Civic Intelligence

The Marfan Foundation Inc.

990 • Fiscal year 2018 • EIN 52-1265361

Jul 01, 2017 to Jun 30, 2018 • Filed on Oct 30, 2018

Organization ProfileWWW.MARFAN.ORG

View Organization Page

22 Manhasset AvenuePort Washington, NY 11050-2023

(516) 883-8712

Siviq Scores

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

Liabilities / Assets

22nd percentile

0.03x

Higher debt load relative to assets than 22% of similar nonprofits.

2018 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2018

Liabilities / Revenue

29th percentile

0.10x

Higher debt load relative to revenue than 29% of similar nonprofits.

2018 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2018

Net Margin

9th percentile

-23%

Higher net margin than 9% of similar nonprofits.

2018 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2018

Top Officer Pay

86th percentile

$396,298

Higher top officer pay than 86% of similar nonprofits.

Top officer pay equals 9.1% of source-year revenue.

2018 filings • 501(c)3 • $10M-$25M nonprofits • Source year 2018

Asset Growth

17th percentile

-6.2%

Faster asset growth than 17% of similar nonprofits.

2018 filings • 501(c)3 • $10M-$25M nonprofits • Annualized from 2017 to 2018

Revenue Growth

5th percentile

-48%

Faster revenue growth than 5% of similar nonprofits.

2018 filings • 501(c)3 • $10M-$25M nonprofits • Annualized from 2017 to 2018

Balance Sheet
Liabilities / Assets22nd percentile

Assets

Down

$12,637,785

Down $829,124 (-6.2%) from 2017

Net Assets

Down

$12,217,706

Down $833,789 (-6.4%) from 2017

Liabilities

Up

$420,079

Up $4,665 (+1.1%) from 2017

Revenue And Expenses
Liabilities / Revenue29th percentileNet Margin9th percentile

Revenue

Down

$4,353,700

Down $3,967,503 (-48%) from 2017

Expenses

Up

$5,374,588

Up $908,920 (+20%) from 2017

Net Income

Down

-$1,020,888

Down $4,876,423 (-126%) from 2017

Historical Trend

Balance Sheet Trend

Asset Growth17th percentile

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

$20M$15M$10M$5.0M$0Assets 2011: $9,856,282Liabilities 2011: $452,405Net Assets 2011: $9,403,8772011Assets 2012: $13,407,551Liabilities 2012: $423,875Net Assets 2012: $12,983,6762012Assets 2013: $12,493,339Liabilities 2013: $556,162Net Assets 2013: $11,937,1772013Assets 2014: $11,524,820Liabilities 2014: $526,504Net Assets 2014: $10,998,3162014Assets 2015: $10,608,212Liabilities 2015: $488,097Net Assets 2015: $10,120,1152015Assets 2016: $9,314,476Liabilities 2016: $313,986Net Assets 2016: $9,000,4902016Assets 2017: $13,466,909Liabilities 2017: $415,414Net Assets 2017: $13,051,4952017Assets 2018: $12,637,785Liabilities 2018: $420,079Net Assets 2018: $12,217,7062018Assets 2019: $12,076,553Liabilities 2019: $484,444Net Assets 2019: $11,592,1092019Assets 2020: $11,146,771Liabilities 2020: $2,058,328Net Assets 2020: $9,088,4432020Assets 2021: $12,467,539Liabilities 2021: $1,676,488Net Assets 2021: $10,791,0512021Assets 2022: $16,600,923Liabilities 2022: $1,508,775Net Assets 2022: $15,092,1482022Assets 2023: $18,561,612Liabilities 2023: $1,718,116Net Assets 2023: $16,843,4962023Assets 2024: $18,118,070Liabilities 2024: $1,860,516Net Assets 2024: $16,257,5542024Assets 2025: $19,547,558Liabilities 2025: $2,672,468Net Assets 2025: $16,875,0902025

