Civic Intelligence

The Ftd Disorders Registry LLC

990 • Fiscal year 2016 • EIN 47-3601782

Jan 01, 2016 to Dec 31, 2016 • Filed on May 30, 2017

637 Carolina StreetSan Francisco, CA 94107

(415) 626-1501

Siviq Scores

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

Liabilities / Assets

47th percentile

0.03x

Higher debt load relative to assets than 47% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Liabilities / Revenue

58th percentile

0.06x

Higher debt load relative to revenue than 58% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Net Margin

19th percentile

-13%

Higher net margin than 19% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Top Officer Pay

49th percentile

$0

Higher top officer pay than 49% of similar nonprofits.

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

2016 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2016

Asset Growth

68th percentile

9.3%

Faster asset growth than 68% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2015 to 2016

Revenue Growth

10th percentile

-35%

Faster revenue growth than 10% of similar nonprofits.

2016 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2015 to 2016

Assets

Up

$515,815

Up $43,753 (+9.3%) from 2015

Net Assets

Up

$500,822

Up $44,706 (+9.8%) from 2015

Liabilities

Down

$14,993

Down $953 (-6.0%) from 2015

Revenue

Down

$234,540

Down $123,785 (-35%) from 2015

Expenses

Up

$264,834

Up $187,625 (+243%) from 2015

Net Income

Down

-$30,294

Down $311,410 (-111%) from 2015

Historical Trend

Balance Sheet Trend

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

$3.0M$2.0M$1.0M$0Assets 2015: $472,062Liabilities 2015: $15,946Net Assets 2015: $456,1162015Assets 2016: $515,815Liabilities 2016: $14,993Net Assets 2016: $500,8222016Assets 2017: $875,990Liabilities 2017: $17,912Net Assets 2017: $858,0782017Assets 2018: $1,008,189Liabilities 2018: $30,337Net Assets 2018: $977,8522018Assets 2019: $1,250,745Liabilities 2019: $48,724Net Assets 2019: $1,202,0212019Assets 2020: $1,086,052Liabilities 2020: $88,399Net Assets 2020: $997,6532020Assets 2021: $1,129,264Liabilities 2021: $37,058Net Assets 2021: $1,092,2062021Assets 2022: $1,122,791Liabilities 2022: $37,184Net Assets 2022: $1,085,6072022Assets 2023: $2,043,499Liabilities 2023: $116,119Net Assets 2023: $1,927,3802023Assets 2024: $2,410,986Liabilities 2024: $407,302Net Assets 2024: $2,003,6842024Assets 2025: $2,218,789Liabilities 2025: $236,444Net Assets 2025: $1,982,3452025

Highlighted filing

2016

Assets$515,815
Liabilities$14,993
Net Assets$500,822

Operations Trend

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

$2.0M$1.5M$1.0M$500K$0-$500KRevenue 2015: $358,325Expenses 2015: $77,209Net Income 2015: $281,1162015Revenue 2016: $234,540Expenses 2016: $264,834Net Income 2016: -$30,2942016Revenue 2017: $611,229Expenses 2017: $303,973Net Income 2017: $307,2562017Revenue 2018: $489,156Expenses 2018: $369,382Net Income 2018: $119,7742018Revenue 2019: $762,008Expenses 2019: $537,839Net Income 2019: $224,1692019Revenue 2020: $543,584Expenses 2020: $747,952Net Income 2020: -$204,3682020Revenue 2021: $439,215Expenses 2021: $344,662Net Income 2021: $94,5532021Revenue 2022: $727,717Expenses 2022: $734,316Net Income 2022: -$6,5992022Revenue 2023: $1,600,782Expenses 2023: $759,009Net Income 2023: $841,7732023Revenue 2024: $1,031,597Expenses 2024: $955,293Net Income 2024: $76,3042024Revenue 2025: $871,164Expenses 2025: $892,503Net Income 2025: -$21,3392025

Highlighted filing

2016

Revenue$234,540
Expenses$264,834
Net Income-$30,294
Jump To
Filing Snapshot
Filing Period
Jan 1, 2016 to Dec 31, 2016
Signed
May 30, 2017
Return Version
2016v3.0
Gross Receipts
$234,540
Mission and Program Overview

Mission

The registry's mission is to facilitate research and advance research to accelerate treatment development for all types of ftd, a devastating neurodegenerative disease that strikes people in the prime of life and for which, currently, there is no cure.

