Civic Intelligence

Foundation for Ichthyosis and Related Skin Types

990 • Fiscal year 2018 • EIN 94-2738019

Oct 01, 2017 to Sep 30, 2018 • Filed on May 28, 2019

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

29th percentile

0.01x

Higher debt load relative to assets than 29% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Liabilities / Revenue

33rd percentile

0.04x

Higher debt load relative to revenue than 33% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Net Margin

78th percentile

20%

Higher net margin than 78% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Top Officer Pay

52nd percentile

$67,129

Higher top officer pay than 52% of similar nonprofits.

Top officer pay equals 8.1% of source-year revenue.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2018

Asset Growth

69th percentile

7.9%

Faster asset growth than 69% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2017 to 2018

Revenue Growth

76th percentile

22%

Faster revenue growth than 76% of similar nonprofits.

2018 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2017 to 2018

Balance Sheet
Liabilities / Assets29th percentile

Assets

Up

$2,122,220

Up $155,766 (+7.9%) from 2017

Net Assets

Up

$2,092,552

Up $166,774 (+8.7%) from 2017

Liabilities

Down

$29,668

Down $11,008 (-27%) from 2017

Revenue And Expenses
Liabilities / Revenue33rd percentileNet Margin78th percentile

Revenue

Up

$833,887

Up $150,166 (+22%) from 2017

Expenses

Up

$663,808

Up $33,593 (+5.3%) from 2017

Net Income

Up

$170,079

Up $116,573 (+218%) from 2017

Historical Trend

Balance Sheet Trend

Asset Growth69th 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

2018

Assets$2,122,220
Liabilities$29,668
Net Assets$2,092,552
Open 2018 Filing

Operations Trend

Revenue Growth76th 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

2018

Revenue$833,887
Expenses$663,808
Net Income$170,079
Open 2018 Filing
Jump To
Filing Snapshot
Filing Period
Oct 1, 2017 to Sep 30, 2018
Signed
May 28, 2019
Return Version
2017v2.3
Gross Receipts
$1,725,059
Mission and Program Overview

Mission

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

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

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,798,488$1,963,894▲ $165,406
Savings and Temporary Cash Investments$139,185$136,876▼ $2,309
Land, Buildings, and Equipment, Net$25,043$18,450▼ $6,593
Prepaid Expenses and Deferred Charges$738--
Total Assets$1,966,454$2,122,220▲ $155,766
Other Assets Total$3,000$3,000→ $0
Liabilities
Accounts Payable and Accrued Expenses$40,676$29,668▼ $11,008
Total Liabilities$40,676$29,668▼ $11,008
Net Assets / Fund Balance
Unrestricted Net Assets$1,125,159$1,190,240▲ $65,081
Temporarily Rstr Net Assets$690,606$792,299▲ $101,693
Permanently Rstr Net Assets$110,013$110,013→ $0
Total Net Assets Fund Balance$1,925,778$2,092,552▲ $166,774
Total Liabilities and Net Assets / Fund Balance$1,966,454$2,122,220▲ $155,766

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$18,450$40,130$58,580

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2017$119,617---$119,617
2016$120,856-▲ $291$1,530$119,617
2015$122,756$300-$2,200$120,856
2014$122,006$750--$122,756
2013$124,365$550▲ $491$3,400$122,006
Compensation and Service Providers
Top Officer Pay52nd percentile

Employees

NameTitleFull / Part TimeBaseTotal
Moureen WenikActing Executive DirectorFT$67,129$67,129

Board Members and Trustees

NameTitle
Jeff HoerlePresident
Mark Evans2nd Vice President
Tracie PretakVice President
Denise GassBoard Member
Gabriele Richard MdBoard Member
Keith Choate Md PhdBoard Member
Kimberly ColeBoard Member
Robert SilvermanBoard Member
Sean McternanBoard Member
Larry SilvermanChief Financial Officer
Denise BenedettoSecretary
Revenue and Support

