Civic Intelligence

National Foundation for Ectodermal

EIN 37-1112496 • 501(c)3 • Fairview Heights, IL

Profile

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

6 Executive Drive Suite 2Fairview Heights, IL 62208

www.nfed.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

38th percentile

0.02x

Higher debt load relative to assets than 38% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

51st percentile

0.08x

Higher debt load relative to revenue than 51% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

45th percentile

2.1%

Higher net margin than 45% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

77th percentile

$128,350

Higher top officer pay than 77% of similar nonprofits.

Top officer pay equals 10.4% of source-year revenue.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Asset Growth

56th percentile

5.8%

Faster asset growth than 56% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

48th percentile

5.9%

Faster revenue growth than 48% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets38th percentile

Assets

Up

$4,790,999

Up $261,676 (+5.8%) from 2023

Liabilities

Down

$98,322

Down $58,087 (-37%) from 2023

Net Assets

Up

$4,692,677

Up $319,763 (+7.3%) from 2023

Operations
Liabilities / Revenue51st percentileNet Margin45th percentile

Revenue

Up

$1,229,652

Up $68,247 (+5.9%) from 2023

Expenses

Up

$1,203,383

Up $123,598 (+11%) from 2023

Net Income

Down

$26,269

Down $55,351 (-68%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth56th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$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

2024

Assets$4,790,999
Liabilities$98,322
Net Assets$4,692,677
Open 2024 Filing

Operations Trend

Revenue Growth48th percentile

Revenue, expenses, and net income by year, with the latest 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

2024

Revenue$1,229,652
Expenses$1,203,383
Net Income$26,269
Open 2024 Filing

Filings

Most recent year

2024 • Form 990XML pending. An XML filing is linked for this year, but detailed extraction is still pending.

Open filing
Assets
$4,790,999
Liabilities
$98,322
Net assets
$4,692,677
Revenue
$1,229,652
Expenses
$1,203,383
Net income
$26,269
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
Latest Detailed Filing

The latest 2024 filing currently has linked XML that has not been fully parsed yet. Showing the latest detailed filing from 2021 below.

Jump To
Filing Snapshot
Filing Period
Jan 1, 2021 to Dec 31, 2021
Signed
Apr 20, 2022
Return Version
2021v4.2
Gross Receipts
$2,927,735
Mission and Program Overview

Mission

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

Empower and connect people touched by ectodermal dysplasias via education, support, & research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$2,390,866$3,525,150▲ $1,134,284
Cash and Non-Interest-Bearing Accounts$437,472$609,178▲ $171,706
Savings and Temporary Cash Investments$304,967$125,505▼ $179,462
Accounts Receivable-$45,724-
Pledges and Grants Receivable$30,351$25,963▼ $4,388
Prepaid Expenses and Deferred Charges$10,986$8,123▼ $2,863
Land, Buildings, and Equipment, Net$0$0→ $0
Total Assets$3,174,642$4,339,643▲ $1,165,001
Liabilities
Accounts Payable and Accrued Expenses$31,888$49,589▲ $17,701
Grants Payable$14,200$9,177▼ $5,023
Total Liabilities$46,088$58,766▲ $12,678
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$3,048,264$4,223,557▲ $1,175,293
Net Assets With Donor Restrictions$80,290$57,320▼ $22,970
Total Net Assets Fund Balance$3,128,554$4,280,877▲ $1,152,323
Total Liabilities and Net Assets / Fund Balance$3,174,642$4,339,643▲ $1,165,001

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$0$41,323$41,323
Compensation and Service Providers
Top Officer Pay77th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Timothy MickelsonDirector of DevelopmentFT$100,271$100,271

Board Members and Trustees

NameTitle
Karl NelsenPresident
Anil VoraDirector
J Timothy Wright Dds MsDirector
Krista BasileDirector
Marianne VermeerDirector
Richard StratzDirector
Roy MoffittDirector
Ruth GeismarDirector
Keith ThromSecretary
George BarbarTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,500,948
Program Service Revenue
$4,580
Investment Income
$429,476
Other Revenue
$33,538
All Other Contributions
$1,060,454
Change in Net Assets
$1,083,188

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
No
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded5$443,565Stock Market Value
Total Noncash Contributions5$443,565-

