Civic Intelligence

Dysautonomia Foundation Inc DBA Familial Dysautonomia Foundation

990 • Fiscal year 2018 • EIN 13-6145280

Jan 01, 2018 to Dec 31, 2018 • Filed on Sep 12, 2019

Organization Profilewww.familialdysautonomia.org

View Organization Page

315 W 39th StreetNew York, NY 10018

(212) 279-1066

Siviq Scores

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

Liabilities / Assets

15th percentile

0.00x

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

2018 filings • NTEE G • $1M-$5M nonprofits • Source year 2018

Liabilities / Revenue

15th percentile

0.00x

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

2018 filings • NTEE G • $1M-$5M nonprofits • Source year 2018

Net Margin

54th percentile

11%

Higher net margin than 54% of similar nonprofits.

2018 filings • NTEE G • $1M-$5M nonprofits • Source year 2018

Top Officer Pay

82nd percentile

$174,498

Higher top officer pay than 82% of similar nonprofits.

Top officer pay equals 8.8% of source-year revenue.

2018 filings • NTEE G • $1M-$5M nonprofits • Source year 2018

Asset Growth

56th percentile

7.3%

Faster asset growth than 56% of similar nonprofits.

2018 filings • NTEE G • $1M-$5M nonprofits • Annualized from 2017 to 2018

Revenue Growth

64th percentile

16%

Faster revenue growth than 64% of similar nonprofits.

2018 filings • NTEE G • $1M-$5M nonprofits • Annualized from 2017 to 2018

Balance Sheet
Liabilities / Assets15th percentile

Assets

Up

$2,229,633

Up $152,581 (+7.3%) from 2017

Net Assets

Up

$2,229,633

Up $152,581 (+7.3%) from 2017

Liabilities

Flat

$0

Flat from 2017

Revenue And Expenses
Liabilities / Revenue15th percentileNet Margin54th percentile

Revenue

Up

$1,984,961

Up $271,677 (+16%) from 2017

Expenses

Down

$1,760,177

Down $667,209 (-27%) from 2017

Net Income

Up

$224,784

Up $938,886 (+131%) from 2017

Historical Trend

Balance Sheet Trend

Asset Growth56th percentile

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

$6.0M$4.0M$2.0M$0Assets 2011: $4,116,432Liabilities 2011: $0Net Assets 2011: $4,116,4322011Assets 2012: $4,159,897Liabilities 2012: $0Net Assets 2012: $4,159,8972012Assets 2013: $3,521,461Liabilities 2013: $0Net Assets 2013: $3,521,4612013Assets 2014: $3,124,728Liabilities 2014: $0Net Assets 2014: $3,124,7282014Assets 2015: $2,595,265Liabilities 2015: $0Net Assets 2015: $2,595,2652015Assets 2016: $2,791,154Liabilities 2016: $0Net Assets 2016: $2,791,1542016Assets 2017: $2,077,052Liabilities 2017: $0Net Assets 2017: $2,077,0522017Assets 2018: $2,229,633Liabilities 2018: $0Net Assets 2018: $2,229,6332018Assets 2019: $1,860,719Liabilities 2019: $0Net Assets 2019: $1,860,7192019Assets 2020: $1,809,411Liabilities 2020: $55,785Net Assets 2020: $1,753,6262020Assets 2021: $2,301,553Liabilities 2021: $8,595Net Assets 2021: $2,292,9582021Assets 2022: $2,168,499Liabilities 2022: $139,650Net Assets 2022: $2,028,8492022Assets 2023: $1,503,412Liabilities 2023: $198,563Net Assets 2023: $1,304,8492023Assets 2024: $1,097,266Liabilities 2024: $263,573Net Assets 2024: $833,6932024

