1P36 Deletion Support & Awareness

Nonprofit profile at a glance

EIN
264411797
IRS 990-EZ coverage
2016–2024
Forms available
Form 990-EZ 2024, Form 990-N 2015
Location
Bend, OR, USA
Rating
88
Verdict
STRONG
Rating confidence
Moderate
Sector
Centers to Support the Independence of Specific Populations

Reported finances

Revenue
$50,273
Expenses
$62,045
Assets
$248,422

Source: IRS Form 990-EZ. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

3 people listed

Executive titles in this filing

  • Kenneth Shirtcliff (President)

People named in this filing

  • Kenneth Shirtcliff (President)
  • Karen Bess (Treasurer)
  • Jennifer Winiecki (Secretary)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990-EZ. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2024

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.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and revenue has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 100
  • Transparency & Controls: 82
  • Sustainability: 40
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 98.8%; rating input score 99

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
  • Major donor itemization: Limited

Sustainability

  • Operating margin: -23.4%; rating input score 21; 21st percentile among comparable filings
  • Total-asset coverage ratio: 4; rating input score 80; 80th percentile among comparable filings
  • Liabilities to assets ratio: Limited
  • Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings

Growth

  • Program expense growth: 8.4% per year; rating input score 100; 69th percentile among comparable filings
  • Revenue growth: -3.2% per year; rating input score 0; 39th percentile among comparable filings
  • Asset growth: 7% per year; rating input score 100; 64th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 98.8% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 2 filed program accomplishments · $61K in reported program spending
  • Leadership: top reported pay $0 · 3 people listed
  • Consistency: 7 of 7 current checks pass
  • Schedules: 2 filed schedules
  • Filing history: 8 filing years from 2016 to 2024
  • Contacts: How to reach this organization
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Sustainability: Operating margin scored 21/100.
  • High — Growth: Revenue growth scored 0/100.
  • Review — Sustainability: Officer compensation ratio scored 56/100.