Civic Intelligence

Tarlov Cyst Disease Foundation

990EZ • Fiscal year 2016 • EIN 20-5724680

Jan 01, 2016 to Dec 31, 2016 • Filed on Nov 06, 2017

Organization Profilewww.tarlovcystfoundation.org
326 Norton RdKnoxville, TN 37920

(865) 577-4945

Siviq Scores

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

Liabilities / Assets

Score unavailable

No value available

Liabilities-to-assets requires both liabilities and assets on this filing.

Source year 2016

Liabilities / Revenue

Score unavailable

No value available

Liabilities-to-revenue requires both liabilities and revenue on this filing.

Source year 2016

Net Margin

93rd percentile

53%

Higher net margin than 93% of similar nonprofits.

2016 filings • 501(c)3 • <$500k nonprofits • Source year 2016

Top Officer Pay

84th percentile

$24,000

Higher top officer pay than 84% of similar nonprofits.

Top officer pay equals 44.5% of source-year revenue.

2016 filings • 501(c)3 • <$500k nonprofits • Source year 2016

Asset Growth

72nd percentile

20%

Faster asset growth than 72% of similar nonprofits.

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

Revenue Growth

79th percentile

30%

Faster revenue growth than 79% of similar nonprofits.

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

Balance Sheet
Liabilities / AssetsScore unavailable

Assets

Up

$174,004

Up $28,676 (+20%) from 2015

Net Assets

Up

$174,004

Up $28,676 (+20%) from 2015

Liabilities

-

No earlier filing loaded for comparison.

Revenue And Expenses
Liabilities / RevenueScore unavailableNet Margin93rd percentile

Revenue

Up

$53,898

Up $12,460 (+30%) from 2015

Expenses

Down

$25,222

Down $2,670 (-9.6%) from 2015

Net Income

Up

$28,676

Up $15,130 (+112%) from 2015

Historical Trend

Balance Sheet Trend

Asset Growth72nd percentile

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

$3.0M$2.0M$1.0M$0Assets 2010: $97,052Net Assets 2010: $97,0522010Assets 2011: $49,773Net Assets 2011: $49,7732011Assets 2012: $67,251Net Assets 2012: $67,2512012Assets 2013: $103,201Net Assets 2013: $103,2012013Assets 2014: $131,782Net Assets 2014: $131,7822014Assets 2015: $145,328Net Assets 2015: $145,3282015Assets 2016: $174,004Net Assets 2016: $174,0042016Assets 2017: $169,269Net Assets 2017: $169,2692017Assets 2018: $174,904Net Assets 2018: $174,9042018Assets 2019: $185,563Net Assets 2019: $185,5632019Assets 2020: $188,534Net Assets 2020: $188,5342020Assets 2021: $172,554Net Assets 2021: $172,5542021Assets 2022: $156,541Net Assets 2022: $156,5412022Assets 2023: $140,459Net Assets 2023: $140,4592023Assets 2024: $2,916,528Liabilities 2024: $50Net Assets 2024: $2,916,4782024

Highlighted filing

2016

Assets$174,004
Liabilities-
Net Assets$174,004
Open 2016 Filing

Operations Trend

Revenue Growth79th percentile

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

$200K$100K$0-$100KRevenue 2010: $49,594Expenses 2010: $2,385Net Income 2010: $47,2092010Revenue 2011: $29,236Expenses 2011: $76,515Net Income 2011: -$47,2792011Revenue 2012: $18,415Expenses 2012: $937Net Income 2012: $17,4782012Revenue 2013: $46,628Expenses 2013: $10,678Net Income 2013: $35,9502013Revenue 2014: $49,777Expenses 2014: $21,196Net Income 2014: $28,5812014Revenue 2015: $41,438Expenses 2015: $27,892Net Income 2015: $13,5462015Revenue 2016: $53,898Expenses 2016: $25,222Net Income 2016: $28,6762016Revenue 2017: $26,455Expenses 2017: $31,190Net Income 2017: -$4,7352017Revenue 2018: $34,181Expenses 2018: $28,546Net Income 2018: $5,6352018Revenue 2019: $42,534Expenses 2019: $31,875Net Income 2019: $10,6592019Revenue 2020: $36,859Expenses 2020: $33,888Net Income 2020: $2,9712020Revenue 2021: $20,560Expenses 2021: $36,540Net Income 2021: -$15,9802021Revenue 2022: $23,747Expenses 2022: $39,760Net Income 2022: -$16,0132022Revenue 2023: $21,139Expenses 2023: $37,221Net Income 2023: -$16,0822023Revenue 2024: $48,219Expenses 2024: $147,123Net Income 2024: -$98,9042024

