Civic Intelligence

Pkd Foundation

990 • Fiscal year 2019 • EIN 43-1266906

Jul 01, 2018 to Jun 30, 2019 • Filed on Mar 10, 2020

Organization ProfileWWW.PKDCURE.ORG

View Organization Page

1001 E 101st Ter No 220Kansas City, MO 64131

(816) 931-2600

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Balance Sheet

Assets

Flat

$10,606,466

Flat from 2019

Net Assets

Flat

$8,754,056

Flat from 2019

Liabilities

Flat

$1,852,410

Flat from 2019

Revenue And Expenses

Revenue

Flat

$6,759,603

Flat from 2019

Expenses

Flat

$8,169,957

Flat from 2019

Net Income

Flat

-$1,410,354

Flat from 2019

Historical Trend

Balance Sheet Trend

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

$40M$30M$20M$10M$0Assets 2011: $2,390,354Liabilities 2011: $716,250Net Assets 2011: $1,674,1042011Assets 2012: $2,409,330Liabilities 2012: $598,488Net Assets 2012: $1,810,8422012Assets 2013: $4,726,619Liabilities 2013: $332,038Net Assets 2013: $4,394,5812013Assets 2014: $5,023,924Liabilities 2014: $500,993Net Assets 2014: $4,522,9312014Assets 2015: $6,476,331Liabilities 2015: $941,887Net Assets 2015: $5,534,4442015Assets 2016: $5,695,290Liabilities 2016: $855,835Net Assets 2016: $4,839,4552016Assets 2017: $5,218,772Liabilities 2017: $503,054Net Assets 2017: $4,715,7182017Assets 2018: $11,398,154Liabilities 2018: $1,354,476Net Assets 2018: $10,043,6782018Assets 2019: $10,606,466Liabilities 2019: $1,852,410Net Assets 2019: $8,754,0562019Assets 2019: $10,606,466Liabilities 2019: $1,852,410Net Assets 2019: $8,754,0562019Assets 2020: $20,909,832Liabilities 2020: $3,109,449Net Assets 2020: $17,800,3832020Assets 2021: $25,693,539Liabilities 2021: $3,143,870Net Assets 2021: $22,549,6692021Assets 2022: $31,113,409Liabilities 2022: $620,624Net Assets 2022: $30,492,7852022Assets 2023: $33,103,416Liabilities 2023: $662,475Net Assets 2023: $32,440,9412023

Highlighted filing

2019

Assets$10,606,466
Liabilities$1,852,410
Net Assets$8,754,056
Open 2019 Filing

Operations Trend

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

$20M$15M$10M$5.0M$0-$5.0MExpenses 2011: $8,308,4962011Expenses 2012: $6,931,1072012Expenses 2013: $6,421,8062013Revenue 2014: $6,902,898Expenses 2014: $6,774,548Net Income 2014: $128,3502014Revenue 2015: $7,507,779Expenses 2015: $6,496,266Net Income 2015: $1,011,5132015Revenue 2016: $5,868,967Expenses 2016: $6,630,190Net Income 2016: -$761,2232016Revenue 2017: $5,788,558Expenses 2017: $6,120,336Net Income 2017: -$331,7782017Revenue 2018: $12,950,845Expenses 2018: $7,731,213Net Income 2018: $5,219,6322018Revenue 2019: $6,759,603Expenses 2019: $8,169,957Net Income 2019: -$1,410,3542019Revenue 2019: $6,759,603Expenses 2019: $8,169,957Net Income 2019: -$1,410,3542019Revenue 2020: $16,124,449Expenses 2020: $7,241,943Net Income 2020: $8,882,5062020Revenue 2021: $8,954,721Expenses 2021: $6,814,636Net Income 2021: $2,140,0852021Revenue 2022: $18,472,948Expenses 2022: $7,358,317Net Income 2022: $11,114,6312022Revenue 2023: $10,283,998Expenses 2023: $9,075,142Net Income 2023: $1,208,8562023

