Civic Intelligence

Foundation for Ichthyosis and Related Skin Types

990 • Fiscal year 2019 • EIN 94-2738019

Oct 01, 2018 to Sep 30, 2019 • Filed on Aug 17, 2020

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

41st percentile

0.04x

Higher debt load relative to assets than 41% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Liabilities / Revenue

62nd percentile

0.16x

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

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Net Margin

69th percentile

13%

Higher net margin than 69% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Top Officer Pay

57th percentile

$76,250

Higher top officer pay than 57% of similar nonprofits.

Top officer pay equals 12.8% of source-year revenue.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Asset Growth

61st percentile

7.2%

Faster asset growth than 61% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2018 to 2019

Revenue Growth

11th percentile

-28%

Faster revenue growth than 11% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2018 to 2019

Balance Sheet
Liabilities / Assets41st percentile

Assets

Up

$2,275,431

Up $153,211 (+7.2%) from 2018

Net Assets

Up

$2,179,726

Up $87,174 (+4.2%) from 2018

Liabilities

Up

$95,705

Up $66,037 (+223%) from 2018

Revenue And Expenses
Liabilities / Revenue62nd percentileNet Margin69th percentile

Revenue

Down

$598,014

Down $235,873 (-28%) from 2018

Expenses

Down

$523,059

Down $140,749 (-21%) from 2018

Net Income

Down

$74,955

Down $95,124 (-56%) from 2018

Historical Trend

Balance Sheet Trend

Asset Growth61st 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

2019

Assets$2,275,431
Liabilities$95,705
Net Assets$2,179,726
Open 2019 Filing

Operations Trend

Revenue Growth11th 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

2019

Revenue$598,014
Expenses$523,059
Net Income$74,955
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Oct 1, 2018 to Sep 30, 2019
Signed
Aug 17, 2020
Return Version
2018v3.2
Gross Receipts
$1,275,411
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$1,963,894$2,011,959▲ $48,065
Savings and Temporary Cash Investments$136,876$206,512▲ $69,636
Land, Buildings, and Equipment, Net$18,450$17,292▼ $1,158
Prepaid Expenses and Deferred Charges-$1,969-
Total Assets$2,122,220$2,275,431▲ $153,211
Other Assets Total$3,000$37,699▲ $34,699
Liabilities
Accounts Payable and Accrued Expenses$29,668$95,185▲ $65,517
Deferred Revenue-$520-
Total Liabilities$29,668$95,705▲ $66,037
Net Assets / Fund Balance
Unrestricted Net Assets$1,190,240$1,253,909▲ $63,669
Temporarily Rstr Net Assets$792,299$815,804▲ $23,505
Permanently Rstr Net Assets$110,013$110,013→ $0
Total Net Assets Fund Balance$2,092,552$2,179,726▲ $87,174
Total Liabilities and Net Assets / Fund Balance$2,122,220$2,275,431▲ $153,211

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$17,292$46,555$63,847

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2018$119,617---$119,617
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
Compensation and Service Providers
Top Officer Pay57th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Moureen WenikExecutive DirectorFT$76,250$76,250

Board Members and Trustees

NameTitle
Jeff HoerlePresident
Tracie Pretak1st Vice President
Mark Evans2nd Vice President
Bailey PretakBoard Member
Beth HampshireBoard Member
Brittany Craiglow MdBoard Member
Denise BenedettoBoard Member
Denise GassBoard Member
Gabriele Richard MdBoard Member
Jolie CinaBoard Member
Keith Choate Md PhdBoard Member
Kimberly ColeBoard Member
Latanya Benjamin MdBoard Member
Robert SilvermanBoard Member
Sean McternanChief Financial Officer
Brian SternSecretary
Revenue and Support

Revenue Composition

Contributions and Grants
$527,211
Program Service Revenue
$0
Investment Income
$70,803
Other Revenue
$0
All Other Contributions
$522,265
Change in Net Assets
$74,955

Audited Revenue Reconciliation

Revenue per Audited Statements
$598,014
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$12,219
Total Revenue per Audited Statements
$610,233
Total Revenue per Form 990
$598,014
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$231,927
Other Expenses$223,657
Grants and Similar Amounts Paid$67,475
Total Fundraising Expense$45,268
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$74,807$20,018$12,115$106,940
Current Officers, Directors, Trustees, and Key Employees$74,549$21,300$10,650$106,499
Grants to Domestic Orgs$51,000--$51,000
Office Expenses$40,491$5,064$5,062$50,617
Fees for Services Other$34,445$4,497$4,327$43,269
Conferences and Meetings$31,361$3,782$2,671$37,814
Occupancy$18,723$2,341$2,341$23,405
Payroll Taxes$12,933$3,570$1,985$18,488
Grants to Domestic Individuals$16,475--$16,475
Fees for Service Investment Mgmnt Fees-$11,019-$11,019
Depreciation Depletion$5,139$643$643$6,425
Information Technology$3,545$506$1,013$5,064
Insurance$2,229$279$279$2,787
Other Expenses$806$598$598$806
Total Functional Expenses$400,512$77,279$45,268$523,059

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$523,059
Total Expenses per Audited Statements$523,059
Total Expenses per Form 990$523,059
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)National Registry Support$50,000
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 A, Line 2

“Bailey pretak is tracie pretak's daughter.”