Highlighted filing

2018

Assets$12,637,785
Liabilities$420,079
Net Assets$12,217,706
Open 2018 Filing

Operations Trend

Revenue Growth5th percentile

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

$10M$5.0M$0-$5.0MExpenses 2011: $3,586,3552011Expenses 2012: $4,000,9392012Revenue 2013: $2,854,100Expenses 2013: $3,841,998Net Income 2013: -$987,8982013Revenue 2014: $3,048,384Expenses 2014: $4,036,732Net Income 2014: -$988,3482014Revenue 2015: $3,548,689Expenses 2015: $4,438,348Net Income 2015: -$889,6592015Revenue 2016: $3,519,660Expenses 2016: $4,644,297Net Income 2016: -$1,124,6372016Revenue 2017: $8,321,203Expenses 2017: $4,465,668Net Income 2017: $3,855,5352017Revenue 2018: $4,353,700Expenses 2018: $5,374,588Net Income 2018: -$1,020,8882018Revenue 2019: $4,704,278Expenses 2019: $5,465,717Net Income 2019: -$761,4392019Revenue 2020: $3,889,456Expenses 2020: $6,171,617Net Income 2020: -$2,282,1612020Revenue 2021: $4,898,166Expenses 2021: $4,891,164Net Income 2021: $7,0022021Revenue 2022: $9,814,628Expenses 2022: $4,705,271Net Income 2022: $5,109,3572022Revenue 2023: $8,195,380Expenses 2023: $6,758,497Net Income 2023: $1,436,8832023Revenue 2024: $5,486,020Expenses 2024: $6,646,776Net Income 2024: -$1,160,7562024Revenue 2025: $7,780,692Expenses 2025: $7,566,004Net Income 2025: $214,6882025

Highlighted filing

2018

Revenue$4,353,700
Expenses$5,374,588
Net Income-$1,020,888
Open 2018 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2017 to Jun 30, 2018
Signed
Oct 30, 2018
Return Version
2017v2.3
Gross Receipts
$7,059,496
Mission and Program Overview

Mission

The marfan foundation creates a brighter future for everyone affected by marfan syndrome and related conditions. The foundation works tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness.

The marfan foundation creates a brighter future for everyone affected by marfan syndrome and related conditions. We pursue the most innovative research and make sure that it receives proper funding. We inform the public and educate the patient community to increase early diagnosis and ensure life-saving treatment. We provide relentless support to families, caregivers, and healthcare providers. We will not rest until we have achieved victory in a world in which everyone with marfan syndrome or a related condition receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$6,983,908$6,438,849▼ $545,059
Pledges and Grants Receivable$4,065,160$3,373,109▼ $692,051
Savings and Temporary Cash Investments$379,828$777,604▲ $397,776
Land, Buildings, and Equipment, Net$660,404$730,146▲ $69,742
Prepaid Expenses and Deferred Charges$161,479$148,266▼ $13,213
Investments Other Securities$54,706$80,600▲ $25,894
Accounts Receivable$61,872$23,165▼ $38,707
Cash and Non-Interest-Bearing Accounts$79,215$150▼ $79,065
Total Assets$13,466,909$12,637,785▼ $829,124
Other Assets Total$1,020,337$1,065,896▲ $45,559
Liabilities
Accounts Payable and Accrued Expenses$247,343$237,353▼ $9,990
Deferred Revenue$113,365$102,126▼ $11,239
Other Liabilities$54,706$80,600▲ $25,894
Total Liabilities$415,414$420,079▲ $4,665
Net Assets / Fund Balance
Temporarily Rstr Net Assets$8,940,461$8,055,682▼ $884,779
Unrestricted Net Assets$4,111,034$4,162,024▲ $50,990
Total Net Assets Fund Balance$13,051,495$12,217,706▼ $833,789
Total Liabilities and Net Assets / Fund Balance$13,466,909$12,637,785▼ $829,124

