Civic Intelligence

MLD Foundation

990EZ • Fiscal year 2017 • EIN 93-1320953

Jan 01, 2017 to Dec 31, 2017 • Filed on Nov 14, 2018

21345 Miles DriveWest Linn, OR 97068

(503) 656-4808

Siviq Scores

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

Liabilities / Assets

59th percentile

0.00x

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

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Liabilities / Revenue

57th percentile

0.00x

Higher debt load relative to revenue than 57% of similar nonprofits.

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Net Margin

12th percentile

-28%

Higher net margin than 12% of similar nonprofits.

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Top Officer Pay

76th percentile

$0

Higher top officer pay than 76% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

2017 filings • 501(c)3 • <$500k nonprofits • Source year 2017

Asset Growth

8th percentile

-54%

Faster asset growth than 8% of similar nonprofits.

2017 filings • 501(c)3 • <$500k nonprofits • Annualized from 2016 to 2017

Revenue Growth

14th percentile

-35%

Faster revenue growth than 14% of similar nonprofits.

2017 filings • 501(c)3 • <$500k nonprofits • Annualized from 2016 to 2017

Assets

Down

$25,813

Down $30,884 (-54%) from 2016

Net Assets

Down

$25,724

Down $25,874 (-50%) from 2016

Liabilities

Down

$89

Down $5,010 (-98%) from 2016

Revenue

Down

$92,063

Down $48,500 (-35%) from 2016

Expenses

Down

$117,937

Down $56,615 (-32%) from 2016

Net Income

Up

-$25,874

Up $8,115 (+24%) from 2016

Historical Trend

Balance Sheet Trend

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

$100K$50K$0Assets 2010: $47,190Liabilities 2010: $2,852Net Assets 2010: $44,3382010Assets 2011: $52,367Liabilities 2011: $326Net Assets 2011: $52,0412011Assets 2012: $65,832Liabilities 2012: $11,799Net Assets 2012: $54,0332012Assets 2013: $84,102Liabilities 2013: $0Net Assets 2013: $84,1022013Assets 2014: $81,416Liabilities 2014: $1,801Net Assets 2014: $79,6152014Assets 2015: $94,275Liabilities 2015: $3,977Net Assets 2015: $90,2982015Assets 2016: $56,697Liabilities 2016: $5,099Net Assets 2016: $51,5982016Assets 2017: $25,813Liabilities 2017: $89Net Assets 2017: $25,7242017Assets 2018: $25,986Liabilities 2018: $0Net Assets 2018: $25,9862018Assets 2019: $26,854Liabilities 2019: $1,016Net Assets 2019: $25,8382019Assets 2020: $60,909Liabilities 2020: $0Net Assets 2020: $60,9092020Assets 2021: $53,888Liabilities 2021: $0Net Assets 2021: $53,8882021Assets 2022: $36,447Liabilities 2022: $0Net Assets 2022: $36,4472022Assets 2023: $25,309Liabilities 2023: $0Net Assets 2023: $25,3092023Assets 2024: $29,430Liabilities 2024: $0Net Assets 2024: $29,4302024

Highlighted filing

2017

Assets$25,813
Liabilities$89
Net Assets$25,724

Operations Trend

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

$200K$100K$0-$100KRevenue 2010: $80,367Expenses 2010: $77,358Net Income 2010: $3,0092010Revenue 2011: $94,240Expenses 2011: $94,213Net Income 2011: $272011Revenue 2012: $66,542Expenses 2012: $66,780Net Income 2012: -$2382012Revenue 2013: $126,712Expenses 2013: $94,103Net Income 2013: $32,6092013Revenue 2014: $160,710Expenses 2014: $160,362Net Income 2014: $3482014Revenue 2015: $157,237Expenses 2015: $148,929Net Income 2015: $8,3082015Revenue 2016: $140,563Expenses 2016: $174,552Net Income 2016: -$33,9892016Revenue 2017: $92,063Expenses 2017: $117,937Net Income 2017: -$25,8742017Revenue 2018: $126,553Expenses 2018: $126,292Net Income 2018: $2612018Revenue 2019: $160,222Expenses 2019: $159,938Net Income 2019: $2842019Revenue 2020: $135,871Expenses 2020: $99,747Net Income 2020: $36,1242020Revenue 2021: $116,696Expenses 2021: $124,265Net Income 2021: -$7,5692021Revenue 2022: $78,235Expenses 2022: $95,676Net Income 2022: -$17,4412022Revenue 2023: $141,705Expenses 2023: $151,614Net Income 2023: -$9,9092023Revenue 2024: $111,163Expenses 2024: $135,765Net Income 2024: -$24,6022024

