Civic Intelligence

The Cholangiocarcinoma Foundation

990 • Fiscal year 2016 • EIN 20-5776861

Jan 01, 2016 to Dec 31, 2016 • Filed on Sep 21, 2017

Organization Profilewww.cholangiocarcinoma.org
5526 West 13400 SouthHerriman, UT 84096

(801) 999-0455

Siviq Scores

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

Liabilities / Assets

68th percentile

0.17x

Higher debt load relative to assets than 68% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Liabilities / Revenue

59th percentile

0.07x

Higher debt load relative to revenue than 59% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Net Margin

34th percentile

-2.1%

Higher net margin than 34% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Top Officer Pay

81st percentile

$78,125

Higher top officer pay than 81% of similar nonprofits.

Top officer pay equals 8.6% of source-year revenue.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Asset Growth

21st percentile

-6.9%

Faster asset growth than 21% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2015 to 2016

Revenue Growth

59th percentile

7.5%

Faster revenue growth than 59% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2015 to 2016

Balance Sheet
Liabilities / Assets68th percentile

Assets

Down

$394,042

Down $29,180 (-6.9%) from 2015

Net Assets

Down

$328,006

Down $15,982 (-4.6%) from 2015

Liabilities

Down

$66,036

Down $13,198 (-17%) from 2015

Revenue And Expenses
Liabilities / Revenue59th percentileNet Margin34th percentile

Revenue

Up

$904,493

Up $63,039 (+7.5%) from 2015

Expenses

Up

$923,885

Up $145,905 (+19%) from 2015

Net Income

Down

-$19,392

Down $82,866 (-131%) from 2015

Historical Trend

Balance Sheet Trend

Asset Growth21st percentile

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

$6.0M$4.0M$2.0M$0Assets 2011: $185,664Liabilities 2011: $208Net Assets 2011: $185,4562011Assets 2012: $166,908Liabilities 2012: $374Net Assets 2012: $166,5342012Assets 2013: $254,097Liabilities 2013: $5,916Net Assets 2013: $248,1812013Assets 2014: $309,684Liabilities 2014: $29,170Net Assets 2014: $280,5142014Assets 2015: $423,222Liabilities 2015: $79,234Net Assets 2015: $343,9882015Assets 2016: $394,042Liabilities 2016: $66,036Net Assets 2016: $328,0062016Assets 2018: $699,116Liabilities 2018: $266,865Net Assets 2018: $432,2512018Assets 2019: $815,602Liabilities 2019: $105,904Net Assets 2019: $709,6982019Assets 2020: $1,219,709Liabilities 2020: $404,683Net Assets 2020: $815,0262020Assets 2021: $2,743,945Liabilities 2021: $306,380Net Assets 2021: $2,437,5652021Assets 2022: $4,018,118Liabilities 2022: $265,340Net Assets 2022: $3,752,7782022Assets 2023: $4,624,165Liabilities 2023: $993,414Net Assets 2023: $3,630,7512023Assets 2025: $5,767,836Liabilities 2025: $1,220,153Net Assets 2025: $4,547,6832025

Highlighted filing

2016

Assets$394,042
Liabilities$66,036
Net Assets$328,006
Open 2016 Filing

Operations Trend

Revenue Growth59th percentile

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

$8.0M$6.0M$4.0M$2.0M$0-$2.0MExpenses 2011: $130,3372011Expenses 2012: $268,7672012Revenue 2013: $326,189Expenses 2013: $244,542Net Income 2013: $81,6472013Revenue 2014: $561,179Expenses 2014: $528,845Net Income 2014: $32,3342014Revenue 2015: $841,454Expenses 2015: $777,980Net Income 2015: $63,4742015Revenue 2016: $904,493Expenses 2016: $923,885Net Income 2016: -$19,3922016Revenue 2018: $1,527,321Expenses 2018: $1,289,062Net Income 2018: $238,2592018Revenue 2019: $2,209,603Expenses 2019: $1,933,077Net Income 2019: $276,5262019Revenue 2020: $1,887,741Expenses 2020: $1,782,307Net Income 2020: $105,4342020Revenue 2021: $3,901,961Expenses 2021: $2,279,422Net Income 2021: $1,622,5392021Revenue 2022: $4,935,665Expenses 2022: $3,620,452Net Income 2022: $1,315,2132022Revenue 2023: $5,082,650Expenses 2023: $5,266,027Net Income 2023: -$183,3772023Revenue 2025: $7,130,406Expenses 2025: $7,195,778Net Income 2025: -$65,3722025

Highlighted filing

2016

Revenue$904,493
Expenses$923,885
Net Income-$19,392
Open 2016 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2016 to Dec 31, 2016
Signed
Sep 21, 2017
Return Version
2016v3.0
Gross Receipts
$905,185
Mission and Program Overview

Mission

The organization's mission is to find a cure and improve the quality of life for cholangiocarcinoma patients.