Highlighted filing

2016

Revenue$53,898
Expenses$25,222
Net Income$28,676
Open 2016 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2016 to Dec 31, 2016
Signed
Nov 6, 2017
Return Version
2016v3.0
Gross Receipts
$53,898
Mission and Program Overview

Mission

The Tarlov Cyst Disease Foundation is a volunteer-based, 501(c)(3) non-profit foundation dedicated to the research, improved diagnosis and development of successful treatments and outcomes for symptomatic Tarlov cysts. The Foundation is incorporated exclusively for scientific, educational, and charitable purposes that will seek to improve the level of understanding, diagnosis and treatment of Tarlov cysts.

Program Services

DescriptionGrantsExpenses
Tarlov Cyst Disease Foundation 2016 Accomplishments-HighlightsThe Board of Directors of the Tarlov Cyst Disease Foundation had five Board Meetings in 2016 in the months of January, March, June, October and November. Additional written Update Reports were provided from the Executive Director in August and December 2016, in addition to frequent emails exchanged throughout the year.Kieran Murphy M.D. Interventional Neuroradiologist from Toronto Canada spoke at the University of TN Medical Center on January 19th to the Radiology Dept., Graduate School of Medicine, Residents, Fellows and staff of the Radiology Dept. and included in his presentation the importance for radiologist to report the Tarlov/perineural cysts when imaged and not to ignore this pathology; he further explained the pathophysiology and symptomatology of this diagnosis.The Tarlov Cyst Disease Initiative Update at Johns Hopkins: Phase 1 of research began with 7 families with two or more biologic members who have been diagnosed with symptomatic Tarlov/perineural cysts; the total of the combined familial cases in Phase 1 is 22. All individuals were contacted by the Foundation Exec. Dir. to share the opportunity to be participants in the research, to provide research information via Q&A and Fact Sheet Documents, and Johns Hopkins Genetics Research Team information. The process of the Genetics research teams plan, under the direction of the Director of the Smilow Genetics Center, Dr. Hal Dietz, M.D.PhD was explained. The funding for this research was provided in 2015 by private funding and matched funding from the State of MD. A release of patient information from the participants was provided to the Hopkins Genetics Counselor and phone appointments were established for interviews with the potential research participants, prior to signing a consent form for participation in the research. Acquisition of samples for testing were acquired throughout the year and genome sequencing was in process by all participants by August 2016. Numerous meetings were planned with the research team and the Foundations Exec. Dir. during the year with updates provided. In June, the Foundation Executive Director traveled to Johns Hopkins and met with the research team and other physicians throughout Johns Hopkins Hospital. The Tarlov Cyst Disease Professorship will be awarded in Sept. 2017.In May 2016, Rare Disease Report provided an Advocacy Spotlight on the Tarlov Cyst Disease Foundation, written by Ruth J. Hickman, M.D.In June 2016, the Board of Directors developed a job description for a part time administrative assistant position and discussed potential hourly salary to be included in the 2017 budget. The Exec. Dir. will conduct interviews in the future with potential applicants.Organizational plans began with the Board of Directors for updating the Foundations website and potential transition to a new webhost in the future. An added feature to the website was discussed to provide translations for multiple languages on the site, since the Foundation is contacted by patients from around the world.In late August 2016, the Tarlov Cyst Disease Foundation was selected for the 2016 Best of Knoxville Award in the Research Category by the Knoxville Award Program.Plans began for the Foundations Tarlov Cyst Disease Information exhibits at selected medical conferences possibly in late 2017 & definitely in 2018. The targeted clinical conferences are: Family Practice, Neurology, Radiology, Neurosurgery, Urology, Gynecology, Gastroenterology, and Pain Management. These medical practices are most frequently seeing patients with symptoms of Tarlov/perineural cysts; however they are often not recognizing the multi-systems symptoms as relevant to . Printed brochures of a Physicians Guide to Tarlov Cyst Disease and a PowerPoint slide presentation were planned.A new Treasurer was nominated and unanimously elected by the Board of Directors in October 2016. Tammy Zinser-Minochas orientation began immediately and she served faithfully throughout the busy last quarter of the year.In November teleconference meetings were attended by the Executive Dir. with representatives of the Academy of Radiology Research, CDC and the CEO of Worldwide Syringomyelia & Chiari Foundation to discuss issues with failure to report findings on imaging studies of Tarlov/perineural cysts, syringomyelia and Chiari Malformation and to increase understanding of this causing delay in diagnosis of these spine pathologies.In November a Tarlov/perineural cyst epidemiology manuscript was submitted to the American Journal of Neuroradiology by co-authors Anne Louise Oaklander, M.D. PhD , Professor at Harvard Medical School and Neurologist at Mass. General, Diane Finkelstein, PhD Bio-statistician, Harvard and Mass. General, and Reta H. Hiers, RNC, TCDF Exec. DirectorIn December a comprehensive Newsletter was sent to the Foundations Members and Donors, Tarlov Cyst Researchers, and the Medical/Scientific Advisory Board recapping the years highlights and the Foundations commitment to continuing our efforts in patient advocacy, research, and education about the life altering diagnosis of Tarlov /perineural cysts. It was a very busy year!A few statistics/data regarding foundation contacts throughout the year: More than 800 Contact us Submissions were sent to the Foundation from patients and physicians throughout the world, 454 patient surveys were completed, 58 new members and donors, and too numerous to count emails and phone calls were received; numerous advocacy efforts were requested, on behalf of patients with their insurance co., national healthcare systems, physicians, SSA, Workers Comp. etc. and were promptly responded to throughout the year.$24,092-
Compensation and Service Providers
Top Officer Pay84th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Reta Honey Hiers RNCPresidentFT$24,000-$24,000
Dona DutcherVice PresidentPT$0--
Sandy A RoofSecretaryPT$0--
DEL DUTCHERDirectorPT$0--
Cathy Gray CarlomagnoDirectorPT$0--
Tammy Zinser-MinochaTreasurerPT$0--
Filing and Contact Details

