Civic Intelligence

Myotonic Dystrophy Foundation Inc

990 • Fiscal year 2016 • EIN 20-5014628

Jan 01, 2016 to Dec 31, 2016 • Filed on Aug 08, 2017

Organization ProfileWWW.MYOTONIC.ORG
1004A Oreilly AvenueSan Francisco, CA 94129

(415) 800-7745

Siviq Scores

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

Liabilities / Assets

45th percentile

0.07x

Higher debt load relative to assets than 45% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Liabilities / Revenue

44th percentile

0.08x

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

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Net Margin

23rd percentile

-9.2%

Higher net margin than 23% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Top Officer Pay

90th percentile

$203,973

Higher top officer pay than 90% of similar nonprofits.

Top officer pay equals 11.3% of source-year revenue.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Asset Growth

12th percentile

-10%

Faster asset growth than 12% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2015 to 2016

Revenue Growth

19th percentile

-16%

Faster revenue growth than 19% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2015 to 2016

Balance Sheet
Liabilities / Assets45th percentile

Assets

Down

$2,063,066

Down $236,622 (-10%) from 2015

Net Assets

Down

$1,920,754

Down $166,451 (-8.0%) from 2015

Liabilities

Down

$142,312

Down $70,171 (-33%) from 2015

Revenue And Expenses
Liabilities / Revenue44th percentileNet Margin23rd percentile

Revenue

Down

$1,805,876

Down $333,635 (-16%) from 2015

Expenses

Up

$1,972,327

Up $622,202 (+46%) from 2015

Net Income

Down

-$166,451

Down $955,837 (-121%) from 2015

Historical Trend

Balance Sheet Trend

Asset Growth12th percentile

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

$8.0M$6.0M$4.0M$2.0M$0Assets 2011: $1,890,239Liabilities 2011: $153,769Net Assets 2011: $1,736,4702011Assets 2012: $1,699,136Liabilities 2012: $537,530Net Assets 2012: $1,161,6062012Assets 2013: $2,085,873Liabilities 2013: $427,442Net Assets 2013: $1,658,4312013Assets 2014: $1,642,464Liabilities 2014: $344,645Net Assets 2014: $1,297,8192014Assets 2015: $2,299,688Liabilities 2015: $212,483Net Assets 2015: $2,087,2052015Assets 2016: $2,063,066Liabilities 2016: $142,312Net Assets 2016: $1,920,7542016Assets 2017: $3,288,895Liabilities 2017: $129,242Net Assets 2017: $3,159,6532017Assets 2018: $3,794,207Liabilities 2018: $471,821Net Assets 2018: $3,322,3862018Assets 2019: $3,955,407Liabilities 2019: $609,043Net Assets 2019: $3,346,3642019Assets 2020: $4,489,179Liabilities 2020: $322,658Net Assets 2020: $4,166,5212020Assets 2021: $5,846,076Liabilities 2021: $786,638Net Assets 2021: $5,059,4382021Assets 2022: $6,830,491Liabilities 2022: $1,488,211Net Assets 2022: $5,342,2802022Assets 2023: $5,467,413Liabilities 2023: $1,465,481Net Assets 2023: $4,001,9322023Assets 2024: $5,826,049Liabilities 2024: $1,917,906Net Assets 2024: $3,908,1432024

Highlighted filing

2016

Assets$2,063,066
Liabilities$142,312
Net Assets$1,920,754
Open 2016 Filing

Operations Trend

Revenue Growth19th percentile

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

$4.0M$2.0M$0-$2.0MExpenses 2011: $736,1602011Expenses 2012: $1,312,3652012Revenue 2013: $1,482,366Expenses 2013: $985,541Net Income 2013: $496,8252013Revenue 2014: $727,525Expenses 2014: $1,088,137Net Income 2014: -$360,6122014Revenue 2015: $2,139,511Expenses 2015: $1,350,125Net Income 2015: $789,3862015Revenue 2016: $1,805,876Expenses 2016: $1,972,327Net Income 2016: -$166,4512016Revenue 2017: $3,237,856Expenses 2017: $1,998,957Net Income 2017: $1,238,8992017Revenue 2018: $2,183,628Expenses 2018: $2,021,676Net Income 2018: $161,9522018Revenue 2019: $2,271,866Expenses 2019: $2,248,284Net Income 2019: $23,5822019Revenue 2020: $1,947,806Expenses 2020: $1,124,779Net Income 2020: $823,0272020Revenue 2021: $2,383,618Expenses 2021: $1,490,525Net Income 2021: $893,0932021Revenue 2022: $2,774,035Expenses 2022: $2,506,145Net Income 2022: $267,8902022Revenue 2023: $2,448,480Expenses 2023: $3,791,128Net Income 2023: -$1,342,6482023Revenue 2024: $3,659,795Expenses 2024: $3,754,033Net Income 2024: -$94,2382024

