Civic Intelligence

National Foundation for Ectodermal Dysplasias

990 • Fiscal year 2013 • EIN 37-1112496

Jan 01, 2013 to Dec 31, 2013 • Filed on Mar 24, 2014

Organization ProfileWWW.NFED.ORG
6 Executive Drive Suite 262208

(618) 566-2020

Siviq Scores

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

Liabilities / Assets

47th percentile

0.09x

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

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Liabilities / Revenue

62nd percentile

0.21x

Higher debt load relative to revenue than 62% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Net Margin

19th percentile

-12%

Higher net margin than 19% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Top Officer Pay

38th percentile

$0

Higher top officer pay than 38% of similar nonprofits.

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

2013 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2013

Asset Growth

46th percentile

0.9%

Faster asset growth than 46% of similar nonprofits.

2013 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2012 to 2013

Revenue Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2013

Balance Sheet
Liabilities / Assets47th percentile

Assets

Up

$1,519,010

Up $13,915 (+0.9%) from 2012

Net Assets

Up

$1,374,958

Up $85,526 (+6.6%) from 2012

Liabilities

Down

$144,052

Down $71,611 (-33%) from 2012

Revenue And Expenses
Liabilities / Revenue62nd percentileNet Margin19th percentile

Revenue

$678,375

No earlier filing loaded for comparison.

Expenses

Down

$760,390

Down $289,015 (-28%) from 2012

Net Income

-$82,015

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset Growth46th percentile

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

$6.0M$4.0M$2.0M$0Assets 2011: $1,324,991Liabilities 2011: $307,598Net Assets 2011: $1,017,3932011Assets 2012: $1,505,095Liabilities 2012: $215,663Net Assets 2012: $1,289,4322012Assets 2013: $1,519,010Liabilities 2013: $144,052Net Assets 2013: $1,374,9582013Assets 2014: $1,897,730Liabilities 2014: $130,150Net Assets 2014: $1,767,5802014Assets 2015: $1,919,131Liabilities 2015: $48,937Net Assets 2015: $1,870,1942015Assets 2016: $2,090,160Liabilities 2016: $68,312Net Assets 2016: $2,021,8482016Assets 2017: $2,330,765Liabilities 2017: $112,571Net Assets 2017: $2,218,1942017Assets 2018: $2,216,012Liabilities 2018: $33,538Net Assets 2018: $2,182,4742018Assets 2019: $2,717,658Liabilities 2019: $52,356Net Assets 2019: $2,665,3022019Assets 2020: $3,174,642Liabilities 2020: $46,088Net Assets 2020: $3,128,5542020Assets 2021: $4,339,643Liabilities 2021: $58,766Net Assets 2021: $4,280,8772021Assets 2022: $3,999,579Liabilities 2022: $190,948Net Assets 2022: $3,808,6312022Assets 2023: $4,529,323Liabilities 2023: $156,409Net Assets 2023: $4,372,9142023Assets 2024: $4,790,999Liabilities 2024: $98,322Net Assets 2024: $4,692,6772024

Highlighted filing

2013

Assets$1,519,010
Liabilities$144,052
Net Assets$1,374,958
Open 2013 Filing

Operations Trend

Revenue GrowthScore unavailable

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

$2.0M$1.0M$0-$1.0MExpenses 2011: $950,8072011Expenses 2012: $1,049,4052012Revenue 2013: $678,375Expenses 2013: $760,390Net Income 2013: -$82,0152013Revenue 2014: $1,082,451Expenses 2014: $688,706Net Income 2014: $393,7452014Revenue 2015: $996,187Expenses 2015: $805,005Net Income 2015: $191,1822015Revenue 2016: $835,098Expenses 2016: $734,715Net Income 2016: $100,3832016Revenue 2017: $871,710Expenses 2017: $855,693Net Income 2017: $16,0172017Revenue 2018: $909,237Expenses 2018: $650,400Net Income 2018: $258,8372018Revenue 2019: $1,078,711Expenses 2019: $849,033Net Income 2019: $229,6782019Revenue 2020: $995,618Expenses 2020: $731,772Net Income 2020: $263,8462020Revenue 2021: $1,968,542Expenses 2021: $885,354Net Income 2021: $1,083,1882021Revenue 2022: $1,493,211Expenses 2022: $1,083,870Net Income 2022: $409,3412022Revenue 2023: $1,161,405Expenses 2023: $1,079,785Net Income 2023: $81,6202023Revenue 2024: $1,229,652Expenses 2024: $1,203,383Net Income 2024: $26,2692024

