WSS QUADRATHALON, AND INTERNATIONAL WSS AWARENESS DAY.
  2. RAISED AWARENESS AND SUPPORT TO INITIATE MEDICAL RESEARCH ON THE WSS GENE BY APPROVING FUNDING FOR A NEW NATURAL HISTORY STUDY TO BUILD ON THE WORK DONE THROUGH TWO PRIOR GRANTS IN PROGRESSING OUR KNOWLEDGE OF THE GENE.
  3. LEVERAGED THE SCIENTIFIC ADVISORY BOARD IN RUNNING A PROCESS TO SOLICIT CELL LINE STUDY PROPOSAL,S AND AFTER EVALUATING, ULTIMATELY APPROVING FUNDING FOR THREE PROPOSALS TO PROCEED IN 2026.
  4. STARTED THE TRANSITION TO A NEW WEBSITE PLATFORM TO SUPPORT PROVIDING MORE RESOURCES, AS WELL AS ALLOW BETTER NETWORKING FOR THOSE AFFECTED BY WSS.

Source: Form 990 for the year ending December 31, 2025, 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 November 6, 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 2025.

    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 June 2016.

    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 November 4, 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.