Highlighted filing

2017

Revenue$92,063
Expenses$117,937
Net Income-$25,874
Jump To
Filing Snapshot
Filing Period
Jan 1, 2017 to Dec 31, 2017
Signed
Nov 14, 2018
Return Version
2017v2.0
Gross Receipts
$92,063
Mission and Program Overview

Mission

MLD Foundation works with families, researchers, regulators, industry, and policy-makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and implement newborn screening tests and policies, develop and improve therapies for MLD, and influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(R) reflects our mission of Compassion, Awareness, Research, and Education. Today there are no adequate therapies in the US and there is no cure. Clinical care and diagnostics including newborn screening, are improving but have much more to improve upon. The MLD Foundation was formed in May 2001 and serves newly diagnosed families as well as those at all stages of the MLD journey in the US and internationally.

MLD Foundation works with families, researchers, regulators, industry, and policy makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and improve therapies for MLD, and influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(tm) reflects our mission of Compassion, Awareness, Research and Education. Today there are not adequate therapies and there is no cure. Clinical care and diagnostics, including newborn screening, are improving but have much more to improve upon. The MLD Foundation was formed in May 2001.

Program Services

DescriptionGrantsExpenses
COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Plymouth Meeting, PA with 76 people in attendance. Brought together families, researchers, doctors, service providers and other resources for two-day meetings with the common goal of providing insight to improving the quality of life for those with MLD and their caregivers. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to facilitating the building relationships between the families. (approx 30 families directly affected - hundreds more when they view the live webcast and conference videos freely posted on the MLD Foundation website). Visited numerous other families in their hometowns during our other travels.$24,750$53,820
INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, facilitated and attended GLIA meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/NICHD Newborn Screening meetings, organized two RUSP Roundtable meetings (newborn screening policy and technology), continued MLD newborn screening pilot study, transferred a set of mice from the US MLD mouse colony that we established to a new biotech firm, and visited researchers at their home facilities representing the interests of MLD families and other researchers. Supported global clinical trial recruiting and development of MLD standards of care. Working towards standards for clinical research excellence to improve quality of life for patients/families and further lysosomal and leukodystrophy research.$0$28,792
COMPASSION ... MLD Family Compassion Fund(tm) and Compassion grants support many families. Meet with families and small family groups where a MLD Family Conference is not possible. These visits and Third Program Service Accomplishments Description MLD Family Gatherings(tm) bring families in a geography together to meet each other - often for the very first time to educate and further connect those families with the MLD Foundation and other families. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to building relationships between the families. (approx 20 families). Direct Quality of Life case management for several families. Direct family financial support through our independently managed MLD Family Compassion Fund.$0$15,354
COMPASSION & RESEARCH - PATIENT POWERED SUPPORT AND RESEARCH ... The MLD Family Discussion List is the world's largest electronic gathering of families affected by MLD. They share experiences, compassion, support, and ideas with each other to provide the highest quality of life to those affected by MLD. Partnered with Genetic Alliance on a PCORI funded patient powered research network which will result in a next generation registry launch to supplement the MLD Family Profile registry which captures family demographic information and is quickly becoming the largest international database of MLD family histories. This data will be compiled and shared in a de-identified manner to improve MLD research, natural history studies, and clinical trials. Also includes electronic and paper publications. (700+ families)$0$1,549
EDUCATION ... Visited NIH, FDA, Capitol Hill to educate on issues of importance to MLD affected families, researchers, and industry. World RARE disease day events, FDA rare disease workshops, HHS/ACHDNC (newborn screening) testimony. Focus on the implementation of electronic medical records, orphan disease research, registries, and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research.$0$881
Rare Honor/Gifting With Purpose ... licensed patent and supporting implementation of fund raising platform for MLD Foundation. Have rights to make available to all 501c3s with a royalty stream to MLD Foundation.$0$284
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Christine HoffmannDirector-$0--
Rob TeachDirector-$0--
Marc Patterson MDDirector-$0--
Wilson SmithDirector-$0--
Teryn SuhrExecutive DirectorPT$0--
Dean SuhrPresidentFT$0--
Filing and Contact Details