Revenue Composition

Contributions and Grants
$595,765
Program Service Revenue
$128,859
Investment Income
$109,095
Other Revenue
$168
All Other Contributions
$587,125
Change in Net Assets
$170,079

Audited Revenue Reconciliation

Revenue per Audited Statements
$833,887
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$-3,305
Total Revenue per Audited Statements
$830,582
Total Revenue per Form 990
$833,887
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$340,151
Salaries, Compensation, and Employee Benefits$191,744
Grants and Similar Amounts Paid$131,913
Total Fundraising Expense$47,912
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Conferences and Meetings$180,223$340$409$180,972
Grants to Domestic Orgs$110,500--$110,500
Other Salaries and Wages$82,767$11,314$7,166$101,247
Current Officers, Directors, Trustees, and Key Employees$54,097$7,213$10,819$72,129
Office Expenses$22,974$11,728$6,924$41,626
Occupancy$23,337$1,815$778$25,930
Grants to Domestic Individuals$21,413--$21,413
Payroll Taxes$14,580$1,890$1,898$18,368
Fees for Services Accounting-$13,795-$13,795
Fees for Service Investment Mgmnt Fees-$13,333-$13,333
Depreciation Depletion$5,934$461$198$6,593
Insurance$1,004$4,559$33$5,596
Information Technology$3,871-$120$3,991
Other Expenses$3,409$1,046$2,440$3,409
Fees for Services Other-$1,821-$1,821
All Other Expenses$200--$200
Total Functional Expenses$546,581$69,315$47,912$663,808

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$663,808
Total Expenses per Audited Statements$663,808
Total Expenses per Form 990$663,808
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Yale UniversityNew Haven, CT501 (c)(3)Research$50,000
Yale UniversityNew Haven, CT501 (c)(3)National Registry Support$50,000
Pediatric Dermatolgoy Research Alliance (society for Pediatric Dermatology)Indianapolis, IN501 (c)(3)Support of 2018 Retinoids Consensus Meeting$10,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
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 11B

“Once prepared, the form 990 is reviewed by the finance committee. The updated form is electronically sent to our bod for their review. The bod is able to comment and ask questions prior to form 990 being submitted to the irs.”

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

“The board annually reviews the conflict of interest policy. The policy requires board members to recuse themselves from discussion or voting if the topic represents a conflict of interest.”

Form 990, Part VI, Section B, Line 15

“Local organizations, search firms, and employment agencies are polled to obtain a sense of appropriate compensation. A more detailed analysis of market rates has been performed to establish 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
Moureen Wenik
Title
Executive Director
Phone
2159779400
Signed
2019-05-28
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Moureen Wenik
Formed
1981
Legal Domicile
CA
Voting Board Members
11
Independent Board Members
11
Employees
6
Volunteers
400

Preparer

Firm
Baum Smith & Clemens Llp
Address
2060 DETWILER RD SUITE 125, HARLEYSVILLE, PA 19438
Preparer
Michael Lombardo CPA
Phone
2153685755
Supplemental Narrative

Additional Explanations

Additional Information

“The 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, physicans, 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.”

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 the organization's board of directors determine enough interest has 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 2015.”