Highlighted filing

2018

Assets$2,229,633
Liabilities$0
Net Assets$2,229,633
Open 2018 Filing

Operations Trend

Revenue Growth64th percentile

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

$3.0M$2.0M$1.0M$0-$1.0MRevenue 2011: $1,858,724Expenses 2011: $1,616,096Net Income 2011: $242,6282011Revenue 2012: $1,984,331Expenses 2012: $2,039,181Net Income 2012: -$54,8502012Revenue 2013: $1,464,527Expenses 2013: $2,276,804Net Income 2013: -$812,2772013Revenue 2014: $1,921,666Expenses 2014: $2,297,530Net Income 2014: -$375,8642014Revenue 2015: $1,261,736Expenses 2015: $1,672,655Net Income 2015: -$410,9192015Revenue 2016: $1,719,922Expenses 2016: $1,626,677Net Income 2016: $93,2452016Revenue 2017: $1,713,284Expenses 2017: $2,427,386Net Income 2017: -$714,1022017Revenue 2018: $1,984,961Expenses 2018: $1,760,177Net Income 2018: $224,7842018Revenue 2019: $1,424,379Expenses 2019: $1,878,693Net Income 2019: -$454,3142019Revenue 2020: $1,813,432Expenses 2020: $1,826,476Net Income 2020: -$13,0442020Revenue 2021: $2,387,593Expenses 2021: $1,850,796Net Income 2021: $536,7972021Revenue 2022: $1,577,517Expenses 2022: $1,830,056Net Income 2022: -$252,5392022Revenue 2023: $1,215,749Expenses 2023: $1,940,535Net Income 2023: -$724,7862023Revenue 2024: $1,558,104Expenses 2024: $2,029,315Net Income 2024: -$471,2112024

Highlighted filing

2018

Revenue$1,984,961
Expenses$1,760,177
Net Income$224,784
Open 2018 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2018 to Dec 31, 2018
Signed
Sep 12, 2019
Return Version
2018v3.1
Gross Receipts
$2,100,507
Mission and Program Overview

Mission

The dysautonomia foundation supports and operates programs focused on the medical care, research, social services, and public education for the benefit of people affected by or at risk for familial dysautonomia fd.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$1,130,013$895,386▼ $234,627
Land, Buildings, and Equipment, Net$54,837$50,453▼ $4,384
Savings and Temporary Cash Investments-$0-
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$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-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Prepaid Expenses and Deferred Charges-$0-
Total Assets$2,077,052$2,229,633▲ $152,581
Other Assets Total$892,202$1,283,794▲ $391,592
Liabilities
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Unrestricted Net Assets$2,077,052$2,229,633▲ $152,581
Total Net Assets Fund Balance$2,077,052$2,229,633▲ $152,581
Total Liabilities and Net Assets / Fund Balance$2,077,052$2,229,633▲ $152,581

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$46,583$14,686$61,269
Leasehold Improvements$3,870$430$4,300
Compensation and Service Providers
Top Officer Pay82nd percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Lanie EtkindExecutive DirectorFT$152,365$22,133$174,498

Board Members and Trustees

NameTitle
Faye GinsburgPresident
Edward BaranoffVice President
Jeffrey GoldbergerVice President
Laurent LandauVice President
Lisa NewmanVice President
Paul B WexlerVice President
Steven KietzVice President
Barbara WaldfogelDirector
David SteinerDirector
Gerald AdlerDirector
Howard WeiserDirector
Jennifer SonensheinDirector
Steven S FassSecretary
Allan CohenTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$622,052
Program Service Revenue
$0
Investment Income
$35,470
Other Revenue
$1,327,439
All Other Contributions
$622,052
Change in Net Assets
$224,784

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,984,961
Total Revenue per Audited Statements
$1,984,961
Total Revenue per Form 990
$1,984,961
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$1,090,636
Other Expenses$348,724
Salaries, Compensation, and Employee Benefits$320,817
Total Fundraising Expense$57,743
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,090,636--$1,090,636
Current Officers, Directors, Trustees, and Key Employees$111,679$45,369$17,450$174,498
Fees for Services Other$93,849$37,361$710$131,920
Other Salaries and Wages$72,000$29,250$11,250$112,500
Office Expenses$19,129$23,725$10,916$53,770
Occupancy$15,128$14,413$2,882$32,423
Payroll Taxes$11,910$4,838$1,861$18,609
Other Employee Benefits$9,734$3,955$1,521$15,210
Depreciation Depletion$2,118$2,647$7,919$12,684
Travel$5,295$1,250-$6,545
Insurance$2,571$3,214$643$6,428
Other Expenses$913$1,141$228$2,282
Conferences and Meetings$2,075--$2,075
All Other Expenses$564$705$141$1,410
Advertising$352$440$148$940
Total Functional Expenses$1,523,554$178,880$57,743$1,760,177

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$1,760,177
Total Expenses per Audited Statements$1,760,177
Total Expenses per Form 990$1,760,177
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Nyu School of MedicineNew York, NY-Research & Treatment$1,038,136
University of TenesseeMemphis, TN-Research & Treatment$37,500
Visio-d Consultants LLCMiami, FL-Research & Treatment$15,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$1,316,413
Fundraising Direct Expenses$115,546
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Goldberger Event$690,699$690,699$555$690,144
Mobile Cause$277,828$277,828$500$277,328
Total Events$1,316,413$1,316,413$115,546$1,200,867
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
Yes
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, Line 11B: Form 990 Review Process

“The organization's form 990 is reviewed by the executive director, the treasurer, the president and an independent accountant prior to filing. The form 990 is made available to all directors.”

