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Passes our checks

1p36 Deletion Support & Awareness

EIN 26-4411797 · Bend, OR

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

LegitimacyPassesRegistration and standingFinancial healthNot ratedToo small or too little detailGovernanceNot ratedThe short tax form does not cover thisImpact evidenceDescribes programsHow well its results are evidenced

What it says it does

Our mission is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical community.

Income
$50,273
Spending
$62,045
Reserves
48 months of spending
Largest source of income
other income, 52%

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

Financial health

We do not score finances when yearly spending is very small or the return has too little detail. The ratios stop meaning much at that size.

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

Governance

This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.

Source: Form 990EZ 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 (2)
  1. $60,419 spent. The 2023 Annual Conference. This is a conference for caregivers doctors and the rapists to come together to discuss and learn about 1p36 Deletion Syndrome. On average 250-350 attend the 3 days event. Each year it is at a different location in the US to ensure new people can attend the event. This year it was in Colorado.
  2. $900 spent. Communications Outreach - this includes social media website maintenance and other costs required to connect to community

Source: Form 990EZ 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 November 2009.

    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.