Raw XML AppendixShowing 400 of 578 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/Desc0NATIONAL CONFERENCE IN NASHVILLE. THE MEETING ENROLLMENT EXCEEDED EXPECTATIONS, AND WAS THE HIGHEST ATTENDED CONFERENCE TO DATE WITH 503 ATTENDEES AT THIS MEETING, 40% OF THE ATTENDEES WERE FIRST TIME ATTENDEES. REGISTRANTS TRAVELED FROM MANY PARTS OF THE UNITED STATES, CANADA AND PARTS OF THE GLOBE AS FAR AS NAMIBIA. THE CONFERENCE ALLOWED PARTICIPANTS TO LEARN ABOUT THE MOST CURRENT RESEARCH IN THE AREA OF THE ICHTHYOSES. CLINICAL SCREENINGS WERE AVAILABLE TO ALL AFFECTED INDIVIDUALS, AND PARTICIPATION SAW ENROLLMENT OF 80 KINDRED IN THE NATIONAL REGISTRY FOR ICHTHYOSIS. THERE WERE NUMEROUS BREAKOUT SESSIONS HELD IN AREAS OF CARE AND TREATMENT, ADVOCATING FOR AN INDIVIDUAL, OR A CHILD WHEN LIVING WITH A RARE SKIN CONDITION, AS WELL AS A GENERAL SESSION TO UNDERSTAND THE ROLE OF PHARMA AND RESEARCH. THE ACCESS THE ATTENDEES HAD TO THE EXPERT PHYSICIANS AND RESEARCHERS DURING THE THREE DAY MEETING WAS INVALUABLE. CHILDCARE FOR CHILDREN 12 AND UNDER WAS PROVIDED TO ALLOW PARENTS, GRANDPARENTS, EXTENDED FAMILY AND FRIENDS THE AVAILABILITY TO ATTEND THE NUMEROUS SESSIONS. THE TEENS ENGAGED IN AN OFF-SITE FIELD TRIP TO STRENGTHEN THEIR FRIENDSHIPS, AND THE FOUNDATION ORGANIZED A FRIDAY EVENING EVENT FOR THOSE WANTING TO TOUR NASHVILLE BY TROLLEY.
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IRS990/Form990PartVIISectionAGrp/TitleTxt1CHIEF FINANCIAL OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt2SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt32ND VICE PRESIDENT
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IRS990/Form990PartVIISectionAGrp/TitleTxt11ACTING EXECUTIVE DIRECTOR
IRS990/Form990ProvidedToGvrnBodyInd01
IRS990/Form990TFiledInd01
IRS990/FormationYr01981
IRS990/FormerOfcrEmployeesListedInd00
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd01
IRS990/FundraisingActivitiesInd00
IRS990/GainOrLossGrp/SecuritiesAmt044444
IRS990/GamingActivitiesInd00
IRS990/GoverningBodyVotingMembersCnt011
IRS990/GrantAmt08672
IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt021413
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt021413
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0110500
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0110500
IRS990/GrantsToIndividualsInd01
IRS990/GrantsToOrganizationsInd01
IRS990/GrantToRelatedPersonInd00
IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt0935616
IRS990/GrossReceiptsAmt01725059
IRS990/GroupReturnForAffiliatesInd00
IRS990/IncludeFIN48FootnoteInd01
IRS990/IndependentAuditFinclStmtInd01
IRS990/IndependentVotingMemberCnt011
IRS990/IndivRcvdGreaterThan100KCnt00
IRS990/IndoorTanningServicesInd00
IRS990/InfoInScheduleOPartIIIInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt0120
IRS990/InformationTechnologyGrp/ProgramServicesAmt03871
IRS990/InformationTechnologyGrp/TotalAmt03991
IRS990/InsuranceGrp/FundraisingAmt033
IRS990/InsuranceGrp/ManagementAndGeneralAmt04559
IRS990/InsuranceGrp/ProgramServicesAmt01004
IRS990/InsuranceGrp/TotalAmt05596
IRS990/InvestmentIncomeGrp/ExclusionAmt064651
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt064651
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt01798488
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01963894
IRS990/IRPDocumentCnt03
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt040130
IRS990/LandBldgEquipBasisNetGrp/BOYAmt025043
IRS990/LandBldgEquipBasisNetGrp/EOYAmt018450
IRS990/LandBldgEquipCostOrOtherBssAmt058580
IRS990/LegalDomicileStateCd0CA
IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt0891172
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/MoreThan5000KToOrgInd00
IRS990/NetAssetsOrFundBalancesBOYAmt01925778
IRS990/NetAssetsOrFundBalancesEOYAmt02092552
IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt044444
IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt044444
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt0-3305
IRS990/NondeductibleContributionsInd00
IRS990/OccupancyGrp/FundraisingAmt0778
IRS990/OccupancyGrp/ManagementAndGeneralAmt01815
IRS990/OccupancyGrp/ProgramServicesAmt023337
IRS990/OccupancyGrp/TotalAmt025930
IRS990/OfficeExpensesGrp/FundraisingAmt06924
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt011728
IRS990/OfficeExpensesGrp/ProgramServicesAmt022974
IRS990/OfficeExpensesGrp/TotalAmt041626
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherAssetsTotalGrp/BOYAmt03000
