Civic Intelligence

The Familial Hypercholesterolemia Foundation DBA the Fh Foundation

990 • Fiscal year 2019 • EIN 45-4597425

Jan 01, 2019 to Dec 31, 2019 • Filed on Aug 28, 2020

Organization Profilewww.thefhfoundation.org

View Organization Page

680 E Colorado Blvd No 180Pasadena, CA 91101

(626) 583-4674

Siviq Scores

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

Liabilities / Assets

46th percentile

0.06x

Higher debt load relative to assets than 46% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Liabilities / Revenue

44th percentile

0.06x

Higher debt load relative to revenue than 44% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Net Margin

7th percentile

-45%

Higher net margin than 7% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Top Officer Pay

95th percentile

$338,365

Higher top officer pay than 95% of similar nonprofits.

Top officer pay equals 9.8% of source-year revenue.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Asset Growth

3rd percentile

-32%

Faster asset growth than 3% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2018 to 2019

Revenue Growth

65th percentile

12%

Faster revenue growth than 65% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2018 to 2019

Balance Sheet
Liabilities / Assets46th percentile

Assets

Down

$3,585,638

Down $1,699,216 (-32%) from 2018

Net Assets

Down

$3,366,224

Down $1,455,277 (-30%) from 2018

Liabilities

Down

$219,414

Down $243,939 (-53%) from 2018

Revenue And Expenses
Liabilities / Revenue44th percentileNet Margin7th percentile

Revenue

Up

$3,459,476

Up $360,664 (+12%) from 2018

Expenses

Down

$5,012,467

Down $673,319 (-12%) from 2018

Net Income

Up

-$1,552,991

Up $1,033,983 (+40%) from 2018

Historical Trend

Balance Sheet Trend

Asset Growth3rd percentile

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

$8.0M$6.0M$4.0M$2.0M$0Assets 2012: $444,503Liabilities 2012: $0Net Assets 2012: $444,5032012Assets 2013: $366,923Liabilities 2013: $5,346Net Assets 2013: $361,5772013Assets 2014: $3,582,214Liabilities 2014: $31,226Net Assets 2014: $3,550,9882014Assets 2015: $4,836,419Liabilities 2015: $117,776Net Assets 2015: $4,718,6432015Assets 2016: $6,970,129Liabilities 2016: $179,265Net Assets 2016: $6,790,8642016Assets 2017: $7,642,582Liabilities 2017: $180,835Net Assets 2017: $7,461,7472017Assets 2018: $5,284,854Liabilities 2018: $463,353Net Assets 2018: $4,821,5012018Assets 2019: $3,585,638Liabilities 2019: $219,414Net Assets 2019: $3,366,2242019Assets 2020: $4,371,270Liabilities 2020: $307,977Net Assets 2020: $4,063,2932020Assets 2021: $6,401,928Liabilities 2021: $384,859Net Assets 2021: $6,017,0692021Assets 2022: $4,488,377Liabilities 2022: $554,614Net Assets 2022: $3,933,7632022Assets 2023: $5,313,676Liabilities 2023: $1,133,524Net Assets 2023: $4,180,1522023Assets 2024: $7,350,370Liabilities 2024: $2,079,880Net Assets 2024: $5,270,4902024

Highlighted filing

2019

Assets$3,585,638
Liabilities$219,414
Net Assets$3,366,224
Open 2019 Filing

Operations Trend

Revenue Growth65th percentile

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

$10M$5.0M$0-$5.0MExpenses 2012: $138,3382012Revenue 2013: $762,377Expenses 2013: $845,303Net Income 2013: -$82,9262013Revenue 2014: $3,099,878Expenses 2014: $1,448,127Net Income 2014: $1,651,7512014Revenue 2015: $4,349,570Expenses 2015: $3,181,915Net Income 2015: $1,167,6552015Revenue 2016: $6,162,693Expenses 2016: $4,090,472Net Income 2016: $2,072,2212016Revenue 2017: $5,690,012Expenses 2017: $5,037,196Net Income 2017: $652,8162017Revenue 2018: $3,098,812Expenses 2018: $5,685,786Net Income 2018: -$2,586,9742018Revenue 2019: $3,459,476Expenses 2019: $5,012,467Net Income 2019: -$1,552,9912019Revenue 2020: $3,755,847Expenses 2020: $3,120,676Net Income 2020: $635,1712020Revenue 2021: $4,759,952Expenses 2021: $2,857,007Net Income 2021: $1,902,9452021Revenue 2022: $2,813,780Expenses 2022: $4,729,443Net Income 2022: -$1,915,6632022Revenue 2023: $6,535,608Expenses 2023: $6,362,500Net Income 2023: $173,1082023Revenue 2024: $8,891,212Expenses 2024: $7,841,100Net Income 2024: $1,050,1122024