Filer

Filer Name
Mld Foundation
EIN
93-1320953
Phone
5036564808
Address
21345 Miles Drive, West Linn, OR 97068

Signing Officer

Name
Dean Suhr
Title
President
Phone
5036564808
Signed
2018-11-14
Supplemental Narrative

Additional Explanations

Form 990-EZ, Part I, Line 16

Description;Amount^Awareness;3342|Bank fees;694|Family Conference Expenses;53797|Conferences research policy awareness;26364|Education;881|Government fees;256|Research;10941^Total;96275^

Form 990-EZ, Part II, Line 26

Current liabilities

Raw XML Appendix259 raw XML fields

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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IRS990EZ/PrimaryExemptPurposeTxt0MLD Foundation works with families, researchers, regulators, industry, and policy makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and improve therapies for MLD, and influence & fund research for a cure. Metachromatic leukodystrophy (MLD) is a rare genetic neuro-metabolic degenerative terminal condition affecting people, predominantly infants and children, throughout the world. Our slogan, "We C.A.R.E."(tm) reflects our mission of Compassion, Awareness, Research and Education. Today there are not adequate therapies and there is no cure. Clinical care and diagnostics, including newborn screening, are improving but have much more to improve upon. The MLD Foundation was formed in May 2001.
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IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt0COMPASSSION & EDUCATION ... Organized and hosted MLD Family Conference(tm) in Plymouth Meeting, PA with 76 people in attendance. Brought together families, researchers, doctors, service providers and other resources for two-day meetings with the common goal of providing insight to improving the quality of life for those with MLD and their caregivers. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to facilitating the building relationships between the families. (approx 30 families directly affected - hundreds more when they view the live webcast and conference videos freely posted on the MLD Foundation website). Visited numerous other families in their hometowns during our other travels.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt1INFLUENCE RESEARCH & AWARENESS - Attended medical and scientific conferences including the NIH/RDCRN-Lysosomal Disease Network's WORLD meeting, facilitated and attended GLIA meeting, visited the FDA, NIH, NINDS, World RARE Disease Day events in DC, HHS/NICHD Newborn Screening meetings, organized two RUSP Roundtable meetings (newborn screening policy and technology), continued MLD newborn screening pilot study, transferred a set of mice from the US MLD mouse colony that we established to a new biotech firm, and visited researchers at their home facilities representing the interests of MLD families and other researchers. Supported global clinical trial recruiting and development of MLD standards of care. Working towards standards for clinical research excellence to improve quality of life for patients/families and further lysosomal and leukodystrophy research.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt2COMPASSION ... MLD Family Compassion Fund(tm) and Compassion grants support many families. Meet with families and small family groups where a MLD Family Conference is not possible. These visits and Third Program Service Accomplishments Description MLD Family Gatherings(tm) bring families in a geography together to meet each other - often for the very first time to educate and further connect those families with the MLD Foundation and other families. We share research and clinical trial updates, answer questions, and allocate the bulk of the time to building relationships between the families. (approx 20 families). Direct Quality of Life case management for several families. Direct family financial support through our independently managed MLD Family Compassion Fund.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt3COMPASSION & RESEARCH - PATIENT POWERED SUPPORT AND RESEARCH ... The MLD Family Discussion List is the world's largest electronic gathering of families affected by MLD. They share experiences, compassion, support, and ideas with each other to provide the highest quality of life to those affected by MLD. Partnered with Genetic Alliance on a PCORI funded patient powered research network which will result in a next generation registry launch to supplement the MLD Family Profile registry which captures family demographic information and is quickly becoming the largest international database of MLD family histories. This data will be compiled and shared in a de-identified manner to improve MLD research, natural history studies, and clinical trials. Also includes electronic and paper publications. (700+ families)