The FTD Disorders Registry LLC pro- vides a patient registry for those afflicted with the devastating neurodegener- ative disease of Frontotemporal degeneration, for which currently, there is no cure. The Registry serves patients and advocacy groups seeking help & information.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$471,604$329,637▼ $141,967
Land, Buildings, and Equipment, Net-$150,000-
Prepaid Expenses and Deferred Charges$458$36,178▲ $35,720
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-
Total Assets$472,062$515,815▲ $43,753
Other Assets Total-$0-
Liabilities
Accounts Payable and Accrued Expenses$15,946$14,993▼ $953
Total Liabilities$15,946$14,993▼ $953
Net Assets / Fund Balance
Unrestricted Net Assets$456,116$500,822▲ $44,706
Total Net Assets Fund Balance$456,116$500,822▲ $44,706
Total Liabilities and Net Assets / Fund Balance$472,062$515,815▲ $43,753

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$150,000-$150,000
Compensation and Service Providers

Board Members and Trustees

NameTitle
Emily LevyPresident
Patrick BrannellyDirector
Suzanne Markel-FoxDirector
Rodney PearlmanTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Association for Frontotemporal DegenerationConsulting290 King of Prussia Road, Radnor, PA 19087$139,844
Revenue and Support

Revenue Composition

Contributions and Grants
$234,421
Program Service Revenue
$0
Investment Income
$119
Other Revenue
$0
All Other Contributions
$234,421
Change in Net Assets
$-30,294

Audited Revenue Reconciliation

Revenue per Audited Statements
$234,540
Total Revenue per Audited Statements
$234,540
Total Revenue per Form 990
$234,540
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$264,834
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0
Total Fundraising Expense$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Advertising$66,025--$66,025
Fees for Services Accounting-$24,131-$24,131
Fees for Services Other$10,366--$10,366
Office Expenses$5,735$3,980-$9,715
Travel$6,110--$6,110
Insurance-$3,069-$3,069
Other Expenses$23$262-$285
Total Functional Expenses$223,312$41,522$0$264,834

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$264,834
Total Expenses per Audited Statements$264,834
Total Expenses per Form 990$264,834
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Interested-Person Transactions

Interested PartyRelationshipDescriptionShared RevenueAmount
-ContractConsultingNo$139,844

Loans and Receivables

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

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
Yes
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et

Three of the directors have a family relationship.

Form 990, Part VI, Line 6: Explanation of Classes of Members or Shareholder

The FTD Disorders Registry LLC (the Registry) was formed as a Delaware Limited Liability Company in 2015 by two founding members: (1) the Association for Frontotemporal Degeneration and (2) The Bluefield Project To Cure Frontotemporal Dementia, both of which are 501(c)(3) nonprofit exempt organizations.

Form 990, Part VI, Line 7A: How Members or Shareholders Elect Governing Body

Members control appointment of respective Management Committee and Board members.

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

Form 990 is prepared by an outside tax professional. The form is then reviewed byat least one of the organization's the board members. After a full review, the final version of the tax return is provided to all members of the organization's voting body. A representative of management authorizes the final form 990 which is then e-filed with the internal revenue service.

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

Members of the board of directors review all potential conflicts of interest at least annually. All board members are required to disclose potential conflicts and any related party affiliations. Loans between the organization and members of management and the board are strictly prohibited. The organization seeks full transparency on all relationships. Any potential conflicts (in fact or appearance) are discussed openly and resolved in accordance with the organization's policies and procedures.

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

The organization does not have any employees.

Form 990, Part VI, Line 15B: Compensation Review and Approval Process for Officers and Key Employees

The organization does not have any employees.

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

All of the organization's governing documents, financial statements and other legalfilings are maintained in a secure environment and held available for inspection bytax authorities and the general public. Tax returns are posted annually towww.guidestar.org (where they are available for viewing as electronic copies) and are also available for a physical inspection at the organization's office in san francisco, california.