Highlighted filing

2013

Revenue$678,375
Expenses$760,390
Net Income-$82,015
Open 2013 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2013 to Dec 31, 2013
Signed
Mar 24, 2014
Return Version
2013v3.0
Gross Receipts
$700,216
Mission and Program Overview

Mission

To empower and connect people touched by ectodermal dysplasias through education, support, and research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$900,457$1,159,676▲ $259,219
Cash and Non-Interest-Bearing Accounts$217,023$200,404▼ $16,619
Savings and Temporary Cash Investments$273,100$118,813▼ $154,287
Pledges and Grants Receivable$74,075--
Accounts Receivable$18,829$21,472▲ $2,643
Prepaid Expenses and Deferred Charges$13,269$15,713▲ $2,444
Land, Buildings, and Equipment, Net$8,342$2,932▼ $5,410
Total Assets$1,505,095$1,519,010▲ $13,915
Liabilities
Grants Payable$172,522$125,678▼ $46,844
Accounts Payable and Accrued Expenses$43,141$18,374▼ $24,767
Total Liabilities$215,663$144,052▼ $71,611
Net Assets / Fund Balance
Unrestricted Net Assets$1,144,740$1,304,532▲ $159,792
Temporarily Rstr Net Assets$144,692$70,426▼ $74,266
Total Net Assets Fund Balance$1,289,432$1,374,958▲ $85,526
Total Liabilities and Net Assets / Fund Balance$1,505,095$1,519,010▲ $13,915

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$2,932$38,391$41,323
Compensation and Service Providers
Top Officer Pay38th percentile

Board Members and Trustees

NameTitle
Anil VoraPresident
George BarbarVice President
Brett SchottDirector
David Freestone MdDirector
Frank Farrington Dds MsDirector
John Andrew Stith MdDirector
Liz ArroDirector
Paul HammDirector
Rick Emery CtfaDirector
Ruth G GeismarDirector
Sarah Tevis Poteet DdsDirector
Jack KrizOffice Liaison
Garrett C ReuterPast Treasurer
Pamela KennedySecretary
Brian F RandallTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$543,826
Program Service Revenue
$31,315
Investment Income
$44,121
Other Revenue
$59,113
All Other Contributions
$312,820
Change in Net Assets
$-82,015

Audited Revenue Reconciliation

Revenue per Audited Statements
$673,241
Revenue Not Reported on Financial Statements
$5,134
Revenue Not Reported on Form 990
$175,984
Other Revenue Adjustments
$5,134
Total Revenue per Audited Statements
$849,225
Total Revenue per Form 990
$678,375
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$416,965
Other Expenses$306,685
Total Fundraising Expense$102,372
Grants and Similar Amounts Paid$36,740
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$290,325$13,519$62,582$366,426
All Other Expenses$32,634$3,670$4,866$41,170
Grants to Domestic Individuals$36,740--$36,740
Fees for Services Other$21,991$1,620$4,347$27,958
Payroll Taxes$21,951$1,021$4,731$27,703
Occupancy$19,146$1,287$3,701$24,134
Other Expenses$8,380$3,257$11,632$23,269
Office Expenses$13,004$2,843$2,446$18,293
Other Employee Benefits$11,744$547$2,531$14,822
Fees for Services Accounting$10,445$769$2,065$13,279
Pension Plan Contributions$6,349$296$1,369$8,014
Depreciation Depletion$3,949$379$1,082$5,410
Insurance$3,741$284$744$4,769
Fees for Services Legal$1,395$103$276$1,774
Total Functional Expenses$628,423$29,595$102,372$760,390

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$763,699
Total Expenses per Form 990$760,390
Expenses per Audited Statements$755,256
Expenses Not Reported on Form 990$8,443
Expenses Not Reported on Financial Statements$5,134
Other Expense Adjustments$5,134
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$64,824
Fundraising Direct Expenses$16,803
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Event 1$150,316$30,035$8,446$21,589
Event 2$18,992$3,602$5,762$-2,160
Total Events$295,830$64,824$16,803$48,021
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
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
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 11

“The organization provides a copy of form 990 to every board member. It is discussed, reviewed and approved prior to filing.”