Highlighted filing

2019

Revenue$6,759,603
Expenses$8,169,957
Net Income-$1,410,354
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2018 to Jun 30, 2019
Signed
Mar 10, 2020
Return Version
2018v3.1
Gross Receipts
$8,160,246
Mission and Program Overview

Mission

We give hope. We fund research, advocate for patients, and build a community for all impacted by pkd.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$3,925,474$5,024,730▲ $1,099,256
Pledges and Grants Receivable$3,772,108$2,888,585▼ $883,523
Savings and Temporary Cash Investments$3,156,801$1,336,795▼ $1,820,006
Land, Buildings, and Equipment, Net$278,353$740,117▲ $461,764
Cash and Non-Interest-Bearing Accounts$228,084$560,278▲ $332,194
Accounts Receivable$12,287$26,148▲ $13,861
Prepaid Expenses and Deferred Charges$8,089$12,805▲ $4,716
Total Assets$11,398,154$10,606,466▼ $791,688
Other Assets Total$16,958$17,008▲ $50
Liabilities
Deferred Revenue$600,000$1,000,000▲ $400,000
Accounts Payable and Accrued Expenses$754,476$852,410▲ $97,934
Total Liabilities$1,354,476$1,852,410▲ $497,934
Net Assets / Fund Balance
Unrestricted Net Assets$3,917,718$4,517,567▲ $599,849
Temporarily Rstr Net Assets$5,125,960$3,236,489▼ $1,889,471
Permanently Rstr Net Assets$1,000,000$1,000,000→ $0
Total Net Assets Fund Balance$10,043,678$8,754,056▼ $1,289,622
Total Liabilities and Net Assets / Fund Balance$11,398,154$10,606,466▼ $791,688

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$671,541$244,681$916,222
Leasehold Improvements$68,576$780$69,356

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2018$4,079,744$409,814▲ $276,814$148,064$4,597,077
2017$2,960,433$1,021,831▲ $222,220$108,000$4,079,744
2016$2,773,007-▲ $310,566$108,000$2,960,433
2015-$2,700,000▲ $77,487-$2,773,007
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Andy BettsPresident & CEOFT$201,793$77,509$279,302
David BaronChief Scientific OfficerFT$187,450$54,321$241,771
Kenneth MclaughlinCOO - Left December 2018FT$90,917$84,338$175,255
Alexis DennyDirector of Govt AffairsFT$106,873$28,601$135,474
Susan DeremerDirector of Leadership GiftsFT$113,440$13,171$126,611
Robin Strachan - Left July 2019Planned Giving DirectorFT$103,943$9,801$113,744

Board Members and Trustees

NameTitle
Klee KleberChair
Beverly BensonVice-chair
Andrea KringsteinDirector
Ashley BrownDirector
Bill BrazellDirector
Craig RamseyerDirector
Dwight OdlandDirector
Fran ToweyDirector
Georgina HabermanDirector
Jerry WaxmanDirector
Katherine DellDirector
Michal MrugDirector
Michele KarlDirector
Rob RothDirector
Terry WatnickDirector
Paula HutchinsonSecretary
Brock NelsonTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Newport OneFundraising Service21 RAILROAD AVE, Duxbury, MA 02332, Uk$145,288
Iqvia Technology ServicesPatient Registry And Consulting Fees-$103,500
Revenue and Support

Revenue Composition

Contributions and Grants
$6,507,595
Program Service Revenue
$0
Investment Income
$217,531
Other Revenue
$34,477
All Other Contributions
$6,507,595
Change in Net Assets
$-1,410,354

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
Yes

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Other Non Cash Contri Table274$191,238Fair Market Value (FMV)
Securities Publicly Traded7$37,744Fair Value
Cars and Other Vehicles28$12,614Fair Value
Total Noncash Contributions309$241,596-

Audited Revenue Reconciliation

Revenue per Audited Statements
$6,738,373
Revenue Not Reported on Financial Statements
$21,230
Revenue Not Reported on Form 990
$492,742
Total Revenue per Audited Statements
$7,231,115
Total Revenue per Form 990
$6,759,603
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$3,127,659
Grants and Similar Amounts Paid$2,960,317
Other Expenses$1,944,168
Total Fundraising Expense$932,904
Professional Fundraising Fees$137,813

