Liabilities / Assets
35th percentile
Higher debt load relative to assets than 35% of similar nonprofits.
990 • Fiscal year 2022 • EIN 94-2738019
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
35th percentile
Higher debt load relative to assets than 35% of similar nonprofits.
Liabilities / Revenue
40th percentile
Higher debt load relative to revenue than 40% of similar nonprofits.
Net Margin
12th percentile
Higher net margin than 12% of similar nonprofits.
Top Officer Pay
87th percentile
Higher top officer pay than 87% of similar nonprofits.
Top officer pay equals 24.1% of source-year revenue.
Asset Growth
5th percentile
Faster asset growth than 5% of similar nonprofits.
Revenue Growth
13th percentile
Faster revenue growth than 13% of similar nonprofits.
Assets
Down$1,958,602
Down $657,114 (-25%) from 2021
Net Assets
Down$1,926,331
Down $659,328 (-25%) from 2021
Liabilities
Up$32,271
Up $2,214 (+7.4%) from 2021
Revenue
Down$708,551
Down $304,955 (-30%) from 2021
Expenses
Up$891,681
Up $265,433 (+42%) from 2021
Net Income
Down-$183,130
Down $570,388 (-147%) from 2021
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.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Investments in Publicly Traded Securities | $2,357,549 | $1,738,773 | ▼ $618,776 |
| Cash and Non-Interest-Bearing Accounts | $179,817 | $191,700 | ▲ $11,883 |
| Land, Buildings, and Equipment, Net | $32,767 | $24,505 | ▼ $8,262 |
| Prepaid Expenses and Deferred Charges | $1,831 | $3,624 | ▲ $1,793 |
| Total Assets | $2,615,716 | $1,958,602 | ▼ $657,114 |
| Other Assets Total | $43,752 | - | - |
| Liabilities | |||
| Accounts Payable and Accrued Expenses | $30,057 | $32,271 | ▲ $2,214 |
| Total Liabilities | $30,057 | $32,271 | ▲ $2,214 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $1,746,287 | $1,043,955 | ▼ $702,332 |
| Net Assets With Donor Restrictions | $839,372 | $882,376 | ▲ $43,004 |
| Total Net Assets Fund Balance | $2,585,659 | $1,926,331 | ▼ $659,328 |
| Total Liabilities and Net Assets / Fund Balance | $2,615,716 | $1,958,602 | ▼ $657,114 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Other Land Buildings | $22,399 | $50,045 | $72,444 |
| Equipment | $2,106 | $5,016 | $7,122 |
| Period | Beginning | Contrib. | Gain/Loss | Other Uses | End |
|---|---|---|---|---|---|
| 2021 | $160,037 | - | - | - | - |
| 2020 | $110,013 | - | - | - | - |
| 2019 | $110,013 | - | - | - | - |
| 2018 | $119,617 | - | - | - | - |
| 2017 | $119,617 | - | - | - | - |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Christopher Boynton | Chief Exec. | FT | $170,719 | $170,719 |
| Christopher Boynton | Chief Exec. Officer | - | $170,719 | $170,719 |
| Name | Title |
|---|---|
| Beth Hampshire | Board Chair |
| Brian Stern | Vice Chair |
| Brittany Craiglow Md | Board Member |
| Jackie Barrett | Board Member |
| Jolie Cina | Board Member |
| Keith Choate Md Phd | Board Member |
| Latanya Benjamin Md | Board Member |
| Lowell Wright | Board Member |
| Mark Evans | Board Member |
| Sarah Asch Md | Board Member |
| Sean Mcternan | Board Member |
| Tejal Kamdar | Board Member |
| Jason Thogmartin | CFO |
| Bailey Pretak | Secretary |
| Line Item | Amount |
|---|---|
| Other Expenses | $488,592 |
| Salaries, Compensation, and Employee Benefits | $333,753 |
| Total Fundraising Expense | $83,924 |
| Grants and Similar Amounts Paid | $69,336 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Current Officers, Directors, Trustees, and Key Employees | $131,454 | $22,193 | $17,072 | $170,719 |
| Other Salaries and Wages | $97,322 | $16,431 | $12,639 | $126,392 |
| Fees for Services Other | $36,788 | $11,586 | $9,558 | $57,932 |
| Fees for Services Accounting | $33,740 | $10,627 | $8,767 | $53,134 |
| Grants to Domestic Orgs | $50,000 | - | - | $50,000 |
| Office Expenses | $14,489 | $12,836 | $3,650 | $30,975 |
| Payroll Taxes | $16,750 | $2,828 | $2,175 | $21,753 |
| Grants to Domestic Individuals | $19,336 | - | - | $19,336 |
| All Other Expenses | $14,042 | $2,897 | $2,356 | $19,295 |
| Other Employee Benefits | $9,454 | $2,978 | $2,457 | $14,889 |
| Fees for Service Investment Mgmnt Fees | $1,250 | $10,000 | $1,250 | $12,500 |
| Information Technology | $7,026 | $2,213 | $1,826 | $11,065 |
| Other Expenses | $5,322 | $1,676 | $1,383 | $8,381 |
| Depreciation Depletion | $826 | $6,610 | $826 | $8,262 |
| Conferences and Meetings | $4,449 | $1,401 | $1,156 | $7,006 |
| Travel | $4,061 | $1,279 | $1,055 | $6,395 |
| Insurance | $2,966 | $934 | $771 | $4,671 |
| Occupancy | $802 | $253 | $208 | $1,263 |
| Total Functional Expenses | $695,120 | $112,637 | $83,924 | $891,681 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $891,681 |
| Total Expenses per Audited Statements | $891,681 |
| Total Expenses per Form 990 | $891,681 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Yale University | New Haven, CT | (c)(3) | Research Grant | $50,000 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
“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.”
