Civic Intelligence

Foundation for Ichthyosis and Related Skin Types

990 • Fiscal year 2016 • EIN 94-2738019

Oct 01, 2015 to Sep 30, 2016 • Filed on Mar 10, 2017

Organization ProfileWWW.FIRSTSKINFOUNDATION.ORG

View Organization Page

2616 N Broad StColmar, PA 18915-9423

(215) 977-9400

Siviq Scores

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

Liabilities / Assets

46th percentile

0.08x

Higher debt load relative to assets than 46% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Liabilities / Revenue

63rd percentile

0.21x

Higher debt load relative to revenue than 63% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Net Margin

9th percentile

-39%

Higher net margin than 9% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Top Officer Pay

70th percentile

$103,382

Higher top officer pay than 70% of similar nonprofits.

Top officer pay equals 14.7% of source-year revenue.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2016

Asset Growth

28th percentile

-3.3%

Faster asset growth than 28% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2015 to 2016

Revenue Growth

24th percentile

-10%

Faster revenue growth than 24% of similar nonprofits.

2016 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2015 to 2016

Balance Sheet
Liabilities / Assets46th percentile

Assets

Down

$1,895,622

Down $64,177 (-3.3%) from 2015

Net Assets

Down

$1,750,717

Down $169,999 (-8.9%) from 2015

Liabilities

Up

$144,905

Up $105,822 (+271%) from 2015

Revenue And Expenses
Liabilities / Revenue63rd percentileNet Margin9th percentile

Revenue

Down

$702,017

Down $78,125 (-10%) from 2015

Expenses

Up

$976,664

Up $182,385 (+23%) from 2015

Net Income

Down

-$274,647

Down $260,510 (-1843%) from 2015

Historical Trend

Balance Sheet Trend

Asset Growth28th percentile

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

$4.0M$3.0M$2.0M$1.0M$0Assets 2011: $1,632,884Liabilities 2011: $4,787Net Assets 2011: $1,628,0972011Assets 2012: $1,667,626Liabilities 2012: $3,708Net Assets 2012: $1,663,9182012Assets 2013: $1,906,929Liabilities 2013: $21,216Net Assets 2013: $1,885,7132013Assets 2014: $2,089,093Liabilities 2014: $28,143Net Assets 2014: $2,060,9502014Assets 2015: $1,959,799Liabilities 2015: $39,083Net Assets 2015: $1,920,7162015Assets 2016: $1,895,622Liabilities 2016: $144,905Net Assets 2016: $1,750,7172016Assets 2017: $1,966,454Liabilities 2017: $40,676Net Assets 2017: $1,925,7782017Assets 2018: $2,122,220Liabilities 2018: $29,668Net Assets 2018: $2,092,5522018Assets 2019: $2,275,431Liabilities 2019: $95,705Net Assets 2019: $2,179,7262019Assets 2020: $2,302,341Liabilities 2020: $118,025Net Assets 2020: $2,184,3162020Assets 2021: $2,615,716Liabilities 2021: $30,057Net Assets 2021: $2,585,6592021Assets 2022: $1,958,602Liabilities 2022: $32,271Net Assets 2022: $1,926,3312022Assets 2023: $2,074,173Liabilities 2023: $19,514Net Assets 2023: $2,054,6592023Assets 2024: $3,282,013Liabilities 2024: $46,944Net Assets 2024: $3,235,0692024

Highlighted filing

2016

Assets$1,895,622
Liabilities$144,905
Net Assets$1,750,717
Open 2016 Filing

Operations Trend

Revenue Growth24th percentile

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

$2.0M$1.0M$0-$1.0MExpenses 2011: $511,7982011Expenses 2012: $707,9802012Expenses 2013: $587,7312013Revenue 2014: $956,965Expenses 2014: $821,624Net Income 2014: $135,3412014Revenue 2015: $780,142Expenses 2015: $794,279Net Income 2015: -$14,1372015Revenue 2016: $702,017Expenses 2016: $976,664Net Income 2016: -$274,6472016Revenue 2017: $683,721Expenses 2017: $630,215Net Income 2017: $53,5062017Revenue 2018: $833,887Expenses 2018: $663,808Net Income 2018: $170,0792018Revenue 2019: $598,014Expenses 2019: $523,059Net Income 2019: $74,9552019Revenue 2020: $591,429Expenses 2020: $653,951Net Income 2020: -$62,5222020Revenue 2021: $1,013,506Expenses 2021: $626,248Net Income 2021: $387,2582021Revenue 2022: $708,551Expenses 2022: $891,681Net Income 2022: -$183,1302022Revenue 2023: $734,946Expenses 2023: $756,091Net Income 2023: -$21,1452023Revenue 2024: $1,970,863Expenses 2024: $1,182,513Net Income 2024: $788,3502024

Highlighted filing

2016

Revenue$702,017
Expenses$976,664
Net Income-$274,647
Open 2016 Filing
Jump To
Filing Snapshot
Filing Period
Oct 1, 2015 to Sep 30, 2016
Signed
Mar 10, 2017
Return Version
2015v3.0
Gross Receipts
$1,851,882
Mission and Program Overview

Mission

To improve the lives and seek cures for those affected by ichthyosis and related skin types.