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$2,620,317--$2,620,317
Other Salaries and Wages$1,204,733$582,968$332,908$2,120,609
Fees for Services Other$609,081$51,189$27,349$687,619
Other Employee Benefits$191,854$91,147$55,030$338,031
Current Officers, Directors, Trustees, and Key Employees$167,640$30,481$106,679$304,800
Office Expenses$189,190$35,645$27,602$252,437
Conferences and Meetings$171,617$997$77,007$249,621
Foreign Grants$240,000--$240,000
Occupancy$127,526$40,500$30,203$198,229
Payroll Taxes$110,870$50,182$34,770$195,822
Pension Plan Contributions$95,712$46,725$25,960$168,397
Depreciation Depletion$81,519$37,980$26,827$146,326
Fees for Services Professional Fundraising--$137,813$137,813
Grants to Domestic Individuals$100,000--$100,000
Fees for Services Legal$69,534$5,125$16,537$91,196
Fees for Services Lobbying$58,899--$58,899
Information Technology$30,517$8,449$15,284$54,250
Other Expenses$16,743$24,152$8,755$49,650
Travel$40,010--$40,010
Fees for Services Accounting$25,962$1,914$6,174$34,050
Advertising$33,108--$33,108
Insurance$17,866$5,671$4,006$27,543
Fees for Service Investment Mgmnt Fees-$21,230-$21,230
Total Functional Expenses$6,202,698$1,034,355$932,904$8,169,957