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt4EDUCATION ... Visited NIH, FDA, Capitol Hill to educate on issues of importance to MLD affected families, researchers, and industry. World RARE disease day events, FDA rare disease workshops, HHS/ACHDNC (newborn screening) testimony. Focus on the implementation of electronic medical records, orphan disease research, registries, and newborn screening for rare diseases. Host numerous websites to inform, educate, influence, and support MLD families and research.
IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt5Rare Honor/Gifting With Purpose ... licensed patent and supporting implementation of fund raising platform for MLD Foundation. Have rights to make available to all 501c3s with a royalty stream to MLD Foundation.
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IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/NetIncomeFromOtherUBIGrp/TotalAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/OtherIncome509Grp/TotalAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/Post1975UBTIGrp/TotalAmt00
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.97428
IRS990ScheduleA/PublicSupportPY509Pct00.99031
IRS990ScheduleA/PublicSupportTotal509Amt0654037
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt010958
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt06214
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt017172
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearAmt010958
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus1YearAmt06214
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/SubstantialContributorsAmtGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/SubstantialContributorsAmtGrp/TotalAmt017172
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft509Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt093267
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0152548
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0157206
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0150948
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0117240
IRS990ScheduleA/Total509Grp/TotalAmt0671209
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt093280
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0152563
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt0157236
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0150966
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0117261
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt0671306
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0Description;Amount^Awareness;3342|Bank fees;694|Family Conference Expenses;53797|Conferences research policy awareness;26364|Education;881|Government fees;256|Research;10941^Total;96275^
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1Current liabilities
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990-EZ, Part I, Line 16
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990-EZ, Part II, Line 26
ReturnHeader/BuildTS02019-02-21 02:37:17Z
ReturnHeader/BusinessOfficerGrp/PersonNm0Dean Suhr
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0President
ReturnHeader/BusinessOfficerGrp/PhoneNum05036564808
ReturnHeader/BusinessOfficerGrp/SignatureDt02018-11-14
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0MLD FOUNDATION
ReturnHeader/Filer/BusinessNameControlTxt0MLDF
ReturnHeader/Filer/EIN0931320953
ReturnHeader/Filer/PhoneNum05036564808
ReturnHeader/Filer/USAddress/AddressLine1Txt021345 Miles Drive
ReturnHeader/Filer/USAddress/CityNm0West Linn
ReturnHeader/Filer/USAddress/StateAbbreviationCd0OR
ReturnHeader/Filer/USAddress/ZIPCd097068
ReturnHeader/FilingSecurityInformation/IPAddress/IPv4AddressTxt050.78.184.54
ReturnHeader/ReturnTs02018-11-14T18:54:10-07:00
ReturnHeader/ReturnTypeCd0990EZ
ReturnHeader/TaxPeriodBeginDt02017-01-01
ReturnHeader/TaxPeriodEndDt02017-12-31
ReturnHeader/TaxYr02017

Document Assets

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Filings

Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$0.29$0.00$0.29$1.11$1.36$0.25
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.25$0.00$0.25$1.42$1.52$0.10
2022Detailed filing. Detailed filing data is available for this year.$0.36$0.00$0.36$0.78$0.96$0.17
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.54$0.00$0.54$1.17$1.24$0.08
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.61$0.00$0.61$1.36$1.00$0.36
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.27$0.01$0.26$1.60$1.60$0.00
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.26$0.00$0.26$1.27$1.26$0.00
2017Detailed filing. Detailed filing data is available for this year.$0.26$0.00$0.26$0.92$1.18$0.26
2016Detailed filing. Detailed filing data is available for this year.$0.57$0.05$0.52$1.41$1.75$0.34
2015Detailed filing. Detailed filing data is available for this year.$0.94$0.04$0.90$1.57$1.49$0.08
2014XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.81$0.02$0.80$1.61$1.60$0.00
2013Detailed filing. Detailed filing data is available for this year.$0.84$0.00$0.84$1.27$0.94$0.33
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.66$0.12$0.54$0.67$0.67$0.00
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.52$0.00$0.52$0.94$0.94$0.00
2010XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$0.47$0.03$0.44$0.80$0.77$0.03