Improve lives and seek cures for those affected by ichthyosis and related skin types.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,707,943$1,701,715▼ $6,228
Savings and Temporary Cash Investments$175,637$130,134▼ $45,503
Land, Buildings, and Equipment, Net$6,332$32,658▲ $26,326
Accounts Receivable$28,772$0▼ $28,772
Pledges and Grants Receivable$25,000$25,000→ $0
Prepaid Expenses and Deferred Charges$13,115$3,115▼ $10,000
Total Assets$1,959,799$1,895,622▼ $64,177
Other Assets Total$3,000$3,000→ $0
Liabilities
Grants Payable-$100,000-
Accounts Payable and Accrued Expenses$39,083$44,905▲ $5,822
Total Liabilities$39,083$144,905▲ $105,822
Net Assets / Fund Balance
Unrestricted Net Assets$1,129,468$995,221▼ $134,247
Temporarily Rstr Net Assets$681,235$645,483▼ $35,752
Permanently Rstr Net Assets$110,013$110,013→ $0
Total Net Assets Fund Balance$1,920,716$1,750,717▼ $169,999
Total Liabilities and Net Assets / Fund Balance$1,959,799$1,895,622▼ $64,177

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$32,658$25,922$58,580

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2015$122,756$300-$2,200$120,856
2014$122,006$750--$122,756
2013$124,365$550▲ $491$3,400$122,006
2012$124,592$950▲ $1,623$2,800$124,365
2011$85,242$39,810▲ $1,040$1,500$124,592
Compensation and Service Providers
Top Officer Pay70th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Jean R PickfordCEOFT$103,382$103,382

Board Members and Trustees

NameTitle
Jeff HoerlePresident
Moise Levy MdVice President
Eric SchweighofferBoard Member
Gabriele Richard MdBoard Member
Greg Licalzi JrBoard Member
Jonathan Dyer MdBoard Member
Keith Choate Md PhdBoard Member
Kimberly ColeBoard Member
Rachel SeeBoard Member
Robert SilvermanBoard Member
Tracie PretakBoard Member
William B Rizzo MdBoard Member
Larry SilvermanChief Financial Officer
Denise BenedettoSecretary
Revenue and Support

Revenue Composition

Contributions and Grants
$572,534
Program Service Revenue
$98,636
Investment Income
$25,965
Other Revenue
$4,882
All Other Contributions
$537,434
Change in Net Assets
$-274,647

Audited Revenue Reconciliation

Revenue per Audited Statements
$702,017
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$121,324
Total Revenue per Audited Statements
$823,341
Total Revenue per Form 990
$702,017
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$464,389
Other Expenses$330,011
Grants and Similar Amounts Paid$182,264
Total Fundraising Expense$117,358
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Comp Disqual Persons$227,457$23,142$73,872$324,471
Conferences and Meetings$160,200$98$284$160,582
Current Officers, Directors, Trustees, and Key Employees$85,233$15,981$5,327$106,541
Grants to Domestic Orgs$101,540--$101,540
Office Expenses$35,865$11,755$7,394$55,014
Foreign Grants$46,467--$46,467
Grants to Domestic Individuals$34,257--$34,257
Payroll Taxes$24,202$2,990$6,185$33,377
Occupancy$21,322$1,658$711$23,691
Fees for Service Investment Mgmnt Fees-$10,634-$10,634
Fees for Services Accounting-$9,965-$9,965
Insurance$1,193$4,352$40$5,585
Depreciation Depletion$2,672$208$89$2,969
Other Expenses$2,370$1,088$2,538$2,370
Fees for Services Other-$2,048-$2,048
Information Technology$56-$2$58
Total Functional Expenses$774,487$84,819$117,358$976,664

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$993,340
Expenses per Audited Statements$976,663
Total Expenses per Form 990$976,663
Expenses Not Reported on Form 990$16,677
Expenses Not Reported on Financial Statements$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Yale UniversityNew Haven, CT501(c)(3)Support Work in Disorders of Keratinization Research & Evaluate Infants & Children.$50,000
Yale UniversityNew Haven, CT501(c)(3)National Registry$50,000

International Summary

Offices
0
Employees
0
Spending
$0

International Compliance

Foreign grant records maintained
No
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$16,677
Fundraising Gross Income$16,677
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Testimonial Dinner$40,336$16,677-$16,677
Total Events$40,336$16,677$16,677$0
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

“After we receive the 990 from our independent preparer, the form is initially reviewed by the finance committee. The updated draft 990 is electronically submitted to each member of the board of directors for their review. The board then has the opportunity to ask questions before it is submitted to the internal revenue service.”