Filing and Contact Details

Filer

Filer Name
The FTD Disorders Registry LLC
EIN
47-3601782
Phone
4156261501
Address
637 Carolina Street, San Francisco, CA 94107

Signing Officer

Name
Rodney Pearlman
Title
Treasurer
Signed
2017-05-30
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Rodney Pearlman
Formed
2015
Legal Domicile
De
Voting Board Members
8
Independent Board Members
6
Employees
0

Preparer

Firm
Regalia & Associates CPAs
Address
103 Town Country Dr Ste K, Danville, CA 94526
Preparer
Douglas W Regalia
Phone
9253140390
Supplemental Narrative

Additional Explanations

Other Changes In Net Assets Or Fund Balances - Other Increases

Investment from Members = $75000

Financial Statement Notes

Part X : FIN48 Footnote

Income TaxesFinancial statement presentation follows the recommendations of ASC 740, Income Taxes. Under ASC 740, the Registry is required to report information regarding its exposure to various tax positions taken by the organization and requires a two-step process that separates recognition from measurement. The first step is determining whether a tax position has met the recognition threshold; the second step is measuring a tax position that meets the recognition threshold. Management believes that the Registry has adequately evaluated its current tax positions and has concluded that as of December 31, 2016, the Registry does not have any uncertain tax positions for which a reserve or an accrual for a tax liability would be necessary.The Registry has received notification from the Internal Revenue Service and the State of California that it qualifies for tax-exempt status under Section 501(c)(3) of the Internal Revenue Code and Section 23701d of the California Revenue and Taxation Code. This exemption is subject to periodic review by the federal and state taxing authorities and management is confident that the organization continues to satisfy all federal and state statutes in order to qualify for continued tax exemption status. The Registry may periodically receive unrelated business income requiring the organization to file separate tax returns under federal and state statutes. Under such conditions, the Registry calculates and accrues the applicable taxes payable.