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

“The audit, budget and finance committee annually reviews the disclosure process and reports to the board of directors on the submission of all required disclosure statements.”

Form 990, Part VI, Section B, Line 15

“The board of directors regularly assesses the performance and effectiveness of the executive director and determines future actions to include amount of compensation based on that assessment. The board of directors provide guidance to the executive director in determining the compensation of the organization's staff. The members of the board of directors are not compensated.”

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. The financial statements and form 990 are posted on the organization's website and copies of other governing documents such as form 1023 and conflict of interest policy are available upon written request.”

Filing and Contact Details

Filer

EIN
37-1112496
Phone
6185662020

Signing Officer

Name
Anil Vora
Title
President
Phone
6185662020
Signed
2014-03-24
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Anil Vora
Formed
1981
Legal Domicile
Il
Voting Board Members
14
Independent Board Members
14
Employees
10
Volunteers
260

Preparer

Preparer
Jeff Parker
Phone
6182331200
Supplemental Narrative

Additional Explanations

FORM 990, PART XII, LINE 2C: AUDIT PROCESS -

“There were no changes in the oversight process or selection process during the year.”

Financial Statement Notes

PART X, LINE 2:

“Per note 1 of the audited financial statements: tax status - the foundation is tax-exempt under section 501(c)(3) of the internal revenue code and, therefore, is exempt from both federal and state income taxes. Accordingly, no provision has been made for income taxes in the accompanying financial statements. The foundation's 2010 through 2013 tax years are open for examination by federal and state taxing authorities.”

PART XI, LINE 4B - OTHER ADJUSTMENTS:

“TREATMENT FUNDING 5,134.”

PART XII, LINE 4B - OTHER ADJUSTMENTS:

“TREATMENT FUNDING 5,134.”