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

“The conflict of interest policy is reviewed annually by each board member. If there is a conflict, the board member is asked to remove themselves from the discussion and voting.”

Form 990, Part VI, Section B, Line 15

“The president and cfo polled local organizations, search firms, and employment agencies to obtain a sense of appropriate compensation. From year-to-year, a more detailed analysis of market rates has been performed to establish that compensation is commensurate with responsibilities and performance.”

Form 990, Part VI, Section C, Line 19

“Governing documents and conflict of interest policy are available upon request. Financial statements are published on our website and available through other websites such as guidestar and charity navigator.”

Filing and Contact Details

Filer

Filer Name
Foundation for Ichthyosis and Related
EIN
94-2738019
Phone
2159779400
Address
2616 N BROAD ST, COLMAR, PA 18915-9423
Doing Business As
First

Signing Officer

Name
Jean R Pickford
Title
CEO
Phone
2159779400
Signed
2017-03-10
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Jean R Pickford
Formed
1981
Legal Domicile
CA
Voting Board Members
14
Independent Board Members
14
Employees
6
Volunteers
400

Preparer

Firm
Baum Smith & Clemens Llp
Address
2128 N BROAD STREET, LANSDALE, PA 19446
Preparer
Lauren Zelnick
Phone
2153685755
Supplemental Narrative

Financial Statement Notes

PART V, LINE 4:

“Corpus of the endowment asset is held in perpetuity for the edna and myron curl endowment and the jane bukaty membership assistance fund based on donor-restriction. The endowment asset is invested in a mix of equity and fixed income securities. Investment earnings on the edna and myron curl endowment are appropriated to research and will be spent when first's board of directors determines that the earnings are accumulated to a level that will enable them to provide research grants. Earnings on the jane bukaty membership assistance fund are used to provide financial assistance to families with one or more affected individuals whose financial and reimbursement circumstances make obtaining adequate care and treatment difficult or impossible.”

PART X, LINE 2:

“The organization is required to recognize, measure, classify, and disclose in the financial statements uncertain tax positions taken or expected to be taken in the organization's tax returns. Management has determined that the organization does not have any uncertain tax positions and associated unrecognized benefits that materially impact the financial statements or related disclosures. Generally the organization is no longer subject to tax examinations by tax authorities for fiscal years prior to 2011.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Reduction of special events for direct expenses 16,677.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Reduction of special events for direct expenses 16,677.”