Asset Categories

AssetBook ValueDepreciationBasis
Buildings$585,261$320,458$905,719
Equipment$36,958$437,950$474,908
Land$107,927-$107,927
Other Assets Org$1,065,896--

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2017$2,165,752-▲ $54,524$500,000$1,720,276
2016$2,006,110-▲ $159,737-$2,165,752
2015$1,915,019-▲ $91,241-$2,006,110
2014$1,909,351-▲ $5,818-$1,915,019
2013$1,902,063-▲ $7,438-$1,909,351
Compensation and Service Providers
Top Officer Pay86th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Michael L WeamerPresident/CEOFT$361,209$35,089$396,298
Helaine BaruchChief Development OfficerFT$210,275$20,076$230,351
Judith GibaldiCFO/COOFT$181,144$28,818$209,962
Josephine GrimaChief Science OfficerFT$154,615$5,919$160,534
Eileen J MascialeChief Program OfficerFT$116,037$4,452$120,489
Inderjeet KaurDirector of FinanceFT$102,769$4,034$106,803

Board Members and Trustees

NameTitle
Karen MurrayChair
Cory EavesVice Chair
Alan Braverman MdDirector
Alix Mclean JenningsDirector
Benjamin WeismanDirector
Bert MedinaDirector
Beth UtzDirector
Emily P WheelerDirector
Jeffrey C LesageDirector
Kathleen Mimnagh MdDirector
Marylynn Ireland PhdDirector
Maya Brown-zimmermanDirector
Patricia Mccabe EstradaDirector
Sinclair LiDirector
Jerry LermanSecretary
Caryn Kauffman CPATreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,987,438
Program Service Revenue
$199,810
Investment Income
$166,452
Other Revenue
$0
All Other Contributions
$2,032,415
Change in Net Assets
$-1,020,888

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
Securities Publicly Traded8$129,919Fair Market Value (FMV)
Total Noncash Contributions8$129,919-

Audited Revenue Reconciliation

Revenue per Audited Statements
$4,353,700
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$510,207
Total Revenue per Audited Statements
$4,863,907
Total Revenue per Form 990
$4,353,700
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$2,733,411
Other Expenses$1,504,334
Grants and Similar Amounts Paid$1,132,843
Total Fundraising Expense$629,179
Professional Fundraising Fees$4,000

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$1,202,949$229,778$296,726$1,729,453
Grants to Domestic Orgs$992,341--$992,341
Current Officers, Directors, Trustees, and Key Employees$500,338$112,013$20,141$632,492
Travel$308,259$7,903$74,669$390,831
Conferences and Meetings$252,832-$10,753$263,585
Office Expenses$146,285$20,072$53,162$219,519
Other Employee Benefits$147,361$30,853$31,572$209,786
Advertising$106,323$295$71,221$177,839
Payroll Taxes$114,701$24,334$22,645$161,680
Information Technology$114,260$2,777$6,163$123,200
Fees for Services Other$106,195$135$11,622$117,952
Foreign Grants$98,550--$98,550
Occupancy$43,251$8,234$8,241$59,726
Grants to Domestic Individuals$41,952--$41,952
Depreciation Depletion$22,416$7,472$7,472$37,360
Fees for Services Legal-$28,600-$28,600
Fees for Services Lobbying$22,198--$22,198
Insurance$3,009$1,003$1,003$5,015
Fees for Services Professional Fundraising--$4,000$4,000
Other Expenses$-736$1,289$6,770$-736
Total Functional Expenses$4,268,543$476,866$629,179$5,374,588