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IRS990/Form990PartVIISectionAGrp/TitleTxt0DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt1VICE PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt2DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt3DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt4DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt5DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt6DIRECTOR
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IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt11DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt12DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt13PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt14PAST TREASURER
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01981
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0231006
IRS990/FundraisingDirectExpensesAmt016803
IRS990/FundraisingGrossIncomeAmt064824
IRS990/GainOrLossGrp/SecuritiesAmt026664
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt014
IRS990/GrantAmt013490
IRS990/GrantsPayableGrp/BOYAmt0172522
IRS990/GrantsPayableGrp/EOYAmt0125678
IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt036740
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt036740
IRS990/GrantsToIndividualsInd01
IRS990/GrantsToOrganizationsInd00
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt031702
IRS990/GrossReceiptsAmt0700216
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd01
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt014
IRS990/IndivRcvdGreaterThan100KCnt00
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartIIIInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIIInd0X
IRS990/InsuranceGrp/FundraisingAmt0744
IRS990/InsuranceGrp/ManagementAndGeneralAmt0284
IRS990/InsuranceGrp/ProgramServicesAmt03741
IRS990/InsuranceGrp/TotalAmt04769
IRS990/InvestmentIncomeGrp/ExclusionAmt017457
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt017457
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt0900457
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01159676
IRS990/IRPDocumentCnt00
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt038391
IRS990/LandBldgEquipBasisNetGrp/BOYAmt08342
IRS990/LandBldgEquipBasisNetGrp/EOYAmt02932
IRS990/LandBldgEquipCostOrOtherBssAmt041323
IRS990/LegalDomicileStateCd0IL
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt05038
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MiscellaneousRevenueGrp/RelatedOrExemptFuncIncomeAmt0747
IRS990/MiscellaneousRevenueGrp/TotalRevenueColumnAmt0747
IRS990/MissionDesc0TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd00
IRS990/NetAssetsOrFundBalancesBOYAmt01289432
IRS990/NetAssetsOrFundBalancesEOYAmt01374958
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt026664
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt026664
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt048021
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt048021
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0172143
IRS990/NoListedPersonsCompensatedInd0X
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt03701
IRS990/OccupancyGrp/ManagementAndGeneralAmt01287
IRS990/OccupancyGrp/ProgramServicesAmt019146
IRS990/OccupancyGrp/TotalAmt024134
IRS990/OfficeExpensesGrp/FundraisingAmt02446
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt02843
IRS990/OfficeExpensesGrp/ProgramServicesAmt013004
IRS990/OfficeExpensesGrp/TotalAmt018293
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt02531
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt0547
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt011744
IRS990/OtherEmployeeBenefitsGrp/TotalAmt014822
IRS990/OtherExpensesGrp/Desc0FAMILY CONFERENCES
IRS990/OtherExpensesGrp/Desc1RESEARCH FUNDING
IRS990/OtherExpensesGrp/Desc2PUBLICATIONS
IRS990/OtherExpensesGrp/Desc3DEVELOPMENT
IRS990/OtherExpensesGrp/FundraisingAmt011632
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt03257
IRS990/OtherExpensesGrp/ProgramServicesAmt084963
IRS990/OtherExpensesGrp/ProgramServicesAmt137033
IRS990/OtherExpensesGrp/ProgramServicesAmt224633
IRS990/OtherExpensesGrp/ProgramServicesAmt38380
IRS990/OtherExpensesGrp/TotalAmt084963
IRS990/OtherExpensesGrp/TotalAmt137033
IRS990/OtherExpensesGrp/TotalAmt224633
IRS990/OtherExpensesGrp/TotalAmt323269
IRS990/OtherRevenueMiscGrp/BusinessCd0624100
IRS990/OtherRevenueMiscGrp/BusinessCd1624100
IRS990/OtherRevenueMiscGrp/BusinessCd2624100
IRS990/OtherRevenueMiscGrp/Desc0TREATMENT FUNDING
IRS990/OtherRevenueMiscGrp/Desc1PROMOTIONAL ITEMS
IRS990/OtherRevenueMiscGrp/Desc2MISCELLANEOUS
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt05134
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt14026
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt21185
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt05134
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt14026
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt21185
IRS990/OtherRevenueTotalAmt011092
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt062582
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt013519
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0290325
IRS990/OtherSalariesAndWagesGrp/TotalAmt0366426
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayrollTaxesGrp/FundraisingAmt04731
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt01021
IRS990/PayrollTaxesGrp/ProgramServicesAmt021951
IRS990/PayrollTaxesGrp/TotalAmt027703
IRS990/PensionPlanContributionsGrp/FundraisingAmt01369
IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt0296
IRS990/PensionPlanContributionsGrp/ProgramServicesAmt06349
IRS990/PensionPlanContributionsGrp/TotalAmt08014
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt074075
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt013269
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt015713
IRS990/PrincipalOfficerNm0ANIL VORA
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0624100
IRS990/ProgramServiceRevenueGrp/Desc0NATIONAL FAMILY CONFER
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt031315
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt031315
IRS990/ProgSrvcAccomActy2Grp/Desc0TREATMENT - MEDICAL AND DENTAL EXPERTS COMPRISE THE PATIENT CARE COUNCIL WHICH OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. THE FOUNDATION TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. THE NFED ADVOCATES FOR IMPROVING ACCESS TO CARE BY COLLABORATING WITH UNIVERSITIES, GOVERNMENT, PROFESSIONAL AND OTHER PATIENT-BASED HEALTH ORGANIZATIONS. AFFECTED INDIVIDUALS CAN RECEIVE MORE AFFORDABLE CARE FROM EXPERIENCED TEAMS OF DENTISTS AT ONE OF 16 NFED DENTAL TREATMENT CENTERS IN THE U.S. THE FOUNDATION ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0153008
IRS990/ProgSrvcAccomActy2Grp/GrantAmt023250
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt05134
IRS990/ProgSrvcAccomActy3Grp/Desc0RESEARCH - THE SCIENTIFIC ADVISORY COUNCIL OVERSEES THE NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING MANAGEMENT SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. THE FOUNDATION ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTES OF HEALTH. THE NFED PROVIDES SEED FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. THE WEB-BASED ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY SERVES AS A REPOSITORY OF CLINICAL INFORMATION AND FACILITATES COMMUNICATION AMONG AFFECTED INDIVIDUALS, CLINICIANS INVOLVED IN THEIR TREATMENT AND SCIENTISTS WHO STRIVE TO ADVANCE RESEARCH ON ECTODERMAL DYSPLASIAS. THE FOUNDATION ALSO SPONSORS SCIENTIFIC MEETINGS TO INCREASE UNDERSTANDING OF THE DISORDERS.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt0176565
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0932838
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0152483
IRS990/PYInvestmentIncomeAmt045122
IRS990/PYOtherExpensesAmt0397547
IRS990/PYOtherRevenueAmt0209958
IRS990/PYProgramServiceRevenueAmt027017
IRS990/PYRevenuesLessExpensesAmt0165530
IRS990/PYSalariesCompEmpBnftPaidAmt0499375
IRS990/PYTotalExpensesAmt01049405
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt01214935
IRS990/QuidProQuoContributionsInd00
IRS990/ReconcilationRevenueExpnssAmt0-82015
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/RevenueAmt037273
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0273100
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0118813
IRS990ScheduleA/Form990ScheduleAPartIVGrp/ExplanationTxt0MISCELLANEOUS - 2009 AMOUNT: $ 4,693. 2010 AMOUNT: $ 4,910. 2011 AMOUNT: $ 5,166. 2012 AMOUNT: $ 34,264. 2013 AMOUNT: $ 11,092.
IRS990ScheduleA/Form990ScheduleAPartIVGrp/FormAndLineReferenceDesc0SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME:
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0543826
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0932838
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0669277
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0895580
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0974412
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt04015933
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt017457
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt027703
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt030107
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt017478
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt014884
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt0107629
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt011092
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt034264
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus2YearsAmt05166
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt04910
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt04693
IRS990ScheduleA/OtherIncome170Grp/TotalAmt060125
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.74040
IRS990ScheduleA/PublicSupportPY170Pct00.77680
IRS990ScheduleA/PublicSupportTotal170Amt03097444
IRS990ScheduleA/SubstantialContributorsTotAmt0918489
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0543826
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0932838
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0669277
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0895580
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0974412