To find a cure and improve the quality of life for those affected by cholangiocarcinoma.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$268,788$255,517▼ $13,271
Pledges and Grants Receivable$20,000$70,000▲ $50,000
Savings and Temporary Cash Investments$127,704$53,253▼ $74,451
Land, Buildings, and Equipment, Net$5,974$6,047▲ $73
Inventories for Sale or Use-$4,478-
Prepaid Expenses and Deferred Charges$706$4,452▲ $3,746
Investments in Publicly Traded Securities-$295-
Accounts Receivable$50--
Total Assets$423,222$394,042▼ $29,180
Liabilities
Other Liabilities$51,523$61,282▲ $9,759
Accounts Payable and Accrued Expenses$27,711$4,754▼ $22,957
Total Liabilities$79,234$66,036▼ $13,198
Net Assets / Fund Balance
Unrestricted Net Assets$323,988$258,006▼ $65,982
Temporarily Rstr Net Assets$20,000$70,000▲ $50,000
Total Net Assets Fund Balance$343,988$328,006▼ $15,982
Total Liabilities and Net Assets / Fund Balance$423,222$394,042▼ $29,180

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$6,047$3,998$10,045
Compensation and Service Providers
Top Officer Pay81st percentile

Employees

NameTitleFull / Part TimeBaseTotal
Donna MayerExecutive DirectorFT$78,125$78,125
Stacie LindseyPresidentFT$29,400$29,400

Board Members and Trustees

NameTitle
Dawn LyonVice President
Bruce CoppockBoard Member
Jason ScottBoard Member
Sean TurbevilleBoard Member
Lawrence GoodfieldTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$839,403
Program Service Revenue
$64,300
Investment Income
$-575
Other Revenue
$1,365
All Other Contributions
$839,403
Change in Net Assets
$-19,392

Audited Revenue Reconciliation

Revenue per Audited Statements
$904,493
Revenue Not Reported on Form 990
$3,410
Total Revenue per Audited Statements
$907,903
Total Revenue per Form 990
$904,493
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$424,343
Salaries, Compensation, and Employee Benefits$270,132
Grants and Similar Amounts Paid$229,410
Total Fundraising Expense$89,822
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$229,410--$229,410
Other Salaries and Wages$67,068$34,269$41,413$142,750
Travel$121,392--$121,392
Current Officers, Directors, Trustees, and Key Employees$70,395$22,471$14,659$107,525
Fees for Services Management$79,386$840$17,186$97,412
Information Technology$43,198$17,852$5,202$66,252
Other Expenses$43,840$176-$44,016
Office Expenses$20,241$4,751$4,221$29,213
Payroll Taxes$10,906$4,502$4,449$19,857
Conferences and Meetings$17,686--$17,686
Fees for Services Legal-$14,145-$14,145
Occupancy$8,772$1,200-$9,972
Fees for Services Accounting-$7,631-$7,631
Advertising$1,471$735$1,471$3,677
Insurance-$2,578-$2,578
Depreciation Depletion$1,007$416$411$1,834
All Other Expenses-$518$810$1,328
Total Functional Expenses$714,772$119,291$89,822$923,885

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$923,885
Total Expenses per Audited Statements$923,885
Total Expenses per Form 990$923,885
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Massachusetts General HospitalBoston, MA501c3Research$100,000
Mayo ClinicRochester, MN501c3Research$75,798
Columbia UniversityNew York, NY501c3Research$50,000
H Lee Moffitt Cancer CenterTampa, FL501c3Research$10,000
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
No
Subject to proxy tax
No
Insider Transactions and Loans

Interested-Person Transactions

Interested PartyRelationshipDescriptionShared RevenueAmount
Rick PollockFormer Board MemberWebsite Maintenance Printing It ConsultantNo$37,538
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Credit Card Liability$39,029
Payroll Liabilities$22,253
Governance and Compliance

Governance Checklist

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

Governance Explanations

Officer directors etc family relationship Part VI line 2

“Our Advocacy Director has a son who is a board member.”

Form 990 governing body review Part VI line 11

“The Board reviewed Form 990 at a Board Meeting.”