IRS990/OtherAssetsTotalGrp/EOYAmt03000
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherExpensesGrp/Desc0GRASS ROOTS
IRS990/OtherExpensesGrp/Desc1DUES AND SUBSCRIPTIONS
IRS990/OtherExpensesGrp/Desc2LICENSES
IRS990/OtherExpensesGrp/Desc3STRATEGIC INITIATIVES
IRS990/OtherExpensesGrp/FundraisingAmt017127
IRS990/OtherExpensesGrp/FundraisingAmt12440
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt01046
IRS990/OtherExpensesGrp/ProgramServicesAmt017127
IRS990/OtherExpensesGrp/ProgramServicesAmt15145
IRS990/OtherExpensesGrp/ProgramServicesAmt23409
IRS990/OtherExpensesGrp/TotalAmt034254
IRS990/OtherExpensesGrp/TotalAmt15145
IRS990/OtherExpensesGrp/TotalAmt23486
IRS990/OtherExpensesGrp/TotalAmt33409
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/Desc0MISCELLANEOUS
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt0168
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt0168
IRS990/OtherRevenueTotalAmt0168
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt07166
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt011314
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt082767
IRS990/OtherSalariesAndWagesGrp/TotalAmt0101247
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayrollTaxesGrp/FundraisingAmt01898
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt01890
IRS990/PayrollTaxesGrp/ProgramServicesAmt014580
IRS990/PayrollTaxesGrp/TotalAmt018368
IRS990/PermanentlyRstrNetAssetsGrp/BOYAmt0110013
IRS990/PermanentlyRstrNetAssetsGrp/EOYAmt0110013
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt0738
IRS990/PrincipalOfficerNm0MOUREEN WENIK
IRS990/ProfessionalFundraisingInd00
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0NATIONAL CONFERENCE
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt0128859
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt0128859
IRS990/ProgSrvcAccomActy2Grp/Desc0FIRST SUPPORTS AND PUBLICIZES THE REGISTRY AT YALE. THE REGISTRY ENROLLED 87 KINDREDS, WITH GENETIC DIAGNOSES PROVIDED TO 118 FAMILIES, INCLUDING 80 FAMILIES FROM THE POP-UP CLINIC AT FIRST'S NATIONAL CONFERENCE 2018. REGISTRY SUPPORT ENABLED SEVEN PUBLICATIONS, INCLUDING A HIGHLY CITED MANUSCRIPT ON THE PHENOTYPIC SPECTRUM ASSOCIATED WITH CARD14 MUTATIONS AND THE RESPONSE OF PATIENTS TO THERAPY WITH USTEKINUMAB. A COLLABORATION RESULTED IN A NEW GENE PERP, FOR A SEVERE DISORDER FEATURING PALMOPLANTAR KERATODERMA. TWO NEW MANUSCRIPTS REPORTING NEW GENETIC CAUSES OF ICHTHYOSIS ARE IN PREPARATION. WORK IN IMMUNOPHENOTYPING ICHTHYOSIS IS ALSO SUPPORTED BY THE REGISTRY. THERE HAVE BEEN POSITIVE OPPORTUNITIES FOR TRAINING THE NEXT GENERATION OF PHYSICIAN SCIENTISTS WITH AN INTEREST IN ICHTHYOSIS.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt050000
IRS990/ProgSrvcAccomActy2Grp/GrantAmt050000
IRS990/ProgSrvcAccomActy3Grp/Desc0FIRST SUPPORTS MEMBER CREATED AWARENESS AND FUNDRAISING EVENTS THROUGH VENUE AND TICKET ACQUISITION AS WELL AS EDUCATIONAL MATERIALS. AWARENESS BRIDGES A GAP BETWEEN THE COMMUNITY WHERE OUR MEMBERS LIVE, AND THE PUBLIC'S UNDERSTANDING OF ICHTHYOSIS.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt0328605
IRS990/ProgSrvcAccomActy3Grp/GrantAmt073241
IRS990/ProgSrvcAccomActy3Grp/RevenueAmt0168
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0595647
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt016280
IRS990/PYInvestmentIncomeAmt070222
IRS990/PYOtherExpensesAmt0251004
IRS990/PYOtherRevenueAmt08152
IRS990/PYProgramServiceRevenueAmt09700
IRS990/PYRevenuesLessExpensesAmt053506
IRS990/PYSalariesCompEmpBnftPaidAmt0362931
IRS990/PYTotalExpensesAmt0630215
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0683721
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/ReconcilationRevenueExpnssAmt0170079
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/RevenueAmt0128859
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0139185
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0136876
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0595765
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0595647
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0572534
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0701102
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0798176
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt03263224
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt064651
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt049196
