Civic Intelligence

The Ftd Disorders Registry LLC

990 • Fiscal year 2017 • EIN 47-3601782

Jan 01, 2017 to Dec 31, 2017 • Filed on Jun 28, 2018

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

44th percentile

0.02x

Higher debt load relative to assets than 44% of similar nonprofits.

2017 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2017

Liabilities / Revenue

48th percentile

0.03x

Higher debt load relative to revenue than 48% of similar nonprofits.

2017 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2017

Net Margin

92nd percentile

50%

Higher net margin than 92% of similar nonprofits.

2017 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2017

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.

2017 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2017

Asset Growth

92nd percentile

70%

Faster asset growth than 92% of similar nonprofits.

2017 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2016 to 2017

Revenue Growth

95th percentile

161%

Faster revenue growth than 95% of similar nonprofits.

2017 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2016 to 2017

Assets

Up

$875,990

Up $360,175 (+70%) from 2016

Net Assets

Up

$858,078

Up $357,256 (+71%) from 2016

Liabilities

Up

$17,912

Up $2,919 (+19%) from 2016

Revenue

Up

$611,229

Up $376,689 (+161%) from 2016

Expenses

Up

$303,973

Up $39,139 (+15%) from 2016

Net Income

Up

$307,256

Up $337,550 (+1114%) from 2016

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

2017

Assets$875,990
Liabilities$17,912
Net Assets$858,078

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

2017

Revenue$611,229
Expenses$303,973
Net Income$307,256
Jump To
Filing Snapshot
Filing Period
Jan 1, 2017 to Dec 31, 2017
Signed
Jun 28, 2018
Return Version
2017v2.2
Gross Receipts
$611,229
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$329,637$691,154▲ $361,517
Land, Buildings, and Equipment, Net$150,000$175,420▲ $25,420
Prepaid Expenses and Deferred Charges$36,178$9,416▼ $26,762
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$515,815$875,990▲ $360,175
Other Assets Total-$0-
Liabilities
Accounts Payable and Accrued Expenses$14,993$17,912▲ $2,919
Total Liabilities$14,993$17,912▲ $2,919
Net Assets / Fund Balance
Unrestricted Net Assets$500,822$858,078▲ $357,256
Total Net Assets Fund Balance$500,822$858,078▲ $357,256
Total Liabilities and Net Assets / Fund Balance$515,815$875,990▲ $360,175

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$175,420$26,988$202,408
Compensation and Service Providers

Board Members and Trustees

NameTitle
Jary LarsenPresident
Laura MiticDirector
Patrick BrannellyDirector
Susan DickinsonDirector
Suzanne Markel-FoxSecretary
Rodney PearlmanTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Association for Frontotemporal DegenerationConsulting/HR Staff290 King of Prussia Road, Radnor, PA 19087$154,419
Revenue and Support

Revenue Composition

Contributions and Grants
$611,074
Program Service Revenue
$0
Investment Income
$155
Other Revenue
$0
All Other Contributions
$611,074
Change in Net Assets
$307,256

Audited Revenue Reconciliation

Revenue per Audited Statements
$611,229
Total Revenue per Audited Statements
$611,229
Total Revenue per Form 990
$611,229
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$303,973
Total Fundraising Expense$3,821
Grants and Similar Amounts Paid$0
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Other$34,040--$34,040
Advertising$29,795--$29,795
Depreciation Depletion$26,988--$26,988
Fees for Services Accounting-$13,439$1,067$14,506
Office Expenses$3,954$7,512$395$11,861
Travel-$8,458$2,149$10,607
Fees for Services Legal-$6,837-$6,837
Insurance-$3,985$210$4,195
Other Expenses$70$10,656-$70
Total Functional Expenses$233,823$66,329$3,821$303,973

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$303,973
Total Expenses per Audited Statements$303,973
Total Expenses per Form 990$303,973
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$154,418

Loans and Receivables

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

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with family members
No
Business relationship with organization members
Yes
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

The following members of the Board of Directors of The FTD Disorders Registry LLC have relationships with certain related parties: Rodney Pearlman is also President of The Bluefield Project to Cure FTD, A donor organization and co-founder of The FTD Disorders Registry LLC. Susan Dickinson is CEO of The Association for Frontotemporal Degeneration, A donor organization and co-founder of The FTD Disorders Registry LLC. Staff at The Association for Frontotemporal Degeneration perform sub-contract work for The FTD Disorders Registry LLC. Jary Larsen is a past Chair and former Board member of The Association for Frontotemporal Degeneration Board of Directors. Patrick Brannelly is Program Director of the Tau Consortium, of the Rainwater Charitable Trust, a donor organization to The Association for Frontotemporal Degeneration, which contributed $299,341 during the year ended December 31, 2017. Laura Mitic is a part-time employee of The Bluefield Project to Cure FTD.

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 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
Phone
4156261501
Signed
2018-06-28
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Rodney Pearlman
Formed
2015
Legal Domicile
De
Voting Board Members
6
Independent Board Members
1
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 = $50000

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, 2017, 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/Desc0Goals of the Registry are to:Provide a centralized registry effort across the frontotemporal disorders spectrum, making de-identified data available to a diversity of stakeholders to support health outcomes research and other studies of interest to patient advocacy groups, clinical and basic science researchers.Improve the understanding of disease genotype and phenotype; improve quality of care; and provide a better understanding of disease epidemiology.Provide a centralized resource that can facilitate clinical trial enrollment for FTD disorders and the utility of preventive strategies by providing high quality, aggregate data, and a means of alerting a base of volunteers to clinical trial and research study opportunities.
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IRS990/PrincipalOfficerNm0Rodney Pearlman
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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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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, 2017, 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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IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/NameOfInterested/BusinessName/BusinessNameLine1Txt0Assn Frontotemporal Degen
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/RelationshipDescriptionTxt0Contract
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IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionDesc0Consulting
IRS990ScheduleL/SupplementalInformationDetail/ExplanationTxt0The FTD Disorders Registry LLC ("FTDDR") utilizes services provided by Association for Frontotemporal Degeneration ("AFTD" - a 501.C.3 exempt organization). A Board member of AFTD is also a Director on the Board of FTDDR. During the year ended December 31, 2017, FTDDR remitted payments totaling $154,419 to AFTD.
IRS990ScheduleL/SupplementalInformationDetail/FormAndLineReferenceDesc0Schedule L, Part V Supplemental Information
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0The following members of the Board of Directors of The FTD Disorders Registry LLC have relationships with certain related parties: Rodney Pearlman is also President of The Bluefield Project to Cure FTD, A donor organization and co-founder of The FTD Disorders Registry LLC. Susan Dickinson is CEO of The Association for Frontotemporal Degeneration, A donor organization and co-founder of The FTD Disorders Registry LLC. Staff at The Association for Frontotemporal Degeneration perform sub-contract work for The FTD Disorders Registry LLC. Jary Larsen is a past Chair and former Board member of The Association for Frontotemporal Degeneration Board of Directors. Patrick Brannelly is Program Director of the Tau Consortium, of the Rainwater Charitable Trust, a donor organization to The Association for Frontotemporal Degeneration, which contributed $299,341 during the year ended December 31, 2017. Laura Mitic is a part-time employee of The Bluefield Project to Cure FTD.
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 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 = $50000
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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