Highlighted filing

2016

Revenue$1,805,876
Expenses$1,972,327
Net Income-$166,451
Open 2016 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2016 to Dec 31, 2016
Signed
Aug 8, 2017
Return Version
2016v3.0
Gross Receipts
$1,881,009
Mission and Program Overview

Mission

To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$820,042$1,660,182▲ $840,140
Accounts Receivable$434,985$257,257▼ $177,728
Pledges and Grants Receivable$961,540$101,764▼ $859,776
Prepaid Expenses and Deferred Charges$26,159$31,798▲ $5,639
Cash and Non-Interest-Bearing Accounts$56,962$12,065▼ $44,897
Other Notes and Loans Receivable, Net-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Land, Buildings, and Equipment, Net-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$2,299,688$2,063,066▼ $236,622
Other Assets Total-$0-
Liabilities
Grants Payable$125,000$75,000▼ $50,000
Accounts Payable and Accrued Expenses$87,483$67,312▼ $20,171
Total Liabilities$212,483$142,312▼ $70,171
Net Assets / Fund Balance
Unrestricted Net Assets$1,689,900$1,690,704▲ $804
Temporarily Rstr Net Assets$397,305$230,050▼ $167,255
Total Net Assets Fund Balance$2,087,205$1,920,754▼ $166,451
Total Liabilities and Net Assets / Fund Balance$2,299,688$2,063,066▼ $236,622
Compensation and Service Providers
Top Officer Pay90th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Molly WhiteCEOFT$201,588$2,385$203,973

Board Members and Trustees

NameTitle
Jeremy KellyChairman
Woodie KesselVice-chairman
John BrekkaBoard Member
John FitzpatrickBoard Member
Melvin KohnBoard Member
Tim KaineBoard Member
Todd StoneBoard Member
Elizabeth FlorenceSecretary
David HerbertTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,551,282
Program Service Revenue
$206,241
Investment Income
$1,686
Other Revenue
$46,667
All Other Contributions
$1,198,412
Change in Net Assets
$-166,451

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,881,009
Revenue Not Reported on Financial Statements
$-75,133
Revenue Not Reported on Form 990
$586,530
Other Revenue Adjustments
$-75,133
Total Revenue per Audited Statements
$2,467,539
Total Revenue per Form 990
$1,805,876
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$998,425
Salaries, Compensation, and Employee Benefits$901,265
Total Fundraising Expense$252,134
Grants and Similar Amounts Paid$72,637
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$523,878$34,880$79,717$638,475
Fees for Services Other$386,462$36,550$29,928$452,940
Conferences and Meetings$262,629$16,114$63,840$342,583
Current Officers, Directors, Trustees, and Key Employees$167,360$11,137$25,476$203,973
Grants to Domestic Orgs$72,637--$72,637
Payroll Taxes$48,260$3,213$7,344$58,817
Occupancy$36,064$2,667$6,304$45,035
Information Technology$27,714$3,777$2,146$33,637
Fees for Services Accounting-$15,825-$15,825
Other Expenses$3,173$1,257$2,309$6,739
Insurance$2,117$2,258-$4,375
Fees for Services Legal-$297-$297
Total Functional Expenses$1,575,383$144,810$252,134$1,972,327

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$3,842,562
Expenses per Audited Statements$1,972,327
Total Expenses per Form 990$1,972,327
Expenses Not Reported on Form 990$1,870,235
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Ohio State UniversityColumbus, OH115Clinical Research$25,000
Picnic HealthSan Francisco, CA501(c)(3)Research$25,000
Stanford UniversityStanford, CA115Clinical Research$25,000
University of KansasLawrence, KS501(c)(3)Clinical Research$25,000
University of IowaIowa City, IA501(c)(3)Post Doctoral Support Research Proj$8,000
University of UtahSalt Lake City, UT-Clinical Research$6,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$121,800
Fundraising Direct Expenses$75,133
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Gala and Rally$474,670$121,800$75,133$46,667
Total Events$474,670$121,800$75,133$46,667
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
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
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Line 11B: Form 990 Review Process

“The board is provided a copy of the tax return for review prior to being finalized.”