“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.”
“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.”
“A detailed analysis of market rates has been performed to establish compensation is commensurate with responsibilities and performance.”
“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”
“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.”
“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.”
“Corpus of the endowment asset is held in perpetuity for the edna and myron curl endowment, the jane bukaty membership assistance fund, and the weary fund for first 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. Earnings on the weary fund for first will be used to purchase window air conditioners for families or individuals affected with ichthyosis or a related skin type who demonstrate financial need anywhere in the united states.”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
| Path | # | Value |
|---|---|---|
| IRS990/AccountantCompileOrReviewInd | 0 | false |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 30057 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 32271 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | TO IMPROVE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. |
| IRS990/AllOtherContributionsAmt | 0 | 618348 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 2356 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 2897 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 14042 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 19295 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | false |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | LISA BREUNING |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 2159779400 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | PO BOX 1067 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | LANSDALE |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | PA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 19446 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 179817 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 191700 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 17072 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 22193 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 131454 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 170719 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | true |
| IRS990/CompensationProcessOtherInd | 0 | true |
| IRS990/ConferencesMeetingsGrp/FundraisingAmt | 0 | 1156 |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 1401 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 4449 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 7006 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 619447 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 69336 |
| IRS990/CYInvestmentIncomeAmt | 0 | 89104 |
| IRS990/CYOtherExpensesAmt | 0 | 488592 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | -183130 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 333753 |
| IRS990/CYTotalExpensesAmt | 0 | 891681 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 83924 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 708551 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/DepreciationDepletionGrp/FundraisingAmt | 0 | 826 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 6610 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 826 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 8262 |
| IRS990/Desc | 0 | FIRST EDUCATES, INSPIRES, AND CONNECTS FAMILIES AND INDIVIDUALS AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. FIRST HOSTS PATIENT SUPPORT FORUMS AND ALSO PROVIDES CRITICAL INFORMATION TO ITS MEMBERS AND THE GENERAL PUBLIC THROUGH ITS WEBSITE AND CALLS TO ITS KNOWLEDGEABLE STAFF. FIRST MAINTAINS AN ACTIVE SOCIAL MEDIA PRESENCE AND FACILITATES GROUP DISCUSSIONS. FIRST PROVIDES ACCURATE, NON-BIASED INFORMATION ON THE LATEST IN RESEARCH, DIAGNOSIS, AND MANAGEMENT OF ICHTHYOSIS AND RELATED SKIN TYPES, AND CRITICAL SUPPORT TO THOSE AFFECTED WITH THESE GENETIC CONDITIONS AND THOSE THAT CARE FOR THEM. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DoingBusinessAsName/BusinessNameLine1Txt | 0 | FIRST |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 839372 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 882376 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | true |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 3 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 645120 |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FederatedCampaignsAmt | 0 | 1099 |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 8767 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 10627 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 33740 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 53134 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 9558 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 11586 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 36788 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 57932 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/FundraisingAmt | 0 | 1250 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt | 0 | 10000 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ProgramServicesAmt | 0 | 1250 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 12500 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 3.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 7 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 8 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 9 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 10 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 11 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 12 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 13 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | CHRISTOPHER BOYNTON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | JACKIE BARRETT |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | JOLIE CINA |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | MARK EVANS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | BETH HAMPSHIRE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | TEJAL KAMDAR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | SEAN MCTERNAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | BRITTANY CRAIGLOW MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | LATANYA BENJAMIN MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | SARAH ASCH MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | KEITH CHOATE MD PHD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | BAILEY PRETAK |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | BRIAN STERN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | JASON THOGMARTIN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | LOWELL WRIGHT |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 170719 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | CHIEF EXEC. |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | BOARD CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | CFO |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | BOARD MEMBER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 1981 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | true |
| IRS990/FundraisingActivitiesInd | 0 | false |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | -7984 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 14 |
| IRS990/GrantAmt | 0 | 19336 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 19336 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 19336 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 50000 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 50000 |
| IRS990/GrantsToIndividualsInd | 0 | true |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 1332272 |
| IRS990/GrossReceiptsAmt | 0 | 2048807 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IndependentAuditFinclStmtInd | 0 | false |
