Civic Intelligence

1P36 Deletion Support & Awareness

EIN 26-4411797 • 501(c)3 • Bend, OR

Profile

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.

906 NE Greenwood Ave Ste 1Bend, OR 97701

1p36dsa.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

Score unavailable

No value available

Liabilities-to-assets requires both liabilities and assets on the latest valid filing.

Source year 2024

Liabilities / Revenue

Score unavailable

No value available

Liabilities-to-revenue requires both liabilities and revenue on the latest valid filing.

Source year 2024

Net Margin

22nd percentile

-23%

Higher net margin than 22% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Top Officer Pay

81st percentile

$0

Higher top officer pay than 81% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

501(c)3 • <$500k nonprofits • Source year 2024

Asset Growth

46th percentile

-4.5%

Faster asset growth than 46% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Revenue Growth

33rd percentile

-21%

Faster revenue growth than 33% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / AssetsScore unavailable

Assets

Down

$248,422

Down $11,772 (-4.5%) from 2023

Liabilities

-

No earlier filing loaded for comparison.

Net Assets

Down

$248,422

Down $11,772 (-4.5%) from 2023

Operations
Liabilities / RevenueScore unavailableNet Margin22nd percentile

Revenue

Down

$50,273

Down $13,042 (-21%) from 2023

Expenses

Up

$62,045

Up $16,559 (+36%) from 2023

Net Income

Down

-$11,772

Down $29,601 (-166%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth46th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$300K$200K$100K$0Assets 2016: $137,396Net Assets 2016: $137,3962016Assets 2017: $154,184Net Assets 2017: $154,1842017Assets 2018: $186,779Net Assets 2018: $186,7792018Assets 2019: $209,364Net Assets 2019: $209,3642019Assets 2020: $257,637Net Assets 2020: $257,6372020Assets 2021: $288,493Net Assets 2021: $288,4932021Assets 2022: $242,365Liabilities 2022: $0Net Assets 2022: $242,3652022Assets 2023: $260,194Liabilities 2023: $0Net Assets 2023: $260,1942023Assets 2024: $248,422Net Assets 2024: $248,4222024

Highlighted filing

2024

Assets$248,422
Liabilities-
Net Assets$248,422
Open 2024 Filing

Operations Trend

Revenue Growth33rd percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$100K$50K$0-$50KRevenue 2016: $65,686Expenses 2016: $35,402Net Income 2016: $30,2842016Revenue 2017: $62,359Expenses 2017: $45,571Net Income 2017: $16,7882017Revenue 2018: $65,067Expenses 2018: $32,465Net Income 2018: $32,6022018Revenue 2019: $64,163Expenses 2019: $41,578Net Income 2019: $22,5852019Revenue 2020: $49,950Expenses 2020: $1,677Net Income 2020: $48,2732020Revenue 2021: $32,175Expenses 2021: $1,319Net Income 2021: $30,8562021Revenue 2022: $42,769Expenses 2022: $88,897Net Income 2022: -$46,1282022Revenue 2023: $63,315Expenses 2023: $45,486Net Income 2023: $17,8292023Revenue 2024: $50,273Expenses 2024: $62,045Net Income 2024: -$11,7722024

Highlighted filing

2024

Revenue$50,273
Expenses$62,045
Net Income-$11,772
Open 2024 Filing

Filings

Most recent year

2024 • Form 990EZDetailed filing. Detailed filing data is available for this year.

Open filing
Assets
$248,422
Liabilities
-
Net assets
$248,422
Revenue
$50,273
Expenses
$62,045
Net income
-$11,772
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$2.48$2.48$0.50$0.62$0.12
2023Detailed filing. Detailed filing data is available for this year.$2.60$0.00$2.60$0.63$0.45$0.18
2022Detailed filing. Detailed filing data is available for this year.$2.42$0.00$2.42$0.43$0.89$0.46
2021Detailed filing. Detailed filing data is available for this year.$2.88$2.88$0.32$0.01$0.31
2020Detailed filing. Detailed filing data is available for this year.$2.58$2.58$0.50$0.02$0.48
2019Detailed filing. Detailed filing data is available for this year.$2.09$2.09$0.64$0.42$0.23
2018Detailed filing. Detailed filing data is available for this year.$1.87$1.87$0.65$0.32$0.33
2017Detailed filing. Detailed filing data is available for this year.$1.54$1.54$0.62$0.46$0.17
2016Detailed filing. Detailed filing data is available for this year.$1.37$1.37$0.66$0.35$0.30
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 16, 2025
Return Version
2024v5.1
Gross Receipts
$59,477
Mission and Program 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. Each year we hold a conference that brings families, doctors and other speakers together to learn more about 1p36 Deletion Syndrome and learn how to help those impacted with the syndrome.

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.

Program Services

DescriptionGrantsExpenses
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.$0$60,419
Communications Outreach - this includes social media website maintenance and other costs required to connect to community$0$900
Compensation and Service Providers
Top Officer Pay81st percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Kenneth ShirtcliffPresidentPT$0--
Karen BessTreasurerPT$0--
Jennifer WinieckiSecretaryPT$0--
Filing and Contact Details

Filer

Filer Name
1p36 Deletion Support & Awareness
EIN
26-4411797
Address
906 NE Greenwood Ave Ste 1, Bend, OR 97701

Signing Officer

Name
Karen R Bess
Title
Treasurer
Phone
8455455131
Signed
2025-11-16
Supplemental Narrative

Additional Explanations

Part I, line 8

“| Other Revenues:, Amount:| Conference Revenue: Registration, $21624|”

Part I, line 16

“| Other Expenses:, Amount:| Overhead Office Expenses: Includes website yearly fees etc., $1089| Paypal Fees, $222| Conference Expenses: Including hotel hotel space meals speakers etc., $60712|”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0| Other Revenues:, Amount:| Conference Revenue: Registration, $21624|
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ReturnHeader/BuildTS02025-03-06 01:10:19Z
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ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0Treasurer
ReturnHeader/BusinessOfficerGrp/PhoneNum08455455131
ReturnHeader/BusinessOfficerGrp/SignatureDt02025-11-16
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt01P36 DELETION SUPPORT & AWARENESS
ReturnHeader/Filer/BusinessNameControlTxt01P36
ReturnHeader/Filer/EIN0264411797
ReturnHeader/Filer/ForeignPhoneNum08455455131
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ReturnHeader/Filer/USAddress/CityNm0Bend
ReturnHeader/Filer/USAddress/StateAbbreviationCd0OR
ReturnHeader/Filer/USAddress/ZIPCd097701
ReturnHeader/ReturnTs02025-11-15T19:31:42-05:00
ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02024-01-01
ReturnHeader/TaxPeriodEndDt02024-12-31
ReturnHeader/TaxYr02024

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