Raw XML AppendixShowing 400 of 657 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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IRS990/Desc0.2016 NATIONAL CONFERENCE - HELD IN SAN DIEGO IN JUNE 2016, THE CONFERENCE WAS THE HIGHEST ATTENDED IN FIRST'S HISTORY, TOTALING 473 MEMBERS,THEIR FAMILIES, RESEARCH INVESTIGATORS, EXPERT CLINICIANS, AND FIRST STAFF. THE BIENNIAL CONFERENCE DREW MEMBERS FROM ALL OVER THE WORLD. THE THREE-DAY EVENT EDUCATED, INSPIRED, AND CONNECTED OUR MEMBERS WITH EACH OTHER AND PROVIDED AN OPPORTUNITY TO CONSULT WITH KNOWLEDGEABLE DERMATOLOGISTS AND RESEARCHERS. OUR MEMBERS GAINED STRENGTH, COMFORT, AND RELIABLE INFORMATION TO CARRY ON THROUGHOUT THEIR LIVES. BECAUSE ICHTHYOSIS IS A RARE DISORDER, FIRST'S OVERARCHING GOAL IS TO HAVE AS MANY FAMILIES ATTEND THE CONFERENCE AS POSSIBLE TO HELP ALLEVIATE FEELINGS OF ISOLATION AND LONELINESS.
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IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt70
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IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt90
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IRS990/Form990PartVIISectionAGrp/TitleTxt0BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt1BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt2CHIEF FINANCIAL OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt3SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt4BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt5BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7VICE PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt14CEO
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IRS990/FSAuditedInd01
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IRS990/FundraisingDirectExpensesAmt016677
IRS990/FundraisingGrossIncomeAmt016677
IRS990/GainOrLossGrp/SecuritiesAmt0-47137
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IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
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IRS990/GrossReceiptsAmt01851882
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IRS990/IndoorTanningServicesInd00
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IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt02
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IRS990/InformationTechnologyGrp/TotalAmt058
IRS990/InsuranceGrp/FundraisingAmt040
IRS990/InsuranceGrp/ManagementAndGeneralAmt04352
IRS990/InsuranceGrp/ProgramServicesAmt01193
IRS990/InsuranceGrp/TotalAmt05585
IRS990/InvestmentIncomeGrp/ExclusionAmt073102
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IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0TO IMPROVE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt01920716
IRS990/NetAssetsOrFundBalancesEOYAmt01750717
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IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt0-47137
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetUnrelatedBusTxblIncmAmt02527
IRS990/NetUnrlzdGainsLossesInvstAmt0104647
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt0711
IRS990/OccupancyGrp/ManagementAndGeneralAmt01658
IRS990/OccupancyGrp/ProgramServicesAmt021322
IRS990/OccupancyGrp/TotalAmt023691
IRS990/OfficeExpensesGrp/FundraisingAmt07394
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt011755
IRS990/OfficeExpensesGrp/ProgramServicesAmt035865
IRS990/OfficeExpensesGrp/TotalAmt055014
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
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IRS990/OtherAssetsTotalGrp/EOYAmt03000
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IRS990/OtherExpensesGrp/Desc0GRASS ROOTS
IRS990/OtherExpensesGrp/Desc1STRATEGIC INITIATIVES
IRS990/OtherExpensesGrp/Desc2LICENSES
IRS990/OtherExpensesGrp/Desc3DUES AND SUBSCRIPTIONS
IRS990/OtherExpensesGrp/FundraisingAmt018962
IRS990/OtherExpensesGrp/FundraisingAmt11954
IRS990/OtherExpensesGrp/FundraisingAmt22538
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt00
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt1900
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt21088
IRS990/OtherExpensesGrp/ProgramServicesAmt018962
IRS990/OtherExpensesGrp/ProgramServicesAmt112691
IRS990/OtherExpensesGrp/ProgramServicesAmt20
IRS990/OtherExpensesGrp/ProgramServicesAmt32370
IRS990/OtherExpensesGrp/TotalAmt037924
IRS990/OtherExpensesGrp/TotalAmt115545
IRS990/OtherExpensesGrp/TotalAmt23626
IRS990/OtherExpensesGrp/TotalAmt32370
IRS990/OtherRevenueMiscGrp/BusinessCd0541800
IRS990/OtherRevenueMiscGrp/BusinessCd1900099
IRS990/OtherRevenueMiscGrp/Desc0ADVERTISING
IRS990/OtherRevenueMiscGrp/Desc1MISCELLANEOUS
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt0582
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt04300
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt1582
IRS990/OtherRevenueMiscGrp/UnrelatedBusinessRevenueAmt04300
IRS990/OtherRevenueTotalAmt04882
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayrollTaxesGrp/FundraisingAmt06185
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt02990
IRS990/PayrollTaxesGrp/ProgramServicesAmt024202
IRS990/PayrollTaxesGrp/TotalAmt033377
IRS990/PermanentlyRstrNetAssetsGrp/BOYAmt0110013
IRS990/PermanentlyRstrNetAssetsGrp/EOYAmt0110013
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt025000
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt025000
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt013115
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt03115
IRS990/PrincipalOfficerNm0JEAN R PICKFORD
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0NATIONAL CONFERENCE
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt098636
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt098636
IRS990/ProgSrvcAccomActy2Grp/Desc0RESEARCH PROGRAM: PROMOTES AND STRENGTHENS INVESTIGATION INTO THE CAUSES, TREATMENTS, AND POTENTIAL CURES FOR ICHTHYOSIS. THE PROGRAM IS MANAGED THROUGH THE NATIONAL OFFICE AND GUIDED BY THE RESEARCH REVIEW COMMITTEE. SURVEYS OF THE ICHTHYOSIS COMMUNITY HAVE INDICATED THAT RESEARCH IS A TOP PRIORITY. FIRST ADMINISTERS THIS PROGRAM TO PROMOTE PROMISING AVENUES OF INVESTIGATION BY RESEARCHERS WHO HAVE A NEW OR ESTABLISHED INTEREST IN ICHTHYOSIS.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0148007
IRS990/ProgSrvcAccomActy2Grp/GrantAmt0148007
IRS990/ProgSrvcAccomActyOtherGrp/Desc0THE ICHTHYOSIS AND RELATED SKIN TYPES ARE A SET OF RARE SKIN DISEASES WITH NUMEROUS SERIOUS MEDICAL COMPLICATIONS AS WELL AS PYSCHOSOCIAL ISSUES DUE TO THE PHYSICAL APPEARANCES OF CHRONIC SCALING, CRACKING, THICKENED, BLISTERING, AND EXTREMELY RED SKIN. ACCESS TO ACCURATE MEDICAL INFORMATION AND EMOTIONAL SUPPORT IS INVALUABLE. IN TODAY'S WORLD OF TECHNOLOGY, FIRST'S WEBSITE AND DIGITAL PROGRAM SERVICES ARE CLOSING THE GAP BETWEEN MEMBERS, FAMILIES, CAREGIVERS, PHYSICIANS, AND RESEARCHERS.FIRST ADMINISTERS AND FUNDS FOUR INDIVIDUAL GRANT AND SCHOLARSHIP PROGRAMS FOR ITS MEMBERS. SCHOLARSHIP FUNDS ARE AVAILABLE FOR AFFECTED STUDENTS TO ADVANCE THEIR POST-SECONDARY EDUCATION. TWO FUNDS ARE AVAILABLE FOR SMALL GRANTS TO HELP MEMBERS WITH THE PURCHASE OF NEW CREAMS, LOTIONS OR OTHER PRODUCTS TO HELP THEIR SKIN ROUTINE AND APPEARANCE. SCHOLARSHIPS ARE ALSO AVAILABLE FOR FAMILIES TO ATTEND THE NATIONAL CONFERENCE EVERY OTHER YEAR BY WAIVING THE REGISTRATION FEES AND PROVIDING OVERNIGHT ACCOMODATIONS.
IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt0468231
IRS990/ProgSrvcAccomActyOtherGrp/GrantAmt020700
IRS990/ProgSrvcAccomActyOtherGrp/RevenueAmt0582
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0701102
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0174089
IRS990/PYInvestmentIncomeAmt074310
IRS990/PYOtherExpensesAmt0245805
IRS990/PYOtherRevenueAmt04730
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0-14137
IRS990/PYSalariesCompEmpBnftPaidAmt0374385
IRS990/PYTotalExpensesAmt0794279
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0780142
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/ReconcilationRevenueExpnssAmt0-274647
IRS990/RegularMonitoringEnfrcInd01
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IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
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IRS990/ReportProgramRelatedInvstInd00
IRS990/RevenueAmt098636
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0175637
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0130134
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IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0798176
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0749381
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0571858
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt03393051
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IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt035050
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt016651
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IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt0582
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IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt04289
IRS990ScheduleA/OtherIncome170Grp/TotalAmt012155
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IRS990ScheduleA/PublicSupportCY170Pct00.76260
IRS990ScheduleA/PublicSupportPY170Pct00.77120
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IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0798176
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0749381
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0571858
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt03393051
IRS990ScheduleA/TotalSupportAmt03642351
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt04300
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus1YearAmt04125