Highlighted filing

2019

Revenue$3,459,476
Expenses$5,012,467
Net Income-$1,552,991
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2019 to Dec 31, 2019
Signed
Aug 28, 2020
Return Version
2019v5.1
Gross Receipts
$3,508,495
Mission and Program Overview

Mission

The Familial Hypercholesterolemia Foundation ("The FH Foundation") was incorporated February 17, 2012 as a California nonprofit corporation. The FH Foundation is a patient-centered nonprofit dedicated to education, advocacy, and research of familial hypercholesterolemia (FH). Our mission is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia and Lipoprotein(a). Through research, advocacy, and education we play a critical role in driving change, and empower families to navigate their own health.

The FH Foundation is a patient-centered nonprofit organization dedicated to research,

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$2,321,018$1,622,629▼ $698,389
Cash and Non-Interest-Bearing Accounts$387,359$927,955▲ $540,596
Investments in Publicly Traded Securities$750,313$795,629▲ $45,316
Pledges and Grants Receivable$1,742,500$178,715▼ $1,563,785
Accounts Receivable$54,449$0▼ $54,449
Prepaid Expenses and Deferred Charges$3,884$27,819▲ $23,935
Land, Buildings, and Equipment, Net$19,554$27,114▲ $7,560
Total Assets$5,284,854$3,585,638▼ $1,699,216
Other Assets Total$5,777$5,777→ $0
Liabilities
Accounts Payable and Accrued Expenses$456,413$219,414▼ $236,999
Deferred Revenue$6,940$0▼ $6,940
Total Liabilities$463,353$219,414▼ $243,939
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$2,920,652$2,412,570▼ $508,082
Net Assets With Donor Restrictions$1,900,849$953,654▼ $947,195
Total Net Assets Fund Balance$4,821,501$3,366,224▼ $1,455,277
Total Liabilities and Net Assets / Fund Balance$5,284,854$3,585,638▼ $1,699,216

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$24,852$20,197$45,049
Leasehold Improvements$2,262$10,234$12,496
Compensation and Service Providers
Top Officer Pay95th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Katherine WilemonCEO/Board MemberFT$265,529$72,836$338,365
A SheldonVP of MarketingFT$161,136$14,973$176,109
Catherine AhmedVP of PolicyFT$149,478$7,000$156,478
S Gidding MDCMedO (Term end Dec.)FT$113,716$39,698$153,414
E FennellDevelopment DirectorFT$109,654$6,772$116,426

Board Members and Trustees

NameTitle
William NealChair
Stacey LaneChair Elect
Allison JamisonBoard Member
Barry BrooksBoard Member
Dan RaderBoard Member
Joshua KnowlesBoard Member
Maria SophoclesBoard Member
Mary McGowanInterim Treasurer (Term start May)
Michael ShapiroSecretary
Seth BaumTreasurer (Term end May)

Highest Paid Contractors

ContractorServicesLocationCompensation
AtomoConsulting1603 Falcon Ledge Dr, Austin, TX 78746$710,468
DcriData ManagementPO Box 602651, Charlotte, NC 28260$581,950
Zilker Technology LLCWebsite and S.E.O.200 East 6th Street Ste 201, Austin, TX 78701$145,200
Emory Conference Center HotelSummit 2019 Venue1615 Clifton Rd, Atlanta, GA 30329$113,514
McAllister and Quinn LLCWashington D.C. Advocates1030 15th St NW Suite 590W, Washington, DC 20005$104,300
Revenue and Support

Revenue Composition

Contributions and Grants
$1,848,898
Program Service Revenue
$1,569,593
Investment Income
$32,742
Other Revenue
$8,243
All Other Contributions
$1,848,898
Change in Net Assets
$-1,552,991