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,968,542
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$78,665
Total Revenue per Audited Statements
$2,047,207
Total Revenue per Form 990
$1,968,542
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$532,591
Other Expenses$338,445
Total Fundraising Expense$153,293
Grants and Similar Amounts Paid$14,318
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$382,132$5,846$94,978$482,956
Fees for Services Accounting$31,905$389$6,616$38,910
Fees for Services Other$30,869$376$6,401$37,646
Payroll Taxes$29,146$446$7,244$36,836
Occupancy$28,170$340$5,548$34,058
Advertising$26,538$624$4,059$31,221
All Other Expenses$26,889$211$3,576$30,676
Office Expenses$17,606$215$3,650$21,471
Grants to Domestic Individuals$14,318--$14,318
Other Expenses$11,385$294$1,503$13,182
Pension Plan Contributions$9,242$141$2,297$11,680
Insurance$6,547$80$1,357$7,984
Fees for Services Legal$1,045$13$217$1,275
Other Employee Benefits$885$14$220$1,119
Total Functional Expenses$719,947$12,114$153,293$885,354

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$894,884
Expenses per Audited Statements$885,354
Total Expenses per Form 990$885,354
Expenses Not Reported on Form 990$9,530
Expenses Not Reported on Financial Statements$0
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$42,265
Fundraising Direct Expenses$9,530
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Halloween Bash$101,065$23,870$7,595$16,275
Total Events$299,486$42,265$9,530$32,735
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 35% controlled entity
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
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“The organization provides a copy of form 990 to every board member prior to filing. It is reviewed in detail by the organization's executive director and board.”

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.”

Form 990, Part VI, Page 6, Question 20 - Books in Care of

“The organization externally contracts for bookkeeping services.”

Filing and Contact Details

Filer

Filer Name
National Foundation for Ectodermal
EIN
37-1112496
Phone
6185662020
Address
6 EXECUTIVE DRIVE SUITE 2, FAIRVIEW HEIGHTS, IL 62208

Signing Officer

Name
George Barbar
Title
Treasurer
Phone
6185662020
Signed
2022-04-20
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Karl Nelsen
Formed
1981
Legal Domicile
Il
Voting Board Members
10
Independent Board Members
10
Employees
8
Volunteers
350

Preparer

Firm
Cliftonlarsonallen Llp
Address
475 REGENCY PARK SUITE 175, OFALLON, IL 62269
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.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Special event expense netted with revenue on 990 9,530.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Special event expense netted with revenue on form 990 9,530.”

Raw XML AppendixShowing 400 of 538 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.

