Civic Intelligence

Haystack Project Inc.

990 • Fiscal year 2021 • EIN 83-3367375

Jan 01, 2021 to Dec 31, 2021 • Filed on May 05, 2022

Organization ProfileWWW.HAYSTACKPROJECT.ORG
640 9th Street SWWashington, DC 20024

(202) 360-9985

Siviq Scores

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

Liabilities / Assets

56th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2021 filings • 501(c)3 • <$500k nonprofits • Source year 2021

Liabilities / Revenue

56th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

2021 filings • 501(c)3 • <$500k nonprofits • Source year 2021

Net Margin

69th percentile

25%

Higher net margin than 69% of similar nonprofits.

2021 filings • 501(c)3 • <$500k nonprofits • Source year 2021

Top Officer Pay

79th percentile

$3,000

Higher top officer pay than 79% of similar nonprofits.

Top officer pay equals 0.6% of source-year revenue.

2021 filings • 501(c)3 • <$500k nonprofits • Source year 2021

Asset Growth

85th percentile

70%

Faster asset growth than 85% of similar nonprofits.

2021 filings • 501(c)3 • <$500k nonprofits • Annualized from 2020 to 2021

Revenue Growth

64th percentile

23%

Faster revenue growth than 64% of similar nonprofits.

2021 filings • 501(c)3 • <$500k nonprofits • Annualized from 2020 to 2021

Balance Sheet
Liabilities / Assets56th percentile

Assets

Up

$287,269

Up $118,654 (+70%) from 2020

Net Assets

Up

$287,269

Up $118,654 (+70%) from 2020

Liabilities

Flat

$0

Flat from 2020

Revenue And Expenses
Liabilities / Revenue56th percentileNet Margin69th percentile

Revenue

Up

$482,707

Up $91,168 (+23%) from 2020

Expenses

Up

$364,053

Up $136,892 (+60%) from 2020

Net Income

Down

$118,654

Down $45,724 (-28%) from 2020

Historical Trend

Balance Sheet Trend

Asset Growth85th percentile

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

$600K$400K$200K$0Assets 2019: $4,237Liabilities 2019: $0Net Assets 2019: $4,2372019Assets 2020: $168,615Liabilities 2020: $0Net Assets 2020: $168,6152020Assets 2021: $287,269Liabilities 2021: $0Net Assets 2021: $287,2692021Assets 2022: $382,665Liabilities 2022: $0Net Assets 2022: $382,6652022Assets 2023: $174,973Liabilities 2023: $0Net Assets 2023: $174,9732023Assets 2024: $402,109Liabilities 2024: $0Net Assets 2024: $402,1092024

Highlighted filing

2021

Assets$287,269
Liabilities$0
Net Assets$287,269
Open 2021 Filing

Operations Trend

Revenue Growth64th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$1.0M$500K$0-$500KRevenue 2019: $94,730Expenses 2019: $90,493Net Income 2019: $4,2372019Revenue 2020: $391,539Expenses 2020: $227,161Net Income 2020: $164,3782020Revenue 2021: $482,707Expenses 2021: $364,053Net Income 2021: $118,6542021Revenue 2022: $476,038Expenses 2022: $380,641Net Income 2022: $95,3972022Revenue 2023: $226,966Expenses 2023: $434,658Net Income 2023: -$207,6922023Revenue 2024: $759,000Expenses 2024: $525,956Net Income 2024: $233,0442024

Highlighted filing

2021

Revenue$482,707
Expenses$364,053
Net Income$118,654
Open 2021 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2021 to Dec 31, 2021
Signed
May 5, 2022
Return Version
2021v4.0
Gross Receipts
$482,707
Mission and Program Overview

Mission

Haystack Project brings together stakeholders connected to rare and ultra rare medical conditions to educate them and assist them with their self advocacy efforts.

Haystack project brings together the stakeholders connected to rare and ultra rare conditions to educate them and assist with their self-advocacy efforts

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$168,615$287,269▲ $118,654
Rtn Earn Endowment Incm Other Fnds$168,615$287,269▲ $118,654
Total Assets$168,615$287,269▲ $118,654
Liabilities
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Total Net Assets Fund Balance$168,615$287,269▲ $118,654
Total Liabilities and Net Assets / Fund Balance$168,615$287,269▲ $118,654
Compensation and Service Providers
Top Officer Pay79th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Deanna DarlingtonCEOPT$3,000$3,000

Board Members and Trustees

NameTitle
Chevise TurnerBoard Member
Christina NyquistBoard Member
James CaroBoard Member
Lisa SheelmanBoard Member
Marc YaleBoard Member
Susan ThorntonBoard Member
Bela SastrySecretary
Joseph ChiricoTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
M Kay ScanlonConsulting1401 PORTER ST 418, Baltimore, MD 21230$142,960
Revenue and Support

Revenue Composition

Contributions and Grants
$482,707
Program Service Revenue
$0
Investment Income
$0
Other Revenue
$0
All Other Contributions
$478,580
Change in Net Assets
$118,654
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$360,803
Salaries, Compensation, and Employee Benefits$3,000
Grants and Similar Amounts Paid$250
Professional Fundraising Fees$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Management$90,000$20,745-$110,745
Fees for Services Lobbying$20,000--$20,000
Current Officers, Directors, Trustees, and Key Employees-$3,000-$3,000
Information Technology-$2,859-$2,859
Advertising$600$1,063-$1,663
Insurance-$1,600-$1,600
Other Expenses$223,265$371-$371
Fees for Services Accounting-$300-$300
Grants to Domestic Individuals$250--$250
Total Functional Expenses$334,115$29,938$0$364,053
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Page 6, Part VI, Line 11B

“Each member reviews and approves form 990 before filing.”