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IRS990/ProgSrvcAccomActy2Grp/Desc0Provide a mechanism for coordinating and querying registrant volunteers to inform on more patient-friendly clinical trial design and potentially regulatory and policy groups in aid of patient-focused drug development.Thrive as a dynamic resource that can adapt to the FTD (and related disorders) research landscape and needs of the lay community.
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IRS990ScheduleA/OtherIncome170Grp/TotalAmt00
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IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0350000
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt0574341
IRS990ScheduleA/TotalSupportAmt0574505
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IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0Income TaxesFinancial statement presentation follows the recommendations of ASC 740, Income Taxes. Under ASC 740, the Registry is required to report information regarding its exposure to various tax positions taken by the organization and requires a two-step process that separates recognition from measurement. The first step is determining whether a tax position has met the recognition threshold; the second step is measuring a tax position that meets the recognition threshold. Management believes that the Registry has adequately evaluated its current tax positions and has concluded that as of December 31, 2016, the Registry does not have any uncertain tax positions for which a reserve or an accrual for a tax liability would be necessary.The Registry has received notification from the Internal Revenue Service and the State of California that it qualifies for tax-exempt status under Section 501(c)(3) of the Internal Revenue Code and Section 23701d of the California Revenue and Taxation Code. This exemption is subject to periodic review by the federal and state taxing authorities and management is confident that the organization continues to satisfy all federal and state statutes in order to qualify for continued tax exemption status. The Registry may periodically receive unrelated business income requiring the organization to file separate tax returns under federal and state statutes. Under such conditions, the Registry calculates and accrues the applicable taxes payable.
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0Part X : FIN48 Footnote
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IRS990ScheduleD/TotalExpensesPerForm990Amt0264834
IRS990ScheduleD/TotalRevenuePerForm990Amt0234540
IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt0234540
IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt0264834
IRS990/ScheduleJRequiredInd0false
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/NameOfInterested/BusinessName/BusinessNameLine1Txt0Assn Frontotemporal Degen
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/RelationshipDescriptionTxt0Contract
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IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionAmt0139844
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionDesc0Consulting
IRS990ScheduleL/SupplementalInformationDetail/ExplanationTxt0The FTD Disorders Registry LLC ("FTD") utilizes services provided by Association for Frontotemporal Degeneration ("AFD" - a 501.C.3 exempt organization). A Board member of FTB is also a Director on the Board of AFD. During the year ended December 31, 2015, FTB remitted payments totaling $31,657 to AFD.
IRS990ScheduleL/SupplementalInformationDetail/FormAndLineReferenceDesc0Schedule L, Part V Supplemental Information
IRS990/ScheduleORequiredInd0true
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0Three of the directors have a family relationship.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1The FTD Disorders Registry LLC (the Registry) was formed as a Delaware Limited Liability Company in 2015 by two founding members: (1) the Association for Frontotemporal Degeneration and (2) The Bluefield Project To Cure Frontotemporal Dementia, both of which are 501(c)(3) nonprofit exempt organizations.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2Members control appointment of respective Management Committee and Board members.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BYAT LEAST ONE OF THE ORGANIZATION'S THE BOARD MEMBERS. AFTER A FULL REVIEW, THE FINAL VERSION OF THE TAX RETURN IS PROVIDED TO ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. A REPRESENTATIVE OF MANAGEMENT AUTHORIZES THE FINAL FORM 990 WHICH IS THEN E-FILED WITH THE INTERNAL REVENUE SERVICE.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST AT LEAST ANNUALLY. ALL BOARD MEMBERS ARE REQUIRED TO DISCLOSE POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THE ORGANIZATION AND MEMBERS OF MANAGEMENT AND THE BOARD ARE STRICTLY PROHIBITED. THE ORGANIZATION SEEKS FULL TRANSPARENCY ON ALL RELATIONSHIPS. ANY POTENTIAL CONFLICTS (IN FACT OR APPEARANCE) ARE DISCUSSED OPENLY AND RESOLVED IN ACCORDANCE WITH THE ORGANIZATION'S POLICIES AND PROCEDURES.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5The organization does not have any employees.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt6The organization does not have any employees.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt7ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGALFILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BYTAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TOWWW.GUIDESTAR.ORG (WHERE THEY ARE AVAILABLE FOR VIEWING AS ELECTRONIC COPIES) AND ARE ALSO AVAILABLE FOR A PHYSICAL INSPECTION AT THE ORGANIZATION'S OFFICE IN SAN FRANCISCO, CALIFORNIA.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt8Investment from Members = $75000
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Line 6: Explanation of Classes of Members or Shareholder
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990, Part VI, Line 7a: How Members or Shareholders Elect Governing Body
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3Form 990, Part VI, Line 11b: Form 990 Review Process
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc5Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc6Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc7Form 990, Part VI, Line 19: Other Organization Documents Publicly Available
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc8Other Changes In Net Assets Or Fund Balances - Other Increases
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IRS990/TaxablePartyNotificationInd0false
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IRS990/TerminateOperationsInd0false
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IRS990/TravelGrp/ProgramServicesAmt06110
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IRS990/TrnsfrExmptNonChrtblRltdOrgInd0false
IRS990/TypeOfOrganizationOtherInd0X
IRS990/UnrelatedBusIncmOverLimitInd0false
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IRS990/UponRequestInd0X
IRS990/USAddress/AddressLine1Txt0637 Carolina Street
IRS990/USAddress/CityNm0San Francisco
IRS990/USAddress/StateAbbreviationCd0CA
IRS990/USAddress/ZIPCd0941072725
IRS990/VotingMembersGoverningBodyCnt08
IRS990/VotingMembersIndependentCnt06
IRS990/WebsiteAddressTxt0www.bluefieldproject.org
IRS990/WhistleblowerPolicyInd0true
ReturnHeader/BuildTS02017-02-10 21:41:12Z
ReturnHeader/BusinessOfficerGrp/DiscussWithPaidPreparerInd0true
ReturnHeader/BusinessOfficerGrp/PersonNm0Rodney Pearlman
ReturnHeader/BusinessOfficerGrp/PersonTitleTxt0Treasurer
ReturnHeader/BusinessOfficerGrp/SignatureDt02017-05-30
ReturnHeader/Filer/BusinessName/BusinessNameLine1Txt0The FTD Disorders Registry LLC
ReturnHeader/Filer/BusinessNameControlTxt0FTDD
ReturnHeader/Filer/EIN0473601782
ReturnHeader/Filer/PhoneNum04156261501
ReturnHeader/Filer/USAddress/AddressLine1Txt0637 Carolina Street
ReturnHeader/Filer/USAddress/CityNm0San Francisco
ReturnHeader/Filer/USAddress/StateAbbreviationCd0CA
ReturnHeader/Filer/USAddress/ZIPCd094107
ReturnHeader/PreparerFirmGrp/PreparerFirmName/BusinessNameLine1Txt0Regalia & Associates CPAs
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/AddressLine1Txt0103 Town Country Dr Ste K
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/CityNm0Danville
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/StateAbbreviationCd0CA
ReturnHeader/PreparerFirmGrp/PreparerUSAddress/ZIPCd094526
ReturnHeader/PreparerPersonGrp/PhoneNum09253140390
ReturnHeader/PreparerPersonGrp/PreparerPersonNm0Douglas W Regalia
ReturnHeader/ReturnTs02017-05-30T09:41:12-07:00
ReturnHeader/ReturnTypeCd0990
ReturnHeader/TaxPeriodBeginDt02016-01-01

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