Civic Intelligence

Foundation for Ichthyosis and Related Skin Types

990 • Fiscal year 2020 • EIN 94-2738019

Oct 01, 2019 to Sep 30, 2020 • Filed on Sep 21, 2022

Organization ProfileWWW.FIRSTSKINFOUNDATION.ORG

View Organization Page

PO Box 1067Lansdale, PA 19446

(215) 977-9400

Siviq Scores

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

Liabilities / Assets

41st percentile

0.05x

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

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Liabilities / Revenue

59th percentile

0.20x

Higher debt load relative to revenue than 59% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Net Margin

22nd percentile

-11%

Higher net margin than 22% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Top Officer Pay

51st percentile

$61,094

Higher top officer pay than 51% of similar nonprofits.

Top officer pay equals 10.3% of source-year revenue.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Asset Growth

36th percentile

1.2%

Faster asset growth than 36% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Revenue Growth

46th percentile

-1.1%

Faster revenue growth than 46% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets41st percentile

Assets

Up

$2,302,341

Up $26,910 (+1.2%) from 2019

Net Assets

Up

$2,184,316

Up $4,590 (+0.2%) from 2019

Liabilities

Up

$118,025

Up $22,320 (+23%) from 2019

Revenue And Expenses
Liabilities / Revenue59th percentileNet Margin22nd percentile

Revenue

Down

$591,429

Down $6,585 (-1.1%) from 2019

Expenses

Up

$653,951

Up $130,892 (+25%) from 2019

Net Income

Down

-$62,522

Down $137,477 (-183%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth36th 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

2020

Assets$2,302,341
Liabilities$118,025
Net Assets$2,184,316
Open 2020 Filing

Operations Trend

Revenue Growth46th 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

2020

Revenue$591,429
Expenses$653,951
Net Income-$62,522
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Oct 1, 2019 to Sep 30, 2020
Signed
Sep 21, 2022
Return Version
2019v5.0
Gross Receipts
$2,594,756
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$2,011,959$2,069,051▲ $57,092
Cash and Non-Interest-Bearing Accounts$206,512$141,422▼ $65,090
Land, Buildings, and Equipment, Net$17,292$39,111▲ $21,819
Prepaid Expenses and Deferred Charges$1,969$1,965▼ $4
Total Assets$2,275,431$2,302,341▲ $26,910
Other Assets Total$37,699$50,792▲ $13,093
Liabilities
Accounts Payable and Accrued Expenses$95,185$72,074▼ $23,111
Other Liabilities-$45,951-
Deferred Revenue$520--
Total Liabilities$95,705$118,025▲ $22,320
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,253,909$1,316,120▲ $62,211
Net Assets With Donor Restrictions$925,817$868,196▼ $57,621
Total Net Assets Fund Balance$2,179,726$2,184,316▲ $4,590
Total Liabilities and Net Assets / Fund Balance$2,275,431$2,302,341▲ $26,910

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$34,898$31,203$66,101
Equipment$4,213$2,909$7,122

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2019$110,013----
2018$119,617----
2017$119,617----
2016$120,856-▲ $291$1,530-
2015$122,756$300-$2,200-
Compensation and Service Providers
Top Officer Pay51st percentile

Employees

NameTitleFull / Part TimeBaseTotal
Christopher BoyntonChief Exec.FT$61,094$61,094
Maureen WenikFmr Chief ExFT$7,077$7,077

Board Members and Trustees

NameTitle
Jeff HoerlePresident
Bailey PretakBoard Member
Beth HampshireBoard Member
Brian SternBoard Member
Brittany Craiglow MdBoard Member
Daniel SiegelBoard Member
Gabriele Richard MdBoard Member
Jolie CinaBoard Member
Keith Choate Md PhdBoard Member
Latanya Benjamin MdBoard Member
Tracie Pretak1st Vice Pre
Mark Evans2nd Vice Pre
Sean McternanCFO
Denise BenedettoSecretary
Revenue and Support

Revenue Composition

Contributions and Grants
$495,890
Program Service Revenue
$0
Investment Income
$95,539
Other Revenue
$0
All Other Contributions
$490,490
Change in Net Assets
$-62,522