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt073102
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt055573
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt041510
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt0284032
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt0337284
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt0168
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt03052
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus2YearsAmt0582
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt0605
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt03851
IRS990ScheduleA/OtherIncome170Grp/TotalAmt08258
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.74710
IRS990ScheduleA/PublicSupportPY170Pct00.76240
IRS990ScheduleA/PublicSupportTotal170Amt02669769
IRS990ScheduleA/SubstantialContributorsTotAmt0593455
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0595765
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0595647
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0572534
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0701102
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0798176
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt03263224
IRS990ScheduleA/TotalSupportAmt03573497
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt00
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus1YearAmt05100
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus2YearsAmt04300
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus3YearsAmt04125
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus4YearsAmt04458
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt017983
IRS990/ScheduleBRequiredInd01
IRS990ScheduleD/CYEndwmtFundGrp/BeginningYearBalanceAmt0119617
IRS990ScheduleD/CYEndwmtFundGrp/EndYearBalanceAmt0119617
IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/BeginningYearBalanceAmt0120856
IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/EndYearBalanceAmt0119617
IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/InvestmentEarningsOrLossesAmt0291
IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/OtherExpendituresAmt01530
IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/BeginningYearBalanceAmt0122756
IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/ContributionsAmt0300
IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/EndYearBalanceAmt0120856
IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/OtherExpendituresAmt02200
IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/BeginningYearBalanceAmt0122006
IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/ContributionsAmt0750
IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/EndYearBalanceAmt0122756
IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/BeginningYearBalanceAmt0124365
IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/ContributionsAmt0550
IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/EndYearBalanceAmt0122006
IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/InvestmentEarningsOrLossesAmt0491
IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/OtherExpendituresAmt03400
IRS990ScheduleD/EndowmentsHeldRelatedOrgInd00
IRS990ScheduleD/EndowmentsHeldUnrelatedOrgInd00
IRS990ScheduleD/EquipmentGrp/BookValueAmt018450
IRS990ScheduleD/EquipmentGrp/DepreciationAmt040130
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt058580
IRS990ScheduleD/ExpensesNotReportedAmt00
IRS990ScheduleD/ExpensesNotRptFinclStmtAmt00
IRS990ScheduleD/ExpensesSubtotalAmt0663808
IRS990ScheduleD/FootnoteTextInd0X
IRS990ScheduleD/NetUnrealizedGainsInvstAmt0-3305
IRS990ScheduleD/PrmnntEndowmentBalanceEOYPct00.91970
IRS990ScheduleD/RevenueNotReportedAmt0-3305
IRS990ScheduleD/RevenueNotReportedFinclStmtAmt00
IRS990ScheduleD/RevenueSubtotalAmt0833887
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0CORPUS 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 THE ORGANIZATION'S BOARD OF DIRECTORS DETERMINE ENOUGH INTEREST HAS 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.
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt1THE 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 2015.

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Filings

Displayed year

2018 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,122,220
Liabilities
$29,668
Net assets
$2,092,552
Revenue
$833,887
Expenses
$663,808
Net income
$170,079
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