Conflict of interest policy compliance Part VI line 12C

“Periodic reviews are conducted by the board to ensure there is no conflict of interest issues.”

CEO executive director top management comp Part VI line 15A

“Compensation of the President and other officers and key employees was discussed and evaluated and approved by the Board, These individuals were not not included in the discussion and vote of approval. The Board considered comparable wages paid by other entities to determine reasonableness of compensation. The discussion and approval of compensation was documented by the Board.”

Other officer or key employee compensation Part VI line 15B

“Compensation of other officers and key employees was discussed, evaluated and approved by the Board. These individuals were not included in the discussion and vote of approval. The Board considered comparable wages paid by other entities to determine reasonableness of compensation. The discussion and approval of compensation was documented by the Board.”

Governing documents etc available to public Part VI line 19

“The Foundation will provide any documents required to be available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
The Cholangiocarcinoma Foundation
EIN
20-5776861
Address
5526 WEST 13400 SOUTH, Herriman, UT 84096

Signing Officer

Name
Stacie Lindsey
Title
President
Phone
8019990455
Signed
2017-09-21
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Stacie Lindsey
Formed
2006
Legal Domicile
Ut
Voting Board Members
6
Independent Board Members
5
Employees
5
Volunteers
350

Preparer

Firm
Chet Nichols & Associates PLLC
Address
1585 W Gaylawood Circle, Salt Lake City, UT 84123
Preparer
Chet Nichols
Phone
8012622856
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IRS990/Desc0The Cholangiocarcinoma Foundation is committed to providing services to patients and their families affected by this devastating disease. Both patients and the professional community are educated through our Annual Conference, website and book, 100 Questions & Answers about Cholangiocarcinoma. The Foundation also provides disease education, emotional support and a multitude of resources through a discussion board, social media sites, and responses to daily calls and emails. Through initiatives such as the Patient Registry, Action Alerts, and the Biliary Information Card, patients and their caregivers are given the opportunity to participate in research efforts while being empowered to take part in their own healthcare. The Organization also partners with similar organizations to spread awareness about the challenges faced by the rare disease community.
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IRS990/ProgSrvcAccomActy2Grp/Desc0In 2016, the Cholangiocarcinoma Foundation awarded Research Fellowship Awards to four young investigators to raise awareness about cholangiocarcinoma and inspire innovative, quality research. In addition, a grant was awarded to the Mayo Clinic for the International Cholangiocarcinoma Research Network Biorepository (ICRN). The ICRN also hosted its first Industry Night event to parnter with pharmaceutical companies invested in cholangiocarcinoma research. The Delphi Panel was a partnership with PHAR to assemble a panel of experts to develop consensus on managing emergencies in patients with biliary stents or tubes. Their work resulted in a poster presentation at a major oncology conference and is currently undergoing review for publication in a peer-reviewed journal. The Organization continues to focus on collaborative research efforts with the medical, scientific, academic, communities, government and its non-profit partners.
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IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt2630 W 168th St PH 7 West
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt312902 Magnolia Drive
IRS990ScheduleI/RecipientTable/USAddress/CityNm0Rochester
IRS990ScheduleI/RecipientTable/USAddress/CityNm1Boston
IRS990ScheduleI/RecipientTable/USAddress/CityNm2New York
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IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0Grants are provided to researchers focused on Cholangiocarcinoma
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Document Assets

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Filings

Displayed year

2016 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$394,042
Liabilities
$66,036
Net assets
$328,006
Revenue
$904,493
Expenses
$923,885
Net income
-$19,392
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.77$1.22$4.55$7.13$7.20$0.07
2023Summary only. Only limited summary data is available for this year.$4.62$0.99$3.63$5.08$5.27$0.18
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.02$0.27$3.75$4.94$3.62$1.32
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.74$0.31$2.44$3.90$2.28$1.62
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.22$0.40$0.82$1.89$1.78$0.11
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.82$0.11$0.71$2.21$1.93$0.28
2018Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.70$0.27$0.43$1.53$1.29$0.24
2016Detailed filing. Detailed filing data is available for this year.$0.39$0.07$0.33$0.90$0.92$0.02
2015Detailed filing. Detailed filing data is available for this year.$0.42$0.08$0.34$0.84$0.78$0.06
2014Detailed filing. Detailed filing data is available for this year.$0.31$0.03$0.28$0.56$0.53$0.03
2013Detailed filing. Detailed filing data is available for this year.$0.25$0.01$0.25$0.33$0.24$0.08
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.17$0.00$0.17$0.27
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.19$0.00$0.19$0.13