Liabilities / Assets
35th percentile
Higher debt load relative to assets than 35% of similar nonprofits.
EIN 94-2738019 • 501(c)3 • Lansdale, PA
Profile
To improve the lives and seek cures for those affected by ichthyosis and related skin types.
Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.
Liabilities / Assets
35th percentile
Higher debt load relative to assets than 35% of similar nonprofits.
Liabilities / Revenue
36th percentile
Higher debt load relative to revenue than 36% of similar nonprofits.
Net Margin
85th percentile
Higher net margin than 85% of similar nonprofits.
Top Officer Pay
90th percentile
Higher top officer pay than 90% of similar nonprofