Civic Intelligence

1P36 Deletion Support & Awareness

990EZ • Fiscal year 2024 • EIN 26-4411797

Jan 01, 2024 to Dec 31, 2024 • Filed on Nov 16, 2025

Organization Profile1p36dsa.org
906 NE Greenwood Ave Ste 1Bend, OR 97701

(845) 545-5131

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

Score unavailable

No value available

Liabilities-to-assets requires both liabilities and assets on this filing.

Source year 2024

Liabilities / Revenue

Score unavailable

No value available

Liabilities-to-revenue requires both liabilities and revenue on this filing.

Source year 2024

Net Margin

17th percentile

-23%

Higher net margin than 17% of similar nonprofits.

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

Top Officer Pay

79th percentile

$0

Higher top officer pay than 79% of similar nonprofits.

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

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

Asset Growth

39th percentile

-4.5%

Faster asset growth than 39% of similar nonprofits.

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

Revenue Growth

25th percentile

-21%

Faster revenue growth than 25% of similar nonprofits.

2024 filings • 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

Net Assets

Down

$248,422

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

Liabilities

-

No earlier filing loaded for comparison.

Revenue And Expenses
Liabilities / RevenueScore unavailableNet Margin17th 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

Historical Trend

Balance Sheet Trend

Asset Growth39th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$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 Growth25th percentile

Revenue, expenses, and net income across loaded years, with this 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
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 Pay79th 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|
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1| 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|
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Part I, line 8
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Part I, line 16
ReturnHeader/BuildTS02025-03-06 01:10:19Z
ReturnHeader/BusinessOfficerGrp/PersonNm0Karen R Bess
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
ReturnHeader/Filer/USAddress/AddressLine1Txt0906 NE Greenwood Ave Ste 1
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

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed 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
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