Path#Value
IRS990/AccountantCompileOrReviewInd00
IRS990/AccountsPayableAccrExpnssGrp/BOYAmt031888
IRS990/AccountsPayableAccrExpnssGrp/EOYAmt049589
IRS990/AccountsReceivableGrp/EOYAmt045724
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS VIA EDUCATION, SUPPORT, & RESEARCH.
IRS990/AdvertisingGrp/FundraisingAmt04059
IRS990/AdvertisingGrp/ManagementAndGeneralAmt0624
IRS990/AdvertisingGrp/ProgramServicesAmt026538
IRS990/AdvertisingGrp/TotalAmt031221
IRS990/AllOtherContributionsAmt01060454
IRS990/AllOtherExpensesGrp/FundraisingAmt03576
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt0211
IRS990/AllOtherExpensesGrp/ProgramServicesAmt026889
IRS990/AllOtherExpensesGrp/TotalAmt030676
IRS990/AnnualDisclosureCoveredPrsnInd01
IRS990/AuditCommitteeInd01
IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt0MARY FETE
IRS990/BooksInCareOfDetail/PhoneNum06185662020
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt06 EXECUTIVE DRIVE STE 2
IRS990/BooksInCareOfDetail/USAddress/CityNm0FAIRVIEW HEIGHTS
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0IL
IRS990/BooksInCareOfDetail/USAddress/ZIPCd062208
IRS990/BusinessRlnWith35CtrlEntInd00
IRS990/BusinessRlnWithFamMemInd00
IRS990/BusinessRlnWithOrgMemInd00
IRS990/CashNonInterestBearingGrp/BOYAmt0437472
IRS990/CashNonInterestBearingGrp/EOYAmt0609178
IRS990/ChangeToOrgDocumentsInd00
IRS990/CntrctRcvdGreaterThan100KCnt00
IRS990/CollectionsOfArtInd00
IRS990/CompensationFromOtherSrcsInd00
IRS990/CompensationProcessCEOInd01
IRS990/CompensationProcessOtherInd01
IRS990/ConflictOfInterestPolicyInd01
IRS990/ConservationEasementsInd00
IRS990/ConsolidatedAuditFinclStmtInd00
IRS990/ContriRptFundraisingEventAmt0257221
IRS990/CreditCounselingInd00
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt01500948
IRS990/CYGrantsAndSimilarPaidAmt014318
IRS990/CYInvestmentIncomeAmt0429476
IRS990/CYOtherExpensesAmt0338445
IRS990/CYOtherRevenueAmt033538
IRS990/CYProgramServiceRevenueAmt04580
IRS990/CYRevenuesLessExpensesAmt01083188
IRS990/CYSalariesCompEmpBnftPaidAmt0532591
IRS990/CYTotalExpensesAmt0885354
IRS990/CYTotalFundraisingExpenseAmt0153293
IRS990/CYTotalProfFndrsngExpnsAmt00
IRS990/CYTotalRevenueAmt01968542
IRS990/DecisionsSubjectToApprovaInd00
IRS990/DeductibleArtContributionInd00
IRS990/DeductibleNonCashContriInd01
IRS990/DelegationOfMgmtDutiesInd00
IRS990/Desc0SUPPORT - THE FAMILY SUPPORT TEAMS, COMPRISED OF FAMILY MEMBERS AND AFFECTED INDIVIDUALS, OVERSEES NFED'S SUPPORT PROGRAMS THAT SEEK TO EMPOWER AND CONNECT INDIVIDUALS AFFECTED BY ECTODERMAL DYSPLASIAS AND THEIR FAMILIES. NFED PUBLISHES HIGH QUALITY INFORMATION TO PROVIDE FAMILIES WITH KNOWLEDGE THAT WILL INCREASE THEIR QUALITY OF LIFE. INFORMATION IS SHARED THROUGH THE FIRST CONNECT PROGRAM, A WEB SITE, MEDICAL/DENTAL GUIDE SERIES, AND CONFERENCES. THE NATIONAL FAMILY CONFERENCE IS NFED'S HALLMARK PROGRAM BRINGING ENTIRE FAMILIES TOGETHER TO LEARN, SHARE AND NETWORK WITH ONE ANOTHER AND WITH EXPERT CARE PROVIDERS. AFFECTED CHILDREN AND THEIR SIBLINGS ATTEND KIDS CAMP AT THE CONFERENCES WHERE THEY PARTICIPATE IN EDUCATIONAL AND SOCIAL ACTIVITIES WITH OTHER CHILDREN LIKE THEM TO DEVELOP SELF ESTEEM. NFED PROVIDES FINANCIAL ASSISTANCE TO INDIVIDUALS TO ATTEND THE FAMILY CONFERENCE. NFED'S FAMILY TO FAMILY NETWORK CONNECTS FAMILIES WITH A CARING LIAISON IN THEIR REGION WHO CAN PROVIDE MORAL SUPPORT, INFORMATION AND PRACTICAL ADVICE, GUIDANCE AND RESOURCES.
IRS990/DescribedInSection501c3Ind01
IRS990/DisregardedEntityInd00
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IRS990/DonorRstrOrQuasiEndowmentsInd00
IRS990/ElectionOfBoardMembersInd00
IRS990/EmployeeCnt08
IRS990/EmploymentTaxReturnsFiledInd01
IRS990/EngagedInExcessBenefitTransInd00
IRS990/ExpenseAmt0307321
IRS990/FamilyOrBusinessRlnInd00
IRS990/FederalGrantAuditRequiredInd00
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IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt0389
IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt031905
IRS990/FeesForServicesAccountingGrp/TotalAmt038910
IRS990/FeesForServicesLegalGrp/FundraisingAmt0217
IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt013
IRS990/FeesForServicesLegalGrp/ProgramServicesAmt01045
IRS990/FeesForServicesLegalGrp/TotalAmt01275
IRS990/FeesForServicesOtherGrp/FundraisingAmt06401
IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt0376
IRS990/FeesForServicesOtherGrp/ProgramServicesAmt030869
IRS990/FeesForServicesOtherGrp/TotalAmt037646
IRS990/ForeignActivitiesInd00
IRS990/ForeignFinancialAccountInd00
IRS990/ForeignOfficeInd00
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IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt1040.00
IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd0X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd0X
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IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd2X
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IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd4X
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IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd6X
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IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
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IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt90
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt100
IRS990/Form990PartVIISectionAGrp/PersonNm0KARL NELSEN
IRS990/Form990PartVIISectionAGrp/PersonNm1GEORGE BARBAR
IRS990/Form990PartVIISectionAGrp/PersonNm2KEITH THROM
IRS990/Form990PartVIISectionAGrp/PersonNm3RICHARD STRATZ
IRS990/Form990PartVIISectionAGrp/PersonNm4KRISTA BASILE
IRS990/Form990PartVIISectionAGrp/PersonNm5ROY MOFFITT