Document Assets

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Filings

Displayed year

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

Open filing
Assets
$1,895,622
Liabilities
$144,905
Net assets
$1,750,717
Revenue
$702,017
Expenses
$976,664
Net income
-$274,647
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$3.28$0.05$3.24$1.97$1.18$0.79
2023Detailed filing. Detailed filing data is available for this year.$2.07$0.02$2.05$0.73$0.76$0.02
2022Detailed filing. Detailed filing data is available for this year.$1.96$0.03$1.93$0.71$0.89$0.18
2021Detailed filing. Detailed filing data is available for this year.$2.62$0.03$2.59$1.01$0.63$0.39
2020Detailed filing. Detailed filing data is available for this year.$2.30$0.12$2.18$0.59$0.65$0.06
2019Detailed filing. Detailed filing data is available for this year.$2.28$0.10$2.18$0.60$0.52$0.07
2018Detailed filing. Detailed filing data is available for this year.$2.12$0.03$2.09$0.83$0.66$0.17
2017Detailed filing. Detailed filing data is available for this year.$1.97$0.04$1.93$0.68$0.63$0.05
2016Detailed filing. Detailed filing data is available for this year.$1.90$0.14$1.75$0.70$0.98$0.27
2015Detailed filing. Detailed filing data is available for this year.$1.96$0.04$1.92$0.78$0.79$0.01
2014Detailed filing. Detailed filing data is available for this year.$2.09$0.03$2.06$0.96$0.82$0.14
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.91$0.02$1.89$0.59
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.67$0.00$1.66$0.71
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.63$0.00$1.63$0.51