| IRS990/IndependentVotingMemberCnt | 0 | 14 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 1826 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 2213 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 7026 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 11065 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 771 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 934 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 2966 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 4671 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 97088 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 97088 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 2357549 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 1738773 |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 55061 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 32767 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 24505 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 79566 |
| IRS990/LegalDomicileStateCd | 0 | PA |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 1340256 |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | false |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | false |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | true |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | TO IMPROVE THE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | false |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 2585659 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 1926331 |
| IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt | 0 | -7984 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | -7984 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | -476198 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 1746287 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1043955 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 208 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 253 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 802 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 1263 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 3650 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 12836 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 14489 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 30975 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 43752 |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 2457 |
| IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt | 0 | 2978 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 9454 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 14889 |
| IRS990/OtherExpensesGrp/Desc | 0 | NATIONAL CONFERENCE & FOR |
| IRS990/OtherExpensesGrp/Desc | 1 | PRINTING & PUBLICATIONS |
| IRS990/OtherExpensesGrp/Desc | 2 | WEBSITE MANAGEMENT |
| IRS990/OtherExpensesGrp/Desc | 3 | POSTAGE & SHIPPING |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 11912 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 3363 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 1500 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 3 | 1383 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 4077 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 1818 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 1676 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 226329 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 12943 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 5771 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 5322 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 238241 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 20383 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 9089 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 8381 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 12639 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 16431 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 97322 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 126392 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | false |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 2175 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 2828 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 16750 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 21753 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 1831 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 3624 |
| IRS990/PrincipalOfficerNm | 0 | CHRISTOPHER BOYNTON |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | ONE OF THE CORNERSTONES OF FIRST IS ITS EMPHASIS ON RESEARCH AND 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 GENERATION OF PHYSICIAN SCIENTISTS. |
| IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt | 0 | 50000 |
| IRS990/ProgSrvcAccomActy2Grp/GrantAmt | 0 | 50000 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 602335 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 63556 |
| IRS990/PYInvestmentIncomeAmt | 0 | 315221 |
| IRS990/PYOtherExpensesAmt | 0 | 228566 |
| IRS990/PYOtherRevenueAmt | 0 | 95950 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 387258 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 334126 |
| IRS990/PYTotalExpensesAmt | 0 | 626248 |
| IRS990/PYTotalRevenueAmt | 0 | 1013506 |
| IRS990/QuidProQuoContributionsInd | 0 | false |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | false |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | -183130 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/ReportInvestmentsOtherSecInd | 0 | false |
| IRS990/ReportLandBuildingEquipmentInd | 0 | true |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | false |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | MISCELLANEOUS INCOME 96,118 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | PART II, LINE 10 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 619447 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 602335 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 675158 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 527211 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 595765 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 3019916 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 97088 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 71642 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 60113 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 68780 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 64651 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 362274 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 95950 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 168 |
| IRS990ScheduleA/OtherIncome170Grp/TotalAmt | 0 | 96118 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.86820 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.87740 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 3019916 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 619447 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 602335 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 675158 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 527211 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 595765 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 3019916 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 3478308 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990/ScheduleBRequiredInd | 0 | true |
| IRS990ScheduleD/CYEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 160037 |
| IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 110013 |
| IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 110013 |
| IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 119617 |
| IRS990ScheduleD/CYMinus4YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 119617 |
| IRS990ScheduleD/EndowmentsHeldRelatedOrgInd | 0 | true |
| IRS990ScheduleD/EndowmentsHeldUnrelatedOrgInd | 0 | true |
| IRS990ScheduleD/EquipmentGrp/BookValueAmt | 0 | 2106 |
| IRS990ScheduleD/EquipmentGrp/DepreciationAmt | 0 | 5016 |
| IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt | 0 | 7122 |
| IRS990ScheduleD/ExpensesSubtotalAmt | 0 | 891681 |
| IRS990ScheduleD/NetUnrealizedGainsInvstAmt | 0 | -475353 |
| IRS990ScheduleD/OtherLandBuildingsGrp/BookValueAmt | 0 | 22399 |
| IRS990ScheduleD/OtherLandBuildingsGrp/DepreciationAmt | 0 | 50045 |
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Displayed year
2022 • Form 990Detailed filing. Detailed filing data is available for this year.