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

“All directors are required to sign an annual compliance agreement.”

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

“Compensation process for top official compensation is determined initially by a committee that establishes an employment contract. It is subsequently adjusted by the committee according to cost of living, perfpormance increases and comparison to comparable industry levels.”

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

“Governing documents disclosure explanation documents are made available to the public upon request.”

Filing and Contact Details

Filer

Filer Name
Dysautonomia Foundation
EIN
13-6145280
Phone
2122791066
Address
315 W 39TH STREET, NEW YORK, NY 10018

Signing Officer

Name
Allan Cohen
Title
Treasurer
Signed
2019-09-12
Discuss with paid preparer
Yes

Organization Details

Formed
1954
Legal Domicile
Ny
Voting Board Members
15
Independent Board Members
14
Employees
5

Preparer

Firm
Effy Steigman & Co Cpas Pc
Address
505 CROWN ST, BROOKLYN, NY 11213-5126
Preparer
Effy Steigman
Phone
3475337210
Supplemental Narrative

Financial Statement Notes

Part X : FIN48 Footnote

“Tax Uncertainties - The Organization accounts for income taxes in accordance with the income tax accounting guidance, as set forth in FASB ASC Topic 740, Income Taxes, which requires that tax positions initially need to be recognized in the financial statements when it is more likely than not that the positions will be sustained upon examination by the tax authorities. It also provides guidance for derecognition, classification, interest and penalties, accounting in interim periods, disclosure and transition. As of December 31, 2017, the Organization had no uncertain tax positions that qualify for either recognition or disclosure in the financial statements. The Organization's policy is to record interest expense and penalties related to income taxes as operating expenses.”