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,459,476
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$97,714
Total Revenue per Audited Statements
$3,557,190
Total Revenue per Form 990
$3,459,476
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$3,138,794
Salaries, Compensation, and Employee Benefits$1,873,673
Total Fundraising Expense$393,097
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$1,130,241$90,722$124,586$1,345,549
Fees for Services Other$100,438$96,599$168,734$365,771
Current Officers, Directors, Trustees, and Key Employees$321,447$16,918-$338,365
Advertising$257,632$1,266$11,603$270,501
Travel$162,259$86,997$8,263$257,519
Payroll Taxes$89,011$11,604$10,928$111,543
Office Expenses$58,211$29,323$14,573$102,107
Other Employee Benefits$60,845$8,696$8,675$78,216
Occupancy$57,168$8,871$6,387$72,426
Fees for Services Legal$13,019$10,919$18,059$41,997
Conferences and Meetings$10,841$10,517$761$22,119
Fees for Services Accounting$5,692$4,774$7,896$18,362
Depreciation Depletion$8,301$1,106$1,660$11,067
Information Technology$2,722$2,283$3,776$8,781
Insurance$4,028$539$807$5,374
Other Expenses$45,620$4,449$728$4,449
All Other Expenses$434$324-$758
Total Functional Expenses$4,230,180$389,190$393,097$5,012,467

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$5,012,467
Total Expenses per Audited Statements$5,012,467
Total Expenses per Form 990$5,012,467
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
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
Audit committee
Yes
Backup withholding compliance
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, Part VI, Section B, line 11B

“The Form 990 is e-mailed to each member and reviewed via electronic media prior to filing.”

Form 990, Part VI, Section B, line 12C

“Conflicts of interest are monitored annually and reviewed by the governing body prior to approval or determination of action.”

Form 990, Part VI, Section B, line 15A

“The CEO's salary is reviewed on an annual basis by the Board of Directors and then approved by the Executive Committee. Part VI, line 15(b) was answered "no" as there were no other officers or key employees as defined in Form 990 instructions who received compensation.”

Form 990, Part VI, Section C, line 19

“All documents are available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
The Familial Hypercholesterolemia
EIN
45-4597425
Phone
6265834674
Address
680 E Colorado Blvd No 180, Pasadena, CA 91101
Doing Business As
FH Foundation

Signing Officer

Name
Katherine Wilemon
Title
CEO
Phone
6265834674
Signed
2020-08-28
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Katherine Wilemon
Formed
2012
Legal Domicile
CA
Voting Board Members
10
Independent Board Members
9
Employees
16
Volunteers
9

Preparer

Firm
Harrington Group CPAs LLP
Address
234 East Colorado Blvd Suite M150, Pasadena, CA 91101
Preparer
Tonetta L Conner
Phone
6264036801
Supplemental Narrative

Additional Explanations

Form 990, Part I, line 1, Description of Organization MIssion:

“advocacy, and education of familial hypercholesterolemia (FH). Our mission is to raise awareness of FH in order to increase the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds. The FH Foundation is the result of the team effort of patients and healthcare practitioners who have joined their knowledge and passion for helping others in changing the status quo for FH. We are honored to have key FH opinion leaders, both from the U.S. and international arena, sharing their expertise and research insight with The FH Foundation. Our success is rooted in collaboration, innovation, and commitment. With the help of a dedicated group of physicians and nurse practitioners, professional organizations, governmental representatives, and volunteers, The FH Foundation takes pride in its forward-thinking and versatile approach to making a real change in the world of FH. Programs and Initiatives are: CASCADE FH Registry FIND FH FH Global Summit FH Awareness Day FH Patient Speakers Bureau Grand Rounds & Family Forum HoFH Community”

Financial Statement Notes

Part X, Line 2:

“The FH Foundation is exempt from taxation under Internal Revenue Code Section 501(c)(3) and California Revenue and Taxation Code Section 23701d. Generally accepted accounting principles provide accounting and disclosure guidance about positions taken by an organization in its tax returns that might be uncertain. Management has considered its tax positions and believes that all of the positions taken by The FH Foundation in its federal and state exempt organization tax returns are more likely than not to be sustained upon examination. The FH Foundation's returns are subject to examination by federal and state taxing authorities, generally for three and four years, respectively, after they are filed.”