Form 990, Page 6, Part VI, Line 15A

“Approved by board of directors.”

Form 990, Page 6, Part VI, Line 19

“Form 990 available for public inspection.”

Filing and Contact Details

Filer

Filer Name
Haystack Project Inc
EIN
83-3367375
Phone
2023609985
Address
640 9TH STREET SW, WASHINGTON, DC 20024

Signing Officer

Name
James Caro
Title
Board Member
Phone
3013206872
Signed
2022-05-05
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Deanna Darlington
Formed
2019
Legal Domicile
Dc
Voting Board Members
9
Independent Board Members
9
Employees
0

Preparer

Firm
Yaakov Borenstein CPA Pc
Address
9505 LINDEN AVE, BETHESDA, MD 20814-1638
Preparer
Yaakov Borenstein CPA Pc
Phone
3015305870
Supplemental Narrative

Additional Explanations

FORM 990 - ORGANIZATION'S MISSION

“Haystack project brings together the stakeholders connected to rare and ultra rare conditions to educate and advocate for public policies that recognize the unique circumstances of extremely rare conditions, their diagnosis, treatment, and care.”

Form 990, Page 2, Part III, Line 4C

“Engage third party consultants to provide monthly and ad hoc calls with patients groups. Calls were focused on identifying issues related to systemic barriers to access to care and treatments. Consultants provided groups with guidance on the rules, regulations, and laws that impact patient care including proposals currently pending with policy makers. Consultants helped collect, collate and compartmentalize which patient experiences related back to which current and pending law, regulations and proposals. Patient groups were provided a forum from which they can learn from each other. As part of this effort, the organization has created the advocacy empowerment institute (aei). The end goal of aei is to better arm patients for the important role of self-advocacy. The organization has also created special member focused programs specifically tailored to address the needs and concerns of payors, minorities, and rare cancer patients. Consultants also research, moderate, and summarize a monthly speaker series.”

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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/ExplanationTxt0HAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE AND ADVOCATE FOR PUBLIC POLICIES THAT RECOGNIZE THE UNIQUE CIRCUMSTANCES OF EXTREMELY RARE CONDITIONS, THEIR DIAGNOSIS, TREATMENT, AND CARE.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1ENGAGE THIRD PARTY CONSULTANTS TO PROVIDE MONTHLY AND AD HOC CALLS WITH PATIENTS GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMIC BARRIERS TO ACCESS TO CARE AND TREATMENTS. CONSULTANTS PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENT CARE INCLUDING PROPOSALS CURRENTLY PENDING WITH POLICY MAKERS. CONSULTANTS HELPED COLLECT, COLLATE AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAW, REGULATIONS AND PROPOSALS. PATIENT GROUPS WERE PROVIDED A FORUM FROM WHICH THEY CAN LEARN FROM EACH OTHER. AS PART OF THIS EFFORT, THE ORGANIZATION HAS CREATED THE ADVOCACY EMPOWERMENT INSTITUTE (AEI). THE END GOAL OF AEI IS TO BETTER ARM PATIENTS FOR THE IMPORTANT ROLE OF SELF-ADVOCACY. THE ORGANIZATION HAS ALSO CREATED SPECIAL MEMBER FOCUSED PROGRAMS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF PAYORS, MINORITIES, AND RARE CANCER PATIENTS. CONSULTANTS ALSO RESEARCH, MODERATE, AND SUMMARIZE A MONTHLY SPEAKER SERIES.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2EACH MEMBER REVIEWS AND APPROVES FORM 990 BEFORE FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3APPROVED BY BOARD OF DIRECTORS.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4FORM 990 AVAILABLE FOR PUBLIC INSPECTION.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990 - ORGANIZATION'S MISSION
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PAGE 2, PART III, LINE 4C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PAGE 6, PART VI, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PAGE 6, PART VI, LINE 15A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PAGE 6, PART VI, LINE 19
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ReturnHeader/BuildTS02022-09-23 18:48:47Z
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ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0BOARD MEMBER
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ReturnHeader/PreparerPersonGrp/PhoneNum03015305870
ReturnHeader/PreparerPersonGrp/PreparationDt02022-05-05
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ReturnHeader/ReturnTs02022-05-05T11:05:37-05:00
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ReturnHeader/TaxPeriodBeginDt02021-01-01
ReturnHeader/TaxPeriodEndDt02021-12-31
ReturnHeader/TaxYr02021

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2021 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$287,269
Liabilities
$0
Net assets
$287,269
Revenue
$482,707
Expenses
$364,053
Net income
$118,654
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.02$0.00$4.02$7.59$5.26$2.33
2023Detailed filing. Detailed filing data is available for this year.$1.75$0.00$1.75$2.27$4.35$2.08
2022Detailed filing. Detailed filing data is available for this year.$3.83$0.00$3.83$4.76$3.81$0.95
2021Detailed filing. Detailed filing data is available for this year.$2.87$0.00$2.87$4.83$3.64$1.19
2020Detailed filing. Detailed filing data is available for this year.$1.69$0.00$1.69$3.92$2.27$1.64
2019Summary only. Only limited summary data is available for this year.$0.04$0.00$0.04$0.95$0.90$0.04