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
Christopher Boynton
Title
Chief Executive Director
Phone
2159779400
Signed
2020-08-17
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Christopher Boynton
Formed
1981
Legal Domicile
CA
Voting Board Members
16
Independent Board Members
14
Employees
6
Volunteers
80

Preparer

Firm
Baum Smith & Clemens Llp
Address
2060 DETWILER RD SUITE 125, HARLEYSVILLE, PA 19438
Preparer
Ayanna Weaver 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.”

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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/Form990PartVIISectionAGrp/TitleTxt4SECRETARY
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IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt7BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt14BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt15BOARD MEMBER
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IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0TO IMPROVE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES.
IRS990/MoreThan5000KToIndividualsInd00
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IRS990/OccupancyGrp/TotalAmt023405
IRS990/OfficeExpensesGrp/FundraisingAmt05062
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt05064
IRS990/OfficeExpensesGrp/ProgramServicesAmt040491
IRS990/OfficeExpensesGrp/TotalAmt050617
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
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IRS990/OtherAssetsTotalGrp/EOYAmt037699
IRS990/OtherChangesInNetAssetsAmt00
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IRS990/OtherExpensesGrp/Desc1DUES AND SUBSCRIPTIONS
IRS990/OtherExpensesGrp/Desc2LICENSES
IRS990/OtherExpensesGrp/Desc3STRATEGIC INITIATIVES
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IRS990/OtherExpensesGrp/FundraisingAmt1757
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IRS990/OtherExpensesGrp/ManagementAndGeneralAmt1757
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IRS990/OtherExpensesGrp/ProgramServicesAmt16056
IRS990/OtherExpensesGrp/ProgramServicesAmt24788
IRS990/OtherExpensesGrp/ProgramServicesAmt3806
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IRS990/OtherExpensesGrp/TotalAmt17570
IRS990/OtherExpensesGrp/TotalAmt25984
IRS990/OtherExpensesGrp/TotalAmt3806
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt012115
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt020018
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt074807
IRS990/OtherSalariesAndWagesGrp/TotalAmt0106940
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayrollTaxesGrp/FundraisingAmt01985
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IRS990/PoliticalCampaignActyInd00
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IRS990/PrincipalOfficerNm0CHRISTOPHER BOYNTON
IRS990/ProfessionalFundraisingInd00
IRS990/ProgSrvcAccomActy2Grp/Desc0ONE OF THE CORNERSTONES OF FIRST'S EMPHASIS ON RESEARCH IS ITS SUPPORT OF THE YALE ICHTHYOSIS REGISTRY BOTH FINANCIALLY AND THROUGH ITS PROMOTION ACROSS ITS COMMUNICATION CHANNELS. CRITICAL TO IMPROVING THE MANAGEMENT OF THEIR CONDITION, PARTICIPATION IN THE YALE REGISTRY PROVIDES EACH AFFECTED INDIVIDUAL A GENETIC DIAGNOSIS OF THEIR PARTICULAR TYPE OF ICHTHYOSIS OR OTHER SKIN TYPE. THE REGISTRY IS ALSO VITALLY IMPORTANT TO THE RESEARCH COMMUNITY AND WAS REFERENCED IN NUMEROUS STUDIES AND MANUSCRIPTS IN THE PAST YEAR. THE REGISTRY ALSO SERVES TO PROVIDE RESEARCH OPPORTUNITIES, INCREASED INTEREST IN ICHTHYOSIS AND POSITIVE OPPORTUNITIES FOR TRAINING THE NEXT GENERATION OF PHYSICIAN SCIENTISTS.
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IRS990/PYOtherRevenueAmt0168
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IRS990/PYSalariesCompEmpBnftPaidAmt0191744
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IRS990/PYTotalRevenueAmt0833887
IRS990/QuidProQuoContributionsInd00
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IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
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IRS990/ReportProgramRelatedInvstInd00
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IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0701102
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Document Assets

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Filings

Displayed year

2019 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,275,431
Liabilities
$95,705
Net assets
$2,179,726
Revenue
$598,014
Expenses
$523,059
Net income
$74,955
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