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IRS990/Form990PartVIISectionAGrp/PersonNm0William Neal
IRS990/Form990PartVIISectionAGrp/PersonNm1Stacey Lane
IRS990/Form990PartVIISectionAGrp/PersonNm2Michael Shapiro
IRS990/Form990PartVIISectionAGrp/PersonNm3Seth Baum
IRS990/Form990PartVIISectionAGrp/PersonNm4Mary McGowan
IRS990/Form990PartVIISectionAGrp/PersonNm5Katherine Wilemon
IRS990/Form990PartVIISectionAGrp/PersonNm6Barry Brooks
IRS990/Form990PartVIISectionAGrp/PersonNm7Joshua Knowles
IRS990/Form990PartVIISectionAGrp/PersonNm8Dan Rader
IRS990/Form990PartVIISectionAGrp/PersonNm9Maria Sophocles
IRS990/Form990PartVIISectionAGrp/PersonNm10Allison Jamison
IRS990/Form990PartVIISectionAGrp/PersonNm11A Sheldon
IRS990/Form990PartVIISectionAGrp/PersonNm12Catherine Ahmed
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IRS990/Form990PartVIISectionAGrp/PersonNm14E Fennell
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IRS990/Form990PartVIISectionAGrp/TitleTxt0Chair
IRS990/Form990PartVIISectionAGrp/TitleTxt1Chair Elect
IRS990/Form990PartVIISectionAGrp/TitleTxt2Secretary
IRS990/Form990PartVIISectionAGrp/TitleTxt3Treasurer (Term end May)
IRS990/Form990PartVIISectionAGrp/TitleTxt4Interim Treasurer (Term start May)
IRS990/Form990PartVIISectionAGrp/TitleTxt5CEO/Board Member
IRS990/Form990PartVIISectionAGrp/TitleTxt6Board Member
IRS990/Form990PartVIISectionAGrp/TitleTxt7Board Member
IRS990/Form990PartVIISectionAGrp/TitleTxt8Board Member
IRS990/Form990PartVIISectionAGrp/TitleTxt9Board Member
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IRS990/Form990PartVIISectionAGrp/TitleTxt11VP of Marketing
IRS990/Form990PartVIISectionAGrp/TitleTxt12VP of Policy
IRS990/Form990PartVIISectionAGrp/TitleTxt13CMedO (Term end Dec.)
IRS990/Form990PartVIISectionAGrp/TitleTxt14Development Director
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IRS990/MissionDesc0The Familial Hypercholesterolemia Foundation ("The FH Foundation") was incorporated February 17, 2012 as a California nonprofit corporation. The FH Foundation is a patient-centered nonprofit dedicated to education, advocacy, and research of familial hypercholesterolemia (FH). The mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds.
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IRS990/OtherExpensesGrp/Desc0Data & Research
IRS990/OtherExpensesGrp/Desc1Events
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IRS990/OtherExpensesGrp/Desc3Miscellaneous
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IRS990/ProgSrvcAccomActy2Grp/Desc0FIND FH - Flag/Identify/Network/Deliver - is a national initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH patients. FIND FH directly addresses the fact that an estimated 90% of patients with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. FIND FH includes the development, validation, and implementation of algorithms to flag individuals who need to be screened by a clinician for a possible FH diagnosis. The algorithms search healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, The FH Foundation identifies healthcare providers (HCPs) with patients who have medical records containing key features consistent with a person having FH and reaches out to those HCPs to help them find the patients to be screened.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt01103130
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt01499000
IRS990/ProgSrvcAccomActy3Grp/Desc0FOCUS - FH Optimal Care in the US (FOCUS) creates and disseminates effective tools for patients, healthcare providers, policy makers, payers, and other partners to be used throughout the diagnosis, treatment, and long-term management phases of FH. FOCUS provides data-backed assistance utilizing clinical, economic, and humanistic outcomes to better inform the path forward. This work quantifies the challenges that individuals with FH have in gaining access to important new therapies. The FH Foundation addresses these challenges through data insights, awareness-raising efforts, educational tools (including the FOCUS Multimedia Toolkit and a mobile diagnostic app), and engagement of health plans and systems.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt0632307
IRS990/ProgSrvcAccomActyOtherGrp/Desc0FH Global Summit - The FH Foundation's FH Global Summit is an invitation-only conference bringing together world-renowned experts in FH, genetics, and healthcare policy to improve the awareness, diagnosis and management of FH. This two-day event features compelling and cutting edge presentations that share insights and research to enhance the scientific understanding of FH. Presenters and guests include leading cardiologists, lipidologists, researchers, physicians, and patients. The event provides a grand platform to share insights and practices underline for concerted and urgent action on behalf of those living with FH.
IRS990/ProgSrvcAccomActyOtherGrp/Desc1FH Awareness - The FH Awareness Campaign is an annual international health awareness and educational campaign that raises awareness of FH, bringing worldwide attention to its diagnosis and treatment throughout the month of September. As a key part of the campaign's development, the FH Foundation established FH Awareness Day on September 24th, which is now strengthened by multiple state proclamations and celebrated on a global scale.Since 2012, the FH Awareness Campaign has resulted in a potential reach of more than 80 million through its strategic use of news releases and PSAs, outdoor media, podcasts, and social media, including an annual "Tweet-a-thon."
IRS990/ProgSrvcAccomActyOtherGrp/Desc2Global Network - The Global Network is an effort to build an international collaborative community to address gaps in care for individuals with FH. The FH Foundation convenes stakeholders from around the world and acts as an honest broker for data driven solutions to improve outcomes for those living with FH. The Global Network is our effort to extend our mission and impact on a broader stage. This program includes the translation and delivery of our printed and online materials into many languages. Our website and social media platforms are often the first line of communication and the Global Network manages this outreach outside of the United States. In addition to the FH Foundation Staff, the members of the FH Foundation Scientific Advisory Board serve as ambassadors for our mission at international conferences, as leaders of professional organizations, and as principal investigators of scientific projects at major universities - key initiatives that extend our Global Network and accelerate our outreach.
IRS990/ProgSrvcAccomActyOtherGrp/Desc3The FH Foundation's Corporate Advisory Council (CAC) offers companies the opportunity to invest in the continued growth and success of the Familial Hypercholesterolemia (FH) Foundation by providing counsel and support to the leadership of the FH Foundation. The CAC is a unique forum for leaders in the pharmaceutical and biopharmaceutical industries, payers, communications sectors, bioinformatics, genomics, and healthcare institutions to engage in a bi-directional conversation aimed at positively impacting the FH community. The FH Foundation relies on the collective experience of CAC members to empower and activate our mission.
IRS990/ProgSrvcAccomActyOtherGrp/Desc4The FH Foundation conducted other smaller program activities throughout the year.
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt0554775
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt1477427
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt2131778
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt310460
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt444357
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Filings