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$5,697,696
Expenses per Audited Statements$5,374,588
Total Expenses per Form 990$5,374,588
Expenses Not Reported on Form 990$323,108
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Johns Hopkins School of MedicineBaltimore, MD501(c)(3)Research$338,650
Washington UniversitySt Louis, MO501(c)(3)Research$100,300
Baylor College of MedicineHouston, TX501(c)(3)Research$61,270
Board of Trustees of the Leland Standford Junior UniversityPalo Alto, CA501(c)(3)Research$50,000
Cleveland Clinic FoundationCleveland, OH501(c)(3)Research$50,000
Massachusetts GeneralBoston, MD501(c)(3)Research$50,000
Emory UniversityAtlanta, GA501(c)(3)Research$41,792
Mayo Clinic RochesterRochester, MA501(c)(3)Research$39,900
Trustees of the University of PennsylvaniaPhiladelphia, PA501(c)(3)Research$39,550
Boston UniversityBoston, MA501(c)(3)Research$37,500
Duke UniversityDurham, NC501(c)(3)Research$37,500
The Board of Regents of the University of Wisconsin SystemMadison, WI501(c)(3)Research$37,500
Nyu School of MedicineNew York, NY501(c)(3)Research$26,404
Weill Medical College of Cornell UniversityNew York, NY501(c)(3)Research$26,150
Icahn School of Medicine of Mount SinaiNew York, NY501(c)(3)Research$25,000
The Arnold P Gold FoundationNew York, NY501(c)(3)Research$15,000
Case Western Reserve UniversityCleveland, OH501(c)(3)Research$8,208

International Summary

Offices
0
Employees
0
Spending
$98,550

International Compliance

Foreign grant records maintained
Yes
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
North AmericaGrant to RecipientResearch00$50,000
EuropeGrant to RecipientResearch00$48,550
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$411,134
Fundraising Gross Income$411,134
Professional Fundraising Fees$4,000

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Nyc Gala$1,105,742$207,383$19,770$187,613
St. Louis Gala$325,376$53,208$2,648$50,560
Total Events$2,366,157$411,134$411,134$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Other Payables$80,600
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
Yes
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 990 was reviewed by the board of directors before filing.”

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

“All officers, directors and key employees are required to complete a conflict of interest form annually which includes disclosure of possible conflicts of interest. These documents are maintained at the organization's headquarters. Any potential conflicts of interest are disclosed to the board. Officers and directors are required to abstain from any vote which has a potential conflict of interest.”

Form 990, Part VI, Section B, Line 15

“The executive committee conducts an annual performance review of the president/ceo which includes direct feedback from members of the board. An executive session is conducted as part of the review and an executive session is also conducted with the board reporting the results and any change in compensation consideration. Compensation surveys are also referenced in determining salaries across the organization.”

Form 990, Part VI, Section C, Line 19

“The governing documents, conflict of interest policy and audited financial statements are all available upon request. In addition the audited financial statements and the form 990 are available to the public on the organization's website, www.marfan.org.”

Filing and Contact Details

Filer

Filer Name
The Marfan Foundation Inc
EIN
52-1265361
Phone
5168838712
Address
22 MANHASSET AVENUE, PORT WASHINGTON, NY 11050-2023

Signing Officer

Name
Michael L Weamer
Title
President and CEO
Phone
5168838712
Signed
2018-10-30
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Michael L Weamer
Formed
1981
Legal Domicile
Md
Voting Board Members
16
Independent Board Members
16
Employees
26
Volunteers
199

Preparer

Firm
Baker Tilly Virchow Krause Llp
Address
125 BAYLIS ROAD SUITE 300, MELVILLE, NY 11747
Preparer
Ellen M Labita CPA
Phone
6317527400
Supplemental Narrative

Additional Explanations

FORM 990, PART XI, LINE 9:

“Change in fmv of charitable remainder trust 45,559.”

Financial Statement Notes

PART V, LINE 4:

“Intended uses of the organization's endowment funds: reserve fund - to provide an emergency fund equal to 50% of the program and operations budget in order to safeguard organization in the event of economic difficulties.”