Filer

Filer Name
Tarlov Cyst Disease Foundation
EIN
20-5724680
Phone
8655774945
Address
326 NORTON RD, KNOXVILLE, TN 37920

Signing Officer

Name
Reta Honey Hiers RNC
Title
President
Signed
2017-11-06
Discuss with paid preparer
Yes

Preparer

Firm
Blad & Associates Pc
Address
1832 Independence Square Ste A, Dunwoody, GA 30338
Preparer
Robert S Blad CPA
Phone
7705127600
Supplemental Narrative

Additional Explanations

Other Expenses.1002

“Office Expenses $67”

Other Expenses.1003

“Information Technology $88”

Other Expenses.1005

“Travel $4”

Other Expenses.1

“WEBSITE $479”

Other Expenses.2

“misc $125”

Other Expenses.3

“DOMAIN NAME RENEWAL $60”

Other Expenses.4

“MEMBERSHIP DUES $50”

Other Expenses.5

“BANK FEES $30”

Raw XML Appendix183 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt0Tarlov Cyst Disease Foundation 2016 Accomplishments-HighlightsThe Board of Directors of the Tarlov Cyst Disease Foundation had five Board Meetings in 2016 in the months of January, March, June, October and November. Additional written Update Reports were provided from the Executive Director in August and December 2016, in addition to frequent emails exchanged throughout the year.Kieran Murphy M.D. Interventional Neuroradiologist from Toronto Canada spoke at the University of TN Medical Center on January 19th to the Radiology Dept., Graduate School of Medicine, Residents, Fellows and staff of the Radiology Dept. and included in his presentation the importance for radiologist to report the Tarlov/perineural cysts when imaged and not to ignore this pathology; he further explained the pathophysiology and symptomatology of this diagnosis.The Tarlov Cyst Disease Initiative Update at Johns Hopkins: Phase 1 of research began with 7 families with two or more biologic members who have been diagnosed with symptomatic Tarlov/perineural cysts; the total of the combined familial cases in Phase 1 is 22. All individuals were contacted by the Foundation Exec. Dir. to share the opportunity to be participants in the research, to provide research information via Q&A and Fact Sheet Documents, and Johns Hopkins Genetics Research Team information. The process of the Genetics research teams plan, under the direction of the Director of the Smilow Genetics Center, Dr. Hal Dietz, M.D.PhD was explained. The funding for this research was provided in 2015 by private funding and matched funding from the State of MD. A release of patient information from the participants was provided to the Hopkins Genetics Counselor and phone appointments were established for interviews with the potential research participants, prior to signing a consent form for participation in the research. Acquisition of samples for testing were acquired throughout the year and genome sequencing was in process by all participants by August 2016. Numerous meetings were planned with the research team and the Foundations Exec. Dir. during the year with updates provided. In June, the Foundation Executive Director traveled to Johns Hopkins and met with the research team and other physicians throughout Johns Hopkins Hospital. The Tarlov Cyst Disease Professorship will be awarded in Sept. 2017.In May 2016, Rare Disease Report provided an Advocacy Spotlight on