IRS990/Form990PartVIISectionAGrp/PersonNm6MARIANNE VERMEER
IRS990/Form990PartVIISectionAGrp/PersonNm7J TIMOTHY WRIGHT DDS MS
IRS990/Form990PartVIISectionAGrp/PersonNm8ANIL VORA
IRS990/Form990PartVIISectionAGrp/PersonNm9RUTH GEISMAR
IRS990/Form990PartVIISectionAGrp/PersonNm10TIMOTHY MICKELSON
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IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt80
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IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt80
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt100
IRS990/Form990PartVIISectionAGrp/TitleTxt0PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt1TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt2SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt3DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt4DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt5DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt6DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt7DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt8DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt9DIRECTOR
IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR OF DEVELOPMENT
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/FormationYr01981
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd01
IRS990/FundraisingAmt0257221
IRS990/FundraisingDirectExpensesAmt09530
IRS990/FundraisingGrossIncomeAmt042265
IRS990/GainOrLossGrp/SecuritiesAmt0403696
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt010
IRS990/GovernmentGrantsAmt0183273
IRS990/GrantAmt00
IRS990/GrantsPayableGrp/BOYAmt014200
IRS990/GrantsPayableGrp/EOYAmt09177
IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt014318
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt014318
IRS990/GrantsToIndividualsInd01
IRS990/GrantsToOrganizationsInd00
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt01353359
IRS990/GrossReceiptsAmt02927735
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd01
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt010
IRS990/IndivRcvdGreaterThan100KCnt01
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartIIIInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InfoInScheduleOPartXIIInd0X
IRS990/InsuranceGrp/FundraisingAmt01357
IRS990/InsuranceGrp/ManagementAndGeneralAmt080
IRS990/InsuranceGrp/ProgramServicesAmt06547
IRS990/InsuranceGrp/TotalAmt07984
IRS990/InvestmentIncomeGrp/ExclusionAmt025780
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt025780
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt02390866
IRS990/InvestmentsPubTradedSecGrp/EOYAmt03525150
IRS990/IRPDocumentCnt02
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt041323
IRS990/LandBldgEquipBasisNetGrp/BOYAmt00
IRS990/LandBldgEquipBasisNetGrp/EOYAmt00
IRS990/LandBldgEquipCostOrOtherBssAmt041323
IRS990/LegalDomicileStateCd0IL
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0949663
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd00
IRS990/NetAssetsOrFundBalancesBOYAmt03128554
IRS990/NetAssetsOrFundBalancesEOYAmt04280877
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt0403696
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0403696
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt032735
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt032735
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt056683
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt03048264
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt04223557
IRS990/NoListedPersonsCompensatedInd0X
IRS990/NoncashContributionsAmt0443565
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt05548
IRS990/OccupancyGrp/ManagementAndGeneralAmt0340
IRS990/OccupancyGrp/ProgramServicesAmt028170
IRS990/OccupancyGrp/TotalAmt034058
IRS990/OfficeExpensesGrp/FundraisingAmt03650
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt0215
IRS990/OfficeExpensesGrp/ProgramServicesAmt017606
IRS990/OfficeExpensesGrp/TotalAmt021471
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt0220
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt014
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt0885
IRS990/OtherEmployeeBenefitsGrp/TotalAmt01119
IRS990/OtherExpensesGrp/Desc0RESEARCH FUNDING
IRS990/OtherExpensesGrp/Desc1DEVELOPMENT
IRS990/OtherExpensesGrp/Desc2ADVOCACY
IRS990/OtherExpensesGrp/Desc3FAMILY SUPPORT NETWORK
IRS990/OtherExpensesGrp/FundraisingAmt015627
IRS990/OtherExpensesGrp/FundraisingAmt11503
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt03125
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt1294
IRS990/OtherExpensesGrp/ProgramServicesAmt076156
IRS990/OtherExpensesGrp/ProgramServicesAmt112500
IRS990/OtherExpensesGrp/ProgramServicesAmt214614
IRS990/OtherExpensesGrp/ProgramServicesAmt311385
IRS990/OtherExpensesGrp/TotalAmt076156
IRS990/OtherExpensesGrp/TotalAmt131252
IRS990/OtherExpensesGrp/TotalAmt214614
IRS990/OtherExpensesGrp/TotalAmt313182
IRS990/OtherRevenueMiscGrp/BusinessCd0624100
IRS990/OtherRevenueMiscGrp/Desc0PROMOTIONAL ITEMS
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt0803
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0803
IRS990/OtherRevenueTotalAmt0803
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt094978
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt05846
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0382132
IRS990/OtherSalariesAndWagesGrp/TotalAmt0482956
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt07244
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt0446
IRS990/PayrollTaxesGrp/ProgramServicesAmt029146
IRS990/PayrollTaxesGrp/TotalAmt036836
IRS990/PensionPlanContributionsGrp/FundraisingAmt02297
IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt0141
IRS990/PensionPlanContributionsGrp/ProgramServicesAmt09242
IRS990/PensionPlanContributionsGrp/TotalAmt011680
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt030351
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt025963
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt010986
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt08123
IRS990/PrincipalOfficerNm0KARL NELSEN
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0624100
IRS990/ProgramServiceRevenueGrp/Desc0NATIONAL FAMILY CONFERENCE
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt04580
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt04580
IRS990/ProgSrvcAccomActy2Grp/Desc0TREATMENT - THE PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. NFED TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. NFED ADVOCATES FOR IMPROVING ACCESS TO CARE WITH SPONSORING LEGISLATION TO COVER CONGENITAL ANOMALIES, AND COLLABORATING WITH UNIVERSITIES, GOVERNMENT, PATIENT HEALTH ORGANIZATIONS. AFFECTED INDIVIDUALS CAN RECEIVE MORE AFFORDABLE CARE FROM EXPERIENCED TEAMS OF DENTISTS IN TREATMENT OF ECTODERMAL DYSPLASIAS AT NFED DENTAL TREATMENT CENTERS IN THE U.S. NFED ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0197333
IRS990/ProgSrvcAccomActy2Grp/GrantAmt014318
IRS990/ProgSrvcAccomActy2Grp/RevenueAmt00
IRS990/ProgSrvcAccomActy3Grp/Desc0RESEARCH - THE SCIENTIFIC ADVISORY COUNCIL OVERSEES NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. NFED ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTES OF HEALTH. NFED PROVIDES SEED FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS, AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. THE 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. NFED ALSO SPONSORS RESEARCH CONFERENCES.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt0215293
IRS990/ProgSrvcAccomActy3Grp/GrantAmt00
IRS990/ProgSrvcAccomActy3Grp/RevenueAmt00
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0793549
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt04758
IRS990/PYInvestmentIncomeAmt099225
IRS990/PYOtherExpensesAmt0229953
IRS990/PYOtherRevenueAmt0102844
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0263846
IRS990/PYSalariesCompEmpBnftPaidAmt0497061
IRS990/PYTotalExpensesAmt0731772
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0995618
IRS990/QuidProQuoContributionsInd00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt01083188
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/RevenueAmt05383
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0304967
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0125505
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0MISCELLANEOUS - 2017 AMOUNT: $ 2,902. 2018 AMOUNT: $ 783. 2019 AMOUNT: $ 3,652. 2020 AMOUNT: $ 207. 2021 AMOUNT: $ 803.
IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc0SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME:
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt01500948
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0793549
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0823099
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0685752
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0622643
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt04425991
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt025780
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt024326
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt026429
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt026206
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt022082
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt0124823
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt0266777
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt0803
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt0207
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus2YearsAmt03652
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt0783
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt02902
IRS990ScheduleA/OtherIncome170Grp/TotalAmt08347
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.93670
IRS990ScheduleA/PublicSupportPY170Pct00.89170
IRS990ScheduleA/PublicSupportTotal170Amt04270709
IRS990ScheduleA/SubstantialContributorsTotAmt0155282
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt01500948
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0793549
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0823099
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0685752
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0622643
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt04425991
IRS990ScheduleA/TotalSupportAmt04559161
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd01
IRS990ScheduleD/DonatedServicesAndUseFcltsAmt012452
IRS990ScheduleD/EquipmentGrp/BookValueAmt00
IRS990ScheduleD/EquipmentGrp/DepreciationAmt041323
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt041323
IRS990ScheduleD/ExpensesNotReportedAmt09530
IRS990ScheduleD/ExpensesNotRptFinclStmtAmt00
IRS990ScheduleD/ExpensesSubtotalAmt0885354
IRS990ScheduleD/FootnoteTextInd0X
IRS990ScheduleD/NetUnrealizedGainsInvstAmt056683
IRS990ScheduleD/OtherExpensesIncludedAmt09530
IRS990ScheduleD/OtherRevenueAmt09530
IRS990ScheduleD/RevenueNotReportedAmt078665
IRS990ScheduleD/RevenueNotReportedFinclStmtAmt00
IRS990ScheduleD/RevenueSubtotalAmt01968542
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0PER 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.
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt1SPECIAL EVENT EXPENSE NETTED WITH REVENUE ON 990 9,530.

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