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$8,520,737
Total Expenses per Form 990$8,169,957
Expenses per Audited Statements$8,148,727
Expenses Not Reported on Form 990$372,010
Expenses Not Reported on Financial Statements$21,230
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
BRIGHAM AND WOMEN'S HOSPITALBoston, MA501(c)(3)Elucidating the Cystogenic Proteome in Polycystic Kidney Disease$80,000
Cleveland Clinic FoundationCleveland, OH501(c)(3)Regulation of Ciliary G-protein Signaling by Polycystin-1$80,000
Johns Hopkins UniversityBaltimore, MD501(c)(3)Small Molecule Correctors Reduce Cyst Growth in Adpkd$80,000
Mayo ClinicMinneapolis, MN501(c)(3)The Roles of Dna Methylation in Autosomal Dominant Polycystic Kidney Disease$80,000
Medical University of South CarolinaCharleston, SCGovEffects of Dietary Salt Restriction on Cystogenesis in Arpkd$80,000
Northwestern University - Asrsp Cash ManagementEvanston, IL501(c)(3)The Molecular and Mechanistic Impacts of Finger 1 Variants on Pkd2 Ion Channel Function in the Primary Cilia.$80,000
President and Fellows of Harvard CollegeBoston, MA501(c)(3)TAKING PKD OUT OF THE KIDNEY: DISSECTION OF POLYCYSTIN SIGNALING IN A NOVEL CELL-BASED SYSTEM$80,000
Regents of University of ColoradoDenver, CO501(c)(3)UNDERSTANDING THE ROLE OF CD8+ T-CELLS IN HALTING RENAL CYSTOGENESIS$80,000
Regents of the University of CaliforniaLos Angeles, CA501(c)(3)Understanding How the Ciliary Transition Zone Controls Polycystin-2 Localization to Cilia$80,000
ST JOHN'S UNIVERSITYQueens, NY501(c)(3)The Role of Polycystin-1 in the Polycystin-1/polycystin-2 Ion Channel Complex$80,000
THE CHILDREN'S MERCY HOSPITALKansas City, MO501(c)(3)Molecular Characterization of Cyst Formation in a Porcine Model of Early Adpkd$80,000
Univ of Ks Medical Center Research Institute IncKansas City, KS501(c)(3)Mechanism of Polycystin-1-regulated G Protein Signaling and Its Role in the Pathogenesis and Treatment of Pkd$80,000
University of Alabama at BirminghamBirmingham, AL501(c)(3)Kidney Specific Drug Delivery Using Nanoparticles in Pkd1 Mice$80,000
University of Kansas Medical SchoolKansas City, MO501(c)(3)Pre-clinical Evaluation of Caspase 1 as a Therapeutic Target in Adpkd.$80,000
University of MarylandBaltimore, MD501(c)(3)POLYCYSTIN-1 CLEAVAGE PRODUCT P100: DISTINCTIVE TOPOLOGY, SPECIFIC PROPERTIES, AND POLYCYSTIN-2-ASSOCIATED CHANNEL ACTIVITY$80,000
University of Maryland BaltimoreBaltimore, MDGovDisruption of the Apical Junctional Complex in Cystogenesis and Adpkd$80,000
University of Maryland School of MedicineBaltimore, MD501(c)(3)Bac Transgenesis to Model an Aneurysm-associated Human Mutation in Mice$80,000
Yale UniversityNew Haven, CT501(c)(3)Genetic Approach to Define Mediators of Polycystin-1 Function in Polycystic Kidney Disease$80,000
Yale UniversityGlastonbury, CT501(c)(3)Controlling the Viability of Pkd Mutant Cells Via Inactivation of Xbp1 as a Novel Strategy to Treat Adpkd$80,000
Yale UniversityNew Haven, CT501(c)(3)Role of Interstitial Cells in Renal Cystogenesis$80,000
Mayo ClinicMinneapolis, MN501(c)(3)Restoring Ciliary Level of Functional Polycystins as a Novel Therapeutic Approach for Adpkd Treatment$60,000
University of MarylandBaltimore, MD501(c)(3)RELIEVING THE STRESS OF PKD: A NEW ROLE OF PKHD1 IN DETOXIFICATION MEDIATED VIA DIFFERENTIAL CLEAVAGE OF THE INTRACELLULAR DOMAIN$60,000
University of Texas Southwestern Medical CenterIrving, TX501(c)(3)Investigating the M6a Rna Methylation Pathway as a Therapeutic Option for Adpkd Treatment$60,000
Ut Southwestern Medical CenterDallas, TX501(c)(3)Role of Tulp3-mediated Ciliary Protein Trafficking in Kidney Cystogenesis$60,000
Yale UniversityNew Haven, CT501(c)(3)TARGETING THE CELL CYCLE AS A POTENTIAL TREATMENT FOR ADPKD: THE ROLE OF CYCLIN-DEPENDENT KINASE 1$60,000
Kumc Kidney InstituteFairway, KS501(c)(3)Targeting the Lkb1-ampk Signaling Pathway in Polycystic Kidney Disease$50,000
University of ColoradoDenver, CO501(c)(3)Pkd Gene Therapy Targeting the 4e-bp1 Pathway$50,000
Yale UniversityNew Haven, CT501(c)(3)Genetic Variants Predisposing to Intracranial Aneurysm Formation in Adpkd$50,000
Mayo ClinicMinneapolis, MN501(c)(3)Adpkd Mutation Database$40,000

International Summary

Offices
0
Employees
0
Spending
$200,000

International Compliance

Foreign grant records maintained
No
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
East Asia & the PacificGrants to Recipients Located in the RegionN/a00$120,000
Europe (including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumGrants to Recipients Located in the RegionN/a00$80,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
Yes

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$137,813
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
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
No
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 prepared by an independent accounting firm. Prior to filing the form 990 for pkd foundation, a draft copy will be provided to the board of trustees for review and comment. Any comments will be accumulated by management and addressed accordingly prior to filing with the irs.”

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

“Members of the board of trustees of pkd foundation are required to sign an annual statement disclosing any conflicts of interest. The governance committee reviews the statements and ensures that board members are prohibited from participating in discussions or decisions related to transactions that involve actual conflicts of interest.”

Form 990, Part VI, Section B, Line 15

“Annually, the chairman of the board of trustees works with the ceo to develop the ceo's goals for the new fiscal year. At the end of each fiscal year, the executive committee evaluates the ceo against these goals and recommends to the board the ceo's compensation package for approval, based on this evaluation. The ceo's compensation was last reviewed in 2018.”