PART X, LINE 2:

“Management has evaluated the foundation's tax positions and concluded that the foundation has not taken any uncertain tax positions that require adjustment to the financial statements to comply with the provisions of financial accounting standards board ("fasb") accounting standards codification ("asc") no. 740.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Change in fmv of charitable remainder trust 45,559.”

Raw XML AppendixShowing 400 of 1,043 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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IRS990/ActivityOrMissionDesc0THE MARFAN FOUNDATION CREATES A BRIGHTER FUTURE FOR EVERYONE AFFECTED BY MARFAN SYNDROME AND RELATED CONDITIONS. WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. WE INFORM THE PUBLIC AND EDUCATE THE PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. WE PROVIDE RELENTLESS SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS. WE WILL NOT REST UNTIL WE HAVE ACHIEVED VICTORY IN A WORLD IN WHICH EVERYONE WITH MARFAN SYNDROME OR A RELATED CONDITION RECEIVES A PROPER DIAGNOSIS, GETS THE NECESSARY TREATMENT, AND LIVES A LONG AND FULL LIFE.
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IRS990/Form990PartVIISectionAGrp/PersonNm7MARYLYNN IRELAND PHD
IRS990/Form990PartVIISectionAGrp/PersonNm8ALIX MCLEAN JENNINGS
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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
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IRS990/Form990PartVIISectionAGrp/TitleTxt17CFO/COO
IRS990/Form990PartVIISectionAGrp/TitleTxt18CHIEF DEVELOPMENT OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt19CHIEF SCIENCE OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt20CHIEF PROGRAM OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt21DIRECTOR OF FINANCE
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IRS990/FSAuditedInd01
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IRS990/MinutesOfCommitteesInd01
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IRS990/MissionDesc0THE MARFAN FOUNDATION CREATES A BRIGHTER FUTURE FOR EVERYONE AFFECTED BY MARFAN SYNDROME AND RELATED CONDITIONS. THE FOUNDATION WORKS TIRELESSLY TO ADVANCE RESEARCH, SERVE AS A RESOURCE FOR FAMILIES AND HEALTHCARE PROVIDERS, AND RAISE PUBLIC AWARENESS.
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IRS990/PoliticalCampaignActyInd00

Document Assets

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Filings

Displayed year

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

Open filing
Assets
$12,637,785
Liabilities
$420,079
Net assets
$12,217,706
Revenue
$4,353,700
Expenses
$5,374,588
Net income
-$1,020,888
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Facts available. Structured filing facts are available, but richer extracted sections are limited.$19.5$2.67$16.9$7.78$7.57$0.21
2024Detailed filing. Detailed filing data is available for this year.$18.1$1.86$16.3$5.49$6.65$1.16
2023Detailed filing. Detailed filing data is available for this year.$18.6$1.72$16.8$8.20$6.76$1.44
2022Detailed filing. Detailed filing data is available for this year.$16.6$1.51$15.1$9.81$4.71$5.11
2021Detailed filing. Detailed filing data is available for this year.$12.5$1.68$10.8$4.90$4.89$0.01
2020Detailed filing. Detailed filing data is available for this year.$11.1$2.06$9.09$3.89$6.17$2.28
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$12.1$0.48$11.6$4.70$5.47$0.76
2018Detailed filing. Detailed filing data is available for this year.$12.6$0.42$12.2$4.35$5.37$1.02
2017Detailed filing. Detailed filing data is available for this year.$13.5$0.42$13.1$8.32$4.47$3.86
2016Detailed filing. Detailed filing data is available for this year.$9.31$0.31$9.00$3.52$4.64$1.12
2015Detailed filing. Detailed filing data is available for this year.$10.6$0.49$10.1$3.55$4.44$0.89
2014Detailed filing. Detailed filing data is available for this year.$11.5$0.53$11.0$3.05$4.04$0.99
2013Summary only. Only limited summary data is available for this year.$12.5$0.56$11.9$2.85$3.84$0.99
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$13.4$0.42$13.0$4.00
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$9.86$0.45$9.40$3.59