Document Assets

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Filings

Displayed year

2013 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,519,010
Liabilities
$144,052
Net assets
$1,374,958
Revenue
$678,375
Expenses
$760,390
Net income
-$82,015
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.79$0.10$4.69$1.23$1.20$0.03
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.53$0.16$4.37$1.16$1.08$0.08
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.00$0.19$3.81$1.49$1.08$0.41
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.34$0.06$4.28$1.97$0.89$1.08
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$3.17$0.05$3.13$1.00$0.73$0.26
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.72$0.05$2.67$1.08$0.85$0.23
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.22$0.03$2.18$0.91$0.65$0.26
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.33$0.11$2.22$0.87$0.86$0.02
2016XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.09$0.07$2.02$0.84$0.73$0.10
2015Detailed filing. Detailed filing data is available for this year.$1.92$0.05$1.87$1.00$0.81$0.19
2014Detailed filing. Detailed filing data is available for this year.$1.90$0.13$1.77$1.08$0.69$0.39
2013Detailed filing. Detailed filing data is available for this year.$1.52$0.14$1.37$0.68$0.76$0.08
2012XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.51$0.22$1.29$1.05
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.32$0.31$1.02$0.95
Peer Organizations

Similar nonprofits based on the same Siviq industry and scale cohort. 2013 filings • 501(c)3 • $1M-$5M nonprofits