Form 990, Part VI, Section C, Line 19

“The organization makes its governing documents, conflict of interest policy and financial statements available to the public on their own website and upon request.”

FORM 990, PART VII, SECTION A, LINE 1:

“Pkd foundation contracts with adp totalsource to provide certain employee benefits and payroll services. Employees are considered to be jointly employed by both pkd foundation and adp totalsource. In order to comply with transparency directives as a part of the form 990, the foundation has decided to report compensation in part vii to include amounts paid and reported on w-2's by adp totalsource.”

Filing and Contact Details

Filer

Filer Name
Pkd Foundation
EIN
43-1266906
Phone
8169312600
Address
1001 E 101ST TER NO 220, KANSAS CITY, MO 64131

Signing Officer

Name
Andy Betts
Title
Chief Executive Officer
Phone
8169312600
Signed
2020-03-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Andy Betts
Formed
1982
Legal Domicile
Mo
Voting Board Members
17
Independent Board Members
17
Employees
45
Volunteers
3,593

Preparer

Firm
Cliftonlarsonallen Llp
Address
801 FELIX STREET, ST JOSEPH, MO 64501
Preparer
Harold Ray CPA
Phone
8162328441
Supplemental Narrative

Additional Explanations

FORM 990, PART XII, LINE 2C:

“No change from the prior year.”

Financial Statement Notes

PART V, LINE 4:

“The purpose of the research opportunity fund and named endowments (collectively referred to as "endowments") is to provide for growth-oriented long-term investment of funds that are not needed to meet the day-to-day financial obligations of the foundation.”

PART X, LINE 2:

“The foundation is exempt from income taxes under section 501(c)(3) of the u.s. Internal revenue code. The foundation does not operate as a private foundation. Although it is exempt from federal and state income taxes on its principal operations, the foundation is subject to federal income taxes on the net income from any operations identified by the internal revenue service to generate unrelated business income. No such unrelated business income tax was incurred during 2019 or 2018. The foundation follows the standards for evaluating uncertain tax positions and has determined no liability should be recorded for uncertain tax positions.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Cost of goods sold for merchandise sales 226.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Cost of goods sold for merchandise sales 226.”