Form 990, Part VI, Line 12C: Explanation of Monitoring and Enforcement of Conflicts

“The executive committee monitors and enforces compliance with the policy. The executive committee has a forum to raise and address any potential conflicts of interest and/or answer any questions. Mdf makes sure all decisions/actions are clear of conflicts during the weekly calls.”

Form 990, Part VI, Line 15A: Compensation Review & Approval Process - CEO, Top Management

“An independent human resource organization is used on a consulting basis to determine the appropriateness of salaries and other compensation.following that review, salaries are again reviewed and approved by both the executive committee and the full board.”

Form 990, Part VI, Line 19: Other Organization Documents Publicly Available

“AVAILABLE UPON REQUEST.”

Filing and Contact Details

Filer

Filer Name
Myotonic Dystrophy Foundation Inc
EIN
20-5014628
Phone
4158007745
Address
1004A OREILLY AVENUE, SAN FRANCISCO, CA 94129

Signing Officer

Name
Molly White
Title
CEO
Signed
2017-08-08
Discuss with paid preparer
Yes

Organization Details

Formed
2006
Legal Domicile
CA
Voting Board Members
9
Independent Board Members
9
Employees
9
Volunteers
40

Preparer

Firm
Propp Christensen Caniglia Llp
Address
9261 Sierra College Boulevard, Roseville, CA 95661-5919
Preparer
K Jeffrey De Lyser CPA
Phone
9167512900
Supplemental Narrative

Financial Statement Notes

Part XI, Line 2D: Other revenue amounts included in F/S but not included on form 990

“Affiliate's revenue on consolidated f/s $757424 intercompany eliminations $-170894”

Part XII, Line 2D: Other expenses and losses per audited F/S

“Affiliate's expenses on consolidated f/s $1965996 intercompany eliminations $-170894 special events expenses $75133”