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IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt130
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IRS990/Form990PartVIISectionAGrp/TitleTxt0President
IRS990/Form990PartVIISectionAGrp/TitleTxt1Treasurer
IRS990/Form990PartVIISectionAGrp/TitleTxt2Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt3Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt4Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt5Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt6Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt7Vice President
IRS990/Form990PartVIISectionAGrp/TitleTxt8Secretary
IRS990/Form990PartVIISectionAGrp/TitleTxt9Director
IRS990/Form990PartVIISectionAGrp/TitleTxt10Director
IRS990/Form990PartVIISectionAGrp/TitleTxt11Director
IRS990/Form990PartVIISectionAGrp/TitleTxt12Director
IRS990/Form990PartVIISectionAGrp/TitleTxt13Director
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IRS990/FundraisingGrossIncomeAmt01316413
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IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/TotalAmt00
IRS990/InsuranceGrp/FundraisingAmt0643
IRS990/InsuranceGrp/ManagementAndGeneralAmt03214
IRS990/InsuranceGrp/ProgramServicesAmt02571
IRS990/InsuranceGrp/TotalAmt06428
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IRS990/InterestGrp/TotalAmt00
IRS990/InventoriesForSaleOrUseGrp/EOYAmt00
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IRS990/InvestmentsPubTradedSecGrp/EOYAmt00
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IRS990/IRPDocumentCnt023
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IRS990/LandBldgEquipCostOrOtherBssAmt065569
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IRS990/LoanOutstandingInd0false
IRS990/LobbyingActivitiesInd0false
IRS990/LocalChaptersInd0true
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IRS990/MissionDesc0THE DYSAUTONOMIA FOUNDATION SUPPORTS AND OPERATES PROGRAMS FOCUSED ON THE MEDICAL CARE, RESEARCH, SOCIAL SERVICES, AND PUBLIC EDUCATION FOR THE BENEFIT OF PEOPLE AFFECTED BY OR AT RISK FOR FAMILIAL DYSAUTONOMIA FD.
IRS990/MoreThan5000KToIndividualsInd0false
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IRS990/NetAssetsOrFundBalancesEOYAmt02229633
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt00
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt01200867
IRS990/NetIncomeFromGamingGrp/TotalRevenueColumnAmt00
IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt00
IRS990/NetRentalIncomeOrLossGrp/TotalRevenueColumnAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-72203
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IRS990/OccupancyGrp/FundraisingAmt02882
IRS990/OccupancyGrp/ManagementAndGeneralAmt014413
IRS990/OccupancyGrp/ProgramServicesAmt015128
IRS990/OccupancyGrp/TotalAmt032423
IRS990/OfficeExpensesGrp/FundraisingAmt010916
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt023725
IRS990/OfficeExpensesGrp/ProgramServicesAmt019129
IRS990/OfficeExpensesGrp/TotalAmt053770
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IRS990/OnBehalfOfIssuerInd0false
IRS990/OperateHospitalInd0false
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OrgFiledInLieuOfForm1041Ind0false
IRS990/OtherAssetsTotalGrp/BOYAmt0892202
IRS990/OtherAssetsTotalGrp/EOYAmt01283794
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt01521
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt03955
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt09734
IRS990/OtherEmployeeBenefitsGrp/TotalAmt015210
IRS990/OtherExpensesGrp/Desc0Public Education
IRS990/OtherExpensesGrp/Desc1Bank Charges
IRS990/OtherExpensesGrp/Desc2Social Services
IRS990/OtherExpensesGrp/Desc3Postage and Shipping
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IRS990/OtherExpensesGrp/FundraisingAmt1228
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt0200
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt110372
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt21141
IRS990/OtherExpensesGrp/ProgramServicesAmt065757
IRS990/OtherExpensesGrp/ProgramServicesAmt18297
IRS990/OtherExpensesGrp/ProgramServicesAmt211547
IRS990/OtherExpensesGrp/ProgramServicesAmt3913
IRS990/OtherExpensesGrp/TotalAmt065957
IRS990/OtherExpensesGrp/TotalAmt120743
IRS990/OtherExpensesGrp/TotalAmt211547
IRS990/OtherExpensesGrp/TotalAmt32282
IRS990/OtherRevenueTotalAmt00
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt011250
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt029250
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt072000
IRS990/OtherSalariesAndWagesGrp/TotalAmt0112500
IRS990/OthNotesLoansReceivableNetGrp/EOYAmt00
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd0false
IRS990/PaymentsToAffiliatesGrp/TotalAmt00
IRS990/PayPremiumsPrsnlBnftCntrctInd0false
IRS990/PayrollTaxesGrp/FundraisingAmt01861
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt04838
IRS990/PayrollTaxesGrp/ProgramServicesAmt011910
IRS990/PayrollTaxesGrp/TotalAmt018609
IRS990/PensionPlanContributionsGrp/TotalAmt00
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IRS990/PYInvestmentIncomeAmt0136184
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IRS990/PYOtherRevenueAmt01175287
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IRS990/RoyaltiesRevenueGrp/TotalRevenueColumnAmt0126572
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IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt01446523
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt01603684
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt01345947
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt01915663
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt08134738
IRS990ScheduleA/GovtFurnSrvcFcltsVl509Grp/TotalAmt00
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IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus2YearsAmt0113404
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus3YearsAmt070152
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus4YearsAmt0113165
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt0396172

Document Assets

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Filings

Displayed year

2018 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,229,633
Liabilities
$0
Net assets
$2,229,633
Revenue
$1,984,961
Expenses
$1,760,177
Net income
$224,784
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.10$0.26$0.83$1.56$2.03$0.47
2023Summary only. Only limited summary data is available for this year.$1.50$0.20$1.30$1.22$1.94$0.72
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.17$0.14$2.03$1.58$1.83$0.25
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.30$0.01$2.29$2.39$1.85$0.54
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.81$0.06$1.75$1.81$1.83$0.01
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.86$0.00$1.86$1.42$1.88$0.45
2018Detailed filing. Detailed filing data is available for this year.$2.23$0.00$2.23$1.98$1.76$0.22
2017Summary only. Only limited summary data is available for this year.$2.08$0.00$2.08$1.71$2.43$0.71
2016Summary only. Only limited summary data is available for this year.$2.79$0.00$2.79$1.72$1.63$0.09
2015Summary only. Only limited summary data is available for this year.$2.60$0.00$2.60$1.26$1.67$0.41
2014Summary only. Only limited summary data is available for this year.$3.12$0.00$3.12$1.92$2.30$0.38
2013Summary only. Only limited summary data is available for this year.$3.52$0.00$3.52$1.46$2.28$0.81
2012Summary only. Only limited summary data is available for this year.$4.16$0.00$4.16$1.98$2.04$0.05
2011Summary only. Only limited summary data is available for this year.$4.12$0.00$4.12$1.86$1.62$0.24