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IRS990/Desc0RESEARCH:SINCE ITS FOUNDING IN 1982, THE PKD FOUNDATION HAS INVESTED MORE THAN $50 MILLION IN MORE THAN 1,300 RESEARCH, CLINICAL AND SCIENTIFIC GRANTS, FELLOWSHIPS AND SCIENTIFIC MEETINGS. THE FOUNDATION'S FINANCIAL COMMITMENT OVER THE YEARS HAS SEEN RESULTS ON A LOCAL AND EVEN GLOBAL LEVEL, INCLUDING INITIATING FUNDING FOR YOUNG INVESTIGATORS FROM AROUND THE WORLD; SUPPORTING INNOVATIVE RESEARCH IDEAS; AND PROVIDING BRIDGE FUNDING TO RESEARCHERS WORLD-WIDE TO APPLY FOR LARGER NATIONAL INSTITUTES OF HEALTH (NIH) GRANTS. THE FOUNDATION'S FISCAL YEAR INVESTMENTS IN RESEARCH IS OUTLINED BELOW.RESEARCH GRANTS: INVESTED $1,800,000 ON GRANT FUNDING TO 23 PKD PROJECTS THAT FOCUS ON RISK FACTORS FOR PKD MANIFESTATIONS, BETTER UNDERSTANDING OF CELLULAR MECHANISMS THAT ACCELERATE PROGRESSION AND IDENTIFYING TARGETS FOR PKD. THE FOUNDATION ALSO COMMITTED TO FUNDING ONE JUNIOR INVESTIGATOR WITH A THREE-YEAR COMMITMENT THROUGH THE YOUNG INVESTIGATOR AWARD.FELLOWSHIPS: PROVIDED $450,000 IN FELLOWSHIP FUNDING TO 5 SUPPORT TRAINEES IN OBTAINING RESEARCH EXPERIENCE AS THEY INITIATE CAREERS IN PKD.CORE GRANTS: INVESTED $40,000 TO SUPPORT CORE RESEARCH GRANTS SERVICES AND RESOURCES FOR PKD SCIENTISTS IN A PROMINENT GENETIC LAB SO THAT FOUNDATION DOLLARS CAN BE LEVERAGED ACROSS THE PKD RESEARCH COMMUNITY. ADPKD REGISTRY: LED THE DEVELOPMENT AND IMPLEMENTATION OF THE NATION'S FIRST ADPKD PATIENT REGISTRY TO COLLECT VALUABLE DATA ABOUT THE PKD EXPERIENCE DIRECTLY FROM PATIENTS AND SUPPORT THE RECRUITMENT OF PARTICIPANTS FOR CLINICAL STUDIES.
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IRS990/ExpenseAmt03757904
IRS990/FamilyOrBusinessRlnInd00
IRS990/FederalGrantAuditRequiredInd00
IRS990/FeesForServicesAccountingGrp/FundraisingAmt06174
IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt01914
IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt025962
IRS990/FeesForServicesAccountingGrp/TotalAmt034050
IRS990/FeesForServicesLegalGrp/FundraisingAmt016537
IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt05125
IRS990/FeesForServicesLegalGrp/ProgramServicesAmt069534
IRS990/FeesForServicesLegalGrp/TotalAmt091196
IRS990/FeesForServicesLobbyingGrp/ProgramServicesAmt058899
IRS990/FeesForServicesLobbyingGrp/TotalAmt058899
IRS990/FeesForServicesOtherGrp/FundraisingAmt027349
IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt051189
IRS990/FeesForServicesOtherGrp/ProgramServicesAmt0609081
IRS990/FeesForServicesOtherGrp/TotalAmt0687619
IRS990/FeesForServicesProfFundraising/FundraisingAmt0137813
IRS990/FeesForServicesProfFundraising/TotalAmt0137813
IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt021230
IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt021230
IRS990/ForeignActivitiesInd01
IRS990/ForeignFinancialAccountInd00
IRS990/ForeignGrantsGrp/ProgramServicesAmt0240000
IRS990/ForeignGrantsGrp/TotalAmt0240000
IRS990/ForeignOfficeInd00
IRS990/Form1098CFiledInd00
IRS990/Form8282PropertyDisposedOfInd00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt02.00
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IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt41.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt51.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt61.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt71.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt81.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt91.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt101.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt111.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt121.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt131.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt141.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt151.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt161.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1740.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1840.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1940.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt2040.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt2140.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt2240.00
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IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd1X
IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd2X
IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd3X
IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd4X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd0X
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IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd2X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd3X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd4X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd5X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd6X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd7X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd8X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd9X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd10X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd11X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd12X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd13X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd14X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd15X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd16X
IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
IRS990/Form990PartVIISectionAGrp/OfficerInd2X
IRS990/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OfficerInd4X
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt00
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt10
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt70
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt80
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt110
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt120
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt130
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt140
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt150
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt160
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1743959
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1835601
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt1935926
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2028601
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt2113171
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt229801
IRS990/Form990PartVIISectionAGrp/PersonNm0KLEE KLEBER
IRS990/Form990PartVIISectionAGrp/PersonNm1BEVERLY BENSON
IRS990/Form990PartVIISectionAGrp/PersonNm2BROCK NELSON
IRS990/Form990PartVIISectionAGrp/PersonNm3PAULA HUTCHINSON
IRS990/Form990PartVIISectionAGrp/PersonNm4BILL BRAZELL
IRS990/Form990PartVIISectionAGrp/PersonNm5ASHLEY BROWN
IRS990/Form990PartVIISectionAGrp/PersonNm6KATHERINE DELL
IRS990/Form990PartVIISectionAGrp/PersonNm7GEORGINA HABERMAN
IRS990/Form990PartVIISectionAGrp/PersonNm8MICHELE KARL
IRS990/Form990PartVIISectionAGrp/PersonNm9ANDREA KRINGSTEIN
IRS990/Form990PartVIISectionAGrp/PersonNm10MICHAL MRUG
IRS990/Form990PartVIISectionAGrp/PersonNm11DWIGHT ODLAND
IRS990/Form990PartVIISectionAGrp/PersonNm12CRAIG RAMSEYER
IRS990/Form990PartVIISectionAGrp/PersonNm13ROB ROTH
IRS990/Form990PartVIISectionAGrp/PersonNm14FRAN TOWEY
IRS990/Form990PartVIISectionAGrp/PersonNm15TERRY WATNICK
IRS990/Form990PartVIISectionAGrp/PersonNm16JERRY WAXMAN
