Civic Intelligence

Foundation for Ichthyosis and Related Skin Types

990 • Fiscal year 2017 • EIN 94-2738019

Oct 01, 2016 to Sep 30, 2017 • Filed on Jun 12, 2018

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

32nd percentile

0.02x

Higher debt load relative to assets than 32% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Liabilities / Revenue

40th percentile

0.06x

Higher debt load relative to revenue than 40% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Net Margin

62nd percentile

7.8%

Higher net margin than 62% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Top Officer Pay

71st percentile

$105,727

Higher top officer pay than 71% of similar nonprofits.

Top officer pay equals 15.5% of source-year revenue.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2017

Asset Growth

52nd percentile

3.7%

Faster asset growth than 52% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2016 to 2017

Revenue Growth

31st percentile

-2.6%

Faster revenue growth than 31% of similar nonprofits.

2017 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2016 to 2017

Assets

Up

$1,966,454

Up $70,832 (+3.7%) from 2016

Net Assets

Up

$1,925,778

Up $175,061 (+10.0%) from 2016

Liabilities

Down

$40,676

Down $104,229 (-72%) from 2016

Revenue

Down

$683,721

Down $18,296 (-2.6%) from 2016

Expenses

Down

$630,215

Down $346,449 (-35%) from 2016

Net Income

Up

$53,506

Up $328,153 (+119%) from 2016

Historical Trend

Balance Sheet Trend

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

2017

Assets$1,966,454
Liabilities$40,676
Net Assets$1,925,778

Operations Trend

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

2017

Revenue$683,721
Expenses$630,215
Net Income$53,506
Jump To
Filing Snapshot
Filing Period
Oct 1, 2016 to Sep 30, 2017
Signed
Jun 12, 2018
Return Version
2016v3.0
Gross Receipts
$1,195,120
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$1,701,715$1,798,488▲ $96,773
Savings and Temporary Cash Investments$130,134$139,185▲ $9,051
Land, Buildings, and Equipment, Net$32,658$25,043▼ $7,615
Pledges and Grants Receivable$25,000--
Prepaid Expenses and Deferred Charges$3,115$738▼ $2,377
Total Assets$1,895,622$1,966,454▲ $70,832
Other Assets Total$3,000$3,000→ $0
Liabilities
Grants Payable$100,000--
Accounts Payable and Accrued Expenses$44,905$40,676▼ $4,229
Total Liabilities$144,905$40,676▼ $104,229
Net Assets / Fund Balance
Unrestricted Net Assets$995,221$1,125,159▲ $129,938
Temporarily Rstr Net Assets$645,483$690,606▲ $45,123
Permanently Rstr Net Assets$110,013$110,013→ $0
Total Net Assets Fund Balance$1,750,717$1,925,778▲ $175,061
Total Liabilities and Net Assets / Fund Balance$1,895,622$1,966,454▲ $70,832

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$25,043$33,537$58,580

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
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
2012$124,592$950▲ $1,623$2,800$124,365
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Jean R PickfordCEO, FormerFT$105,727$105,727
Moureen WenikActing Executive DirectorFT$57,546$57,546

Board Members and Trustees

NameTitle
Jeff HoerlePresident
Moise Levy MdVice President
Denise EiserBoard Member
Eric SchweighofferBoard Member
Gabriele Richard MdBoard Member
Keith Choate Md PhdBoard Member
Kimberly ColeBoard Member
Mark EvansBoard 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
$595,647
Program Service Revenue
$9,700
Investment Income
$70,222
Other Revenue
$8,152
All Other Contributions
$586,163
Change in Net Assets
$53,506

Audited Revenue Reconciliation

Revenue per Audited Statements
$683,721
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$121,555
Total Revenue per Audited Statements
$805,276
Total Revenue per Form 990
$683,721
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$362,931
Other Expenses$251,004
Total Fundraising Expense$128,077
Grants and Similar Amounts Paid$16,280
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Comp Disqual Persons$168,388$12,072$70,310$250,770
Current Officers, Directors, Trustees, and Key Employees$57,033$12,221$12,221$81,475
Office Expenses$48,007$9,718$11,903$69,628
Payroll Taxes$20,971$2,199$7,516$30,686
Occupancy$22,179$1,725$739$24,643
Information Technology$16,915-$523$17,438
Fees for Service Investment Mgmnt Fees-$16,683-$16,683
Grants to Domestic Individuals$16,280--$16,280
Conferences and Meetings$12,917$52$381$13,350
Fees for Services Accounting-$10,749-$10,749
Depreciation Depletion$6,854$533$228$7,615
All Other Expenses$5,447-$130$5,577
Insurance$1,137$4,293$38$5,468
Other Expenses$30,666$1,114$2,600$3,714
Fees for Services Other-$2,118-$2,118
Total Functional Expenses$428,282$73,856$128,077$630,215

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$630,215
Total Expenses per Audited Statements$630,215
Total Expenses per Form 990$630,215
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
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 board of directors (bod) for their review.

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 employement agencies are polled to obtain a sense of appropriate compenstation. A more detailed anaylsis of market rates has been performed to establish compenstation is commensurate with responsiblities 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
Acting Executive Director
Phone
2159779400
Signed
2018-06-12
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Moureen Wenik
Formed
1981
Legal Domicile
CA
Voting Board Members
13
Independent Board Members
13
Employees
5
Volunteers
400

Preparer

Firm
Baum Smith & Clemens Llp
Address
2128 N BROAD STREET, LANSDALE, PA 19446
Preparer
Rose Hartle 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 2014.

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IRS990/Form990PartVIISectionAGrp/TitleTxt3SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt4BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt5BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt14CEO, FORMER
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IRS990/LocalChaptersInd00
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IRS990/OfficeExpensesGrp/FundraisingAmt011903
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt09718
IRS990/OfficeExpensesGrp/ProgramServicesAmt048007
IRS990/OfficeExpensesGrp/TotalAmt069628
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
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IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayrollTaxesGrp/FundraisingAmt07516
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt02199
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IRS990/PoliticalCampaignActyInd00
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IRS990/PrincipalOfficerNm0MOUREEN WENIK
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IRS990/PYTotalRevenueAmt0702017
IRS990/QuidProQuoContributionsInd01
IRS990/QuidProQuoContriDisclInd01
IRS990/ReconcilationRevenueExpnssAmt053506
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
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IRS990/ReportOtherLiabilitiesInd00
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IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0798176
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IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt041510
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IRS990ScheduleA/PublicOrganization170Ind0X
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IRS990ScheduleA/SubstantialContributorsTotAmt0594820
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
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IRS990ScheduleA/TotalSupportAmt03701348
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt05100
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus1YearAmt04300
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IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt019159
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
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IRS990/ScheduleBRequiredInd01

Document Assets

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Filings

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
Peer Organizations

Similar nonprofits based on the same Siviq industry and scale cohort. 2017 filings • 501(c)3 • $1M-$5M nonprofits