Displayed year

2019 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$3,585,638
Liabilities
$219,414
Net assets
$3,366,224
Revenue
$3,459,476
Expenses
$5,012,467
Net income
-$1,552,991
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$7.35$2.08$5.27$8.89$7.84$1.05
2023Detailed filing. Detailed filing data is available for this year.$5.31$1.13$4.18$6.54$6.36$0.17
2022Detailed filing. Detailed filing data is available for this year.$4.49$0.55$3.93$2.81$4.73$1.92
2021Detailed filing. Detailed filing data is available for this year.$6.40$0.38$6.02$4.76$2.86$1.90
2020Detailed filing. Detailed filing data is available for this year.$4.37$0.31$4.06$3.76$3.12$0.64
2019Detailed filing. Detailed filing data is available for this year.$3.59$0.22$3.37$3.46$5.01$1.55
2018Detailed filing. Detailed filing data is available for this year.$5.28$0.46$4.82$3.10$5.69$2.59
2017Detailed filing. Detailed filing data is available for this year.$7.64$0.18$7.46$5.69$5.04$0.65
2016Detailed filing. Detailed filing data is available for this year.$6.97$0.18$6.79$6.16$4.09$2.07
2015Detailed filing. Detailed filing data is available for this year.$4.84$0.12$4.72$4.35$3.18$1.17
2014Detailed filing. Detailed filing data is available for this year.$3.58$0.03$3.55$3.10$1.45$1.65
2013Detailed filing. Detailed filing data is available for this year.$0.37$0.01$0.36$0.76$0.85$0.08
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.44$0.00$0.44$0.14