IRS990/Form990PartVIISectionAGrp/PersonNm17ANDY BETTS
IRS990/Form990PartVIISectionAGrp/PersonNm18DAVID BARON
IRS990/Form990PartVIISectionAGrp/PersonNm19KENNETH MCLAUGHLIN
IRS990/Form990PartVIISectionAGrp/PersonNm20ALEXIS DENNY
IRS990/Form990PartVIISectionAGrp/PersonNm21SUSAN DEREMER
IRS990/Form990PartVIISectionAGrp/PersonNm22ROBIN STRACHAN - LEFT JULY 2019
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt120
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt130
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt140
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt150
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt160
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt17235343
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt18206170
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt19139329
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20106873
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt21113440
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt22103943
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt100
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt110
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt120
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt130
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt140
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt150
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt160
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt170
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt180
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt190
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt200
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt210
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt220
IRS990/Form990PartVIISectionAGrp/TitleTxt0CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE-CHAIR
IRS990/Form990PartVIISectionAGrp/TitleTxt2TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt3SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt4DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt5DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt6DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt7DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt8DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt9DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt11DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt12DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt13DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt14DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt15DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt16DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt17PRESIDENT & CEO
IRS990/Form990PartVIISectionAGrp/TitleTxt18CHIEF SCIENTIFIC OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt19COO - LEFT DECEMBER 2018
IRS990/Form990PartVIISectionAGrp/TitleTxt20DIRECTOR OF GOVT AFFAIRS
IRS990/Form990PartVIISectionAGrp/TitleTxt21DIRECTOR OF LEADERSHIP GIFTS
IRS990/Form990PartVIISectionAGrp/TitleTxt22PLANNED GIVING DIRECTOR
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01982
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd00
IRS990/GainOrLossGrp/SecuritiesAmt071843
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt017
IRS990/GrantAmt02637311
IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt0100000
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt0100000
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt02620317
IRS990/GrantsToDomesticOrgsGrp/TotalAmt02620317
IRS990/GrantsToIndividualsInd01
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt01469294
IRS990/GrossReceiptsAmt08160246
IRS990/GrossSalesOfInventoryAmt02256
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd01
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt017
IRS990/IndivRcvdGreaterThan100KCnt06
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartIIIInd0X
IRS990/InfoInScheduleOPartVIIInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt015284
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt08449
IRS990/InformationTechnologyGrp/ProgramServicesAmt030517
IRS990/InformationTechnologyGrp/TotalAmt054250
IRS990/InsuranceGrp/FundraisingAmt04006
IRS990/InsuranceGrp/ManagementAndGeneralAmt05671
IRS990/InsuranceGrp/ProgramServicesAmt017866
IRS990/InsuranceGrp/TotalAmt027543
IRS990/InvestmentIncomeGrp/ExclusionAmt0145688
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt0145688
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt03925474
IRS990/InvestmentsPubTradedSecGrp/EOYAmt05024730
IRS990/IRPDocumentCnt021
IRS990/IRPDocumentW2GCnt00
IRS990/JointCostsInd0X
IRS990/LandBldgEquipAccumDeprecAmt0245461
IRS990/LandBldgEquipBasisNetGrp/BOYAmt0278353
IRS990/LandBldgEquipBasisNetGrp/EOYAmt0740117
IRS990/LandBldgEquipCostOrOtherBssAmt0985578
IRS990/LegalDomicileStateCd0MO
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt01397451
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd01
IRS990/LocalChaptersInd01
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0PROMOTE PROGRAMS OF RESEARCH, ADVOCACY, EDUCATION, SUPPORT AND AWARENESS IN ORDER TO DISCOVER TREATMENTS AND A CURE FOR POLYCYSTIC KIDNEY DISEASE AND IMPROVE THE LIVES OF ALL IT AFFECTS.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt010043678
IRS990/NetAssetsOrFundBalancesEOYAmt08754056
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt071843
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt071843
IRS990/NetIncomeOrLossGrp/RelatedOrExemptFuncIncomeAmt0-936
IRS990/NetIncomeOrLossGrp/TotalRevenueColumnAmt0-936
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0120732
IRS990/NoncashContributionsAmt0241596
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt030203
IRS990/OccupancyGrp/ManagementAndGeneralAmt040500
IRS990/OccupancyGrp/ProgramServicesAmt0127526
IRS990/OccupancyGrp/TotalAmt0198229
IRS990/OfficeExpensesGrp/FundraisingAmt027602
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt035645
IRS990/OfficeExpensesGrp/ProgramServicesAmt0189190
IRS990/OfficeExpensesGrp/TotalAmt0252437
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt016958
IRS990/OtherAssetsTotalGrp/EOYAmt017008
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt055030
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt091147
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt0191854
IRS990/OtherEmployeeBenefitsGrp/TotalAmt0338031
IRS990/OtherExpensesGrp/Desc0DUES, FEES, MEMBERSHIPS
IRS990/OtherExpensesGrp/FundraisingAmt08755
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt024152
IRS990/OtherExpensesGrp/ProgramServicesAmt016743
IRS990/OtherExpensesGrp/TotalAmt049650
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/Desc0INSURANCE PROCEEDS
IRS990/OtherRevenueMiscGrp/Desc1MISCELLANEOUS INCOME
IRS990/OtherRevenueMiscGrp/ExclusionAmt035000
IRS990/OtherRevenueMiscGrp/ExclusionAmt1413
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt035000
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt1413
IRS990/OtherRevenueTotalAmt035413
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt0332908
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt0582968
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt01204733
IRS990/OtherSalariesAndWagesGrp/TotalAmt02120609
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt034770
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt050182
IRS990/PayrollTaxesGrp/ProgramServicesAmt0110870
IRS990/PayrollTaxesGrp/TotalAmt0195822
IRS990/PensionPlanContributionsGrp/FundraisingAmt025960