Audited Revenue Reconciliation

Revenue per Audited Statements
$591,429
Revenue Not Reported on Form 990
$67,112
Total Revenue per Audited Statements
$658,541
Total Revenue per Form 990
$591,429
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$357,398
Salaries, Compensation, and Employee Benefits$225,992
Grants and Similar Amounts Paid$70,561
Total Fundraising Expense$45,626
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$107,673$14,744$10,390$132,807
Fees for Services Other$68,203$4,776$4,775$77,754
Current Officers, Directors, Trustees, and Key Employees$55,273$7,574$5,324$68,171
Fees for Services Accounting$30,062$21,206$5,696$56,964
Grants to Domestic Orgs$50,000--$50,000
Occupancy$22,246$2,780$2,780$27,806
Grants to Domestic Individuals$20,561--$20,561
Payroll Taxes$15,827$2,169$1,524$19,520
Information Technology$13,934$1,742$1,742$17,418
Office Expenses$13,352$1,669$1,669$16,690
Travel$11,969--$11,969
Fees for Service Investment Mgmnt Fees-$11,633-$11,633
All Other Expenses$6,804$868$809$8,481
Depreciation Depletion$5,989$749$749$7,487
Other Employee Benefits$4,396$549$549$5,494
Insurance$4,132$516$516$5,164
Other Expenses$3,565$445$445$4,455
Total Functional Expenses$528,248$80,077$45,626$653,951

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$653,951
Total Expenses per Audited Statements$653,951
Total Expenses per Form 990$653,951
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Yale UniversityNew Haven, CT(c)(3)NAT'L REG. 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
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Ppp Loan Payable$45,951
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Page 6, Part VI, Line 2

“Tracie pretak bailey pretak 1st vp board member mother / daughter”

Form 990, Page 6, Part VI, Line 11B

“Once prepared the 990 is reviewed by the finance committee. The board of directors is then sent a copy to review, comment, and ask questions before the form 990 is submitted to the irs.”

Form 990, Page 6, Part VI, Line 12C

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

Form 990, Page 6, Part VI, Line 15A

“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, Page 6, Part VI, Line 15B

“A detailed analysis of market rates has been performed to establish compensation is commensurate with responsibilities and performance.”

Form 990, Page 6, Part VI, Line 17

“Mississippi, north carolina, new hampshire, new jersey, new mexico, new york, ohio, oklahoma, oregon, pennsylvania, rhode island, south carolina, tennessee, utah, virginia, washington, wisconsin, west virginia, north dakota”

Form 990, Page 6, Part VI, 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
EIN
94-2738019
Phone
2159779400
Address
PO BOX 1067, LANSDALE, PA 19446
Doing Business As
First

Signing Officer

Name
Christopher Boynton
Title
Chief Exec. Officer
Phone
2159779400
Signed
2022-09-21
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Christopher Boynton
Formed
1981
Legal Domicile
Pa
Voting Board Members
13
Independent Board Members
13
Employees
5
Volunteers
80

Preparer

Firm
Francis S Infurchia & Company LLC
Address
45 EAST AVENUE, NORWALK, CT 06851
Preparer
Francis S Infurchia CPA
Phone
2038527088
Supplemental Narrative

Additional Explanations

Form 990, Page 1, Item B

“Organization is amending its form 990 for fiscal year ended september 30, 2020 due to discrepancies identified between the subsequently audited financial statements and the original pre-audit filed form 990.”

Form 990

“The ichthyosis and related skin types are a set of rare skin diseases with numerous serious medical complications as well as psychosocial 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. Scholorship 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.”

Form 990, Part IX, Line 11G

“Consultant / interim director 59,644 3,706 3,705 professional fees - other 8,559 1,070 1,070 total 68,203 4,776 4,775”

Financial Statement Notes

Schedule D, Page 2, 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 affectred individuals whose financial and reimbursement circumstances make obtaining adequate care and treatment difficult or impossible.”

Schedule D, Page 3, Part X

“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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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 ACCROSS 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 CONTINUES TO BE REFERENCED IN NUMEROUS STUDIES AND MANUSCRIPTS. THE REGISTRY ALSO SERVES TO PROVIDE RESEARCH OPPORTUNITIES FOR TRAINING THE NEXT GENEATION OF PHYSICIAN SCIENTISTS.
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Document Assets

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Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,302,341
Liabilities
$118,025
Net assets
$2,184,316
Revenue
$591,429
Expenses
$653,951
Net income
-$62,522
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