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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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IRS990/MissionDesc0To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
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IRS990/OtherExpensesGrp/Desc1Printing and Publications
IRS990/OtherExpensesGrp/Desc2Postage and Shipping
IRS990/OtherExpensesGrp/FundraisingAmt026840
IRS990/OtherExpensesGrp/FundraisingAmt18230
IRS990/OtherExpensesGrp/FundraisingAmt22309
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt012355
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt14480
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt21257
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IRS990/OtherExpensesGrp/ProgramServicesAmt111307
IRS990/OtherExpensesGrp/ProgramServicesAmt23173
IRS990/OtherExpensesGrp/TotalAmt072977
IRS990/OtherExpensesGrp/TotalAmt124017
IRS990/OtherExpensesGrp/TotalAmt26739
IRS990/OtherRevenueTotalAmt00
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt079717
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt034880
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0523878
IRS990/OtherSalariesAndWagesGrp/TotalAmt0638475
IRS990/OthNotesLoansReceivableNetGrp/EOYAmt00
IRS990/PartialLiquidationInd0false
IRS990/PaymentsToAffiliatesGrp/TotalAmt00
IRS990/PayPremiumsPrsnlBnftCntrctInd0false
IRS990/PayrollTaxesGrp/FundraisingAmt07344
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt03213
IRS990/PayrollTaxesGrp/ProgramServicesAmt048260
IRS990/PayrollTaxesGrp/TotalAmt058817
IRS990/PensionPlanContributionsGrp/TotalAmt00
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0961540
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt0101764
IRS990/PoliticalCampaignActyInd0false
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt026159
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt031798
IRS990/ProfessionalFundraisingInd0false
IRS990/ProgramServiceRevenueGrp/BusinessCd0624100
IRS990/ProgramServiceRevenueGrp/BusinessCd1541700
IRS990/ProgramServiceRevenueGrp/Desc0Conference Revenue
IRS990/ProgramServiceRevenueGrp/Desc1RESEARCH REIMBURSEMENT
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt035347
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt1170894
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt035347
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt1170894
IRS990/ProgSrvcAccomActy2Grp/Desc0Education - We strive not only to help affected individuals, their families and medical professionals understand this disorder, but also to raise awareness about the disease in the general population. MDF supports and helps organize conferences for affected families and medical professionals.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0570739
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt035347
IRS990/ProgSrvcAccomActy3Grp/Desc0Advocacy - In collaboration with other organizations, we are establishing and perpetuating local and regional support groups to offer emotional support and help to educate families about this disease. In addition to providing information about available services, we advocate for increased funding for myotonic dystrophy research and patient support.
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IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt02113561
IRS990/PYExcessBenefitTransInd0false
IRS990/PYGrantsAndSimilarPaidAmt041977
IRS990/PYInvestmentIncomeAmt01425
IRS990/PymtTravelEntrtnmntPubOfclGrp/TotalAmt00
IRS990/PYOtherExpensesAmt0649980
IRS990/PYProgramServiceRevenueAmt024525
IRS990/PYRevenuesLessExpensesAmt0789386
IRS990/PYSalariesCompEmpBnftPaidAmt0658168
IRS990/PYTotalExpensesAmt01350125
IRS990/PYTotalRevenueAmt02139511
IRS990/QuidProQuoContributionsInd0false
IRS990/RcvblFromDisqualifiedPrsnGrp/EOYAmt00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReceivablesFromOfficersEtcGrp/EOYAmt00
IRS990/ReconcilationRevenueExpnssAmt0-166451
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0true
IRS990/RelatedOrganizationCtrlEntInd0true
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0false
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt0170894
IRS990/RoyaltiesGrp/TotalAmt00
IRS990/RoyaltiesRevenueGrp/TotalRevenueColumnAmt00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0820042
IRS990/SavingsAndTempCashInvstGrp/EOYAmt01660182
IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt00
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt01551282
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt02113561
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt0696805
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt01464729
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0726874
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt06553251
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/TotalAmt00
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt01686
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IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt02186
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt01457
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt0319
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IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus2YearsAmt028534
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus3YearsAmt016180
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt010308
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt0114894
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IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus3YearsAmt01457
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus4YearsAmt0319
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt07073
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IRS990ScheduleA/InvestmentIncomePYPct00.00090
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IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt01480909
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0737182
IRS990ScheduleA/Total509Grp/TotalAmt06668145
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IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt02139511
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IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt01482366
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0737501
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt06675218
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
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Filings

Displayed year

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

Open filing
Assets
$2,063,066
Liabilities
$142,312
Net assets
$1,920,754
Revenue
$1,805,876
Expenses
$1,972,327
Net income
-$166,451
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$5.83$1.92$3.91$3.66$3.75$0.09
2023Detailed filing. Detailed filing data is available for this year.$5.47$1.47$4.00$2.45$3.79$1.34
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.83$1.49$5.34$2.77$2.51$0.27
2021Detailed filing. Detailed filing data is available for this year.$5.85$0.79$5.06$2.38$1.49$0.89
2020Detailed filing. Detailed filing data is available for this year.$4.49$0.32$4.17$1.95$1.12$0.82
2019Detailed filing. Detailed filing data is available for this year.$3.96$0.61$3.35$2.27$2.25$0.02
2018Detailed filing. Detailed filing data is available for this year.$3.79$0.47$3.32$2.18$2.02$0.16
2017Detailed filing. Detailed filing data is available for this year.$3.29$0.13$3.16$3.24$2.00$1.24
2016Detailed filing. Detailed filing data is available for this year.$2.06$0.14$1.92$1.81$1.97$0.17
2015Detailed filing. Detailed filing data is available for this year.$2.30$0.21$2.09$2.14$1.35$0.79
2014Detailed filing. Detailed filing data is available for this year.$1.64$0.34$1.30$0.73$1.09$0.36
2013Detailed filing. Detailed filing data is available for this year.$2.09$0.43$1.66$1.48$0.99$0.50
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.70$0.54$1.16$1.31
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.89$0.15$1.74$0.74