Document Assets

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Filings

Displayed year

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

Open filing
Assets
$10,606,466
Liabilities
$1,852,410
Net assets
$8,754,056
Revenue
$6,759,603
Expenses
$8,169,957
Net income
-$1,410,354
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2023Summary only. Only limited summary data is available for this year.$33.1$0.66$32.4$10.3$9.08$1.21
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$31.1$0.62$30.5$18.5$7.36$11.1
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$25.7$3.14$22.5$8.95$6.81$2.14
2020Summary only. Only limited summary data is available for this year.$20.9$3.11$17.8$16.1$7.24$8.88
2019Detailed filing. Detailed filing data is available for this year.$10.6$1.85$8.75$6.76$8.17$1.41
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$10.6$1.85$8.75$6.76$8.17$1.41
2018Facts available. Structured filing facts are available, but richer extracted sections are limited.$11.4$1.35$10.0$13.0$7.73$5.22
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.22$0.50$4.72$5.79$6.12$0.33
2016Detailed filing. Detailed filing data is available for this year.$5.70$0.86$4.84$5.87$6.63$0.76
2015Summary only. Only limited summary data is available for this year.$6.48$0.94$5.53$7.51$6.50$1.01
2014Detailed filing. Detailed filing data is available for this year.$5.02$0.50$4.52$6.90$6.77$0.13
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.73$0.33$4.39$6.42
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.41$0.60$1.81$6.93
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.39$0.72$1.67$8.31