the Tarlov Cyst Disease Foundation, written by Ruth J. Hickman, M.D.In June 2016, the Board of Directors developed a job description for a part time administrative assistant position and discussed potential hourly salary to be included in the 2017 budget. The Exec. Dir. will conduct interviews in the future with potential applicants.Organizational plans began with the Board of Directors for updating the Foundations website and potential transition to a new webhost in the future. An added feature to the website was discussed to provide translations for multiple languages on the site, since the Foundation is contacted by patients from around the world.In late August 2016, the Tarlov Cyst Disease Foundation was selected for the 2016 Best of Knoxville Award in the Research Category by the Knoxville Award Program.Plans began for the Foundations Tarlov Cyst Disease Information exhibits at selected medical conferences possibly in late 2017 & definitely in 2018. The targeted clinical conferences are: Family Practice, Neurology, Radiology, Neurosurgery, Urology, Gynecology, Gastroenterology, and Pain Management. These medical practices are most frequently seeing patients with symptoms of Tarlov/perineural cysts; however they are often not recognizing the multi-systems symptoms as relevant to . Printed brochures of a Physicians Guide to Tarlov Cyst Disease and a PowerPoint slide presentation were planned.A new Treasurer was nominated and unanimously elected by the Board of Directors in October 2016. Tammy Zinser-Minochas orientation began immediate
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ReturnHeader/TaxYr02016

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2016 • Form 990EZDetailed filing. Detailed filing data is available for this year.

Open filing
Assets
$174,004
Liabilities
-
Net assets
$174,004
Revenue
$53,898
Expenses
$25,222
Net income
$28,676
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.92$0.00$2.92$0.05$0.15$0.10
2023Detailed filing. Detailed filing data is available for this year.$0.14$0.14$0.02$0.04$0.02
2022Detailed filing. Detailed filing data is available for this year.$0.16$0.16$0.02$0.04$0.02
2021Detailed filing. Detailed filing data is available for this year.$0.17$0.17$0.02$0.04$0.02
2020Detailed filing. Detailed filing data is available for this year.$0.19$0.19$0.04$0.03$0.00
2019Detailed filing. Detailed filing data is available for this year.$0.19$0.19$0.04$0.03$0.01
2018Detailed filing. Detailed filing data is available for this year.$0.17$0.17$0.03$0.03$0.01
2017Detailed filing. Detailed filing data is available for this year.$0.17$0.17$0.03$0.03$0.00
2016Detailed filing. Detailed filing data is available for this year.$0.17$0.17$0.05$0.03$0.03
2015Detailed filing. Detailed filing data is available for this year.$0.15$0.15$0.04$0.03$0.01
2014Detailed filing. Detailed filing data is available for this year.$0.13$0.13$0.05$0.02$0.03
2013Detailed filing. Detailed filing data is available for this year.$0.10$0.10$0.05$0.01$0.04
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.07$0.07$0.02$0.00$0.02
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.05$0.05$0.03$0.08$0.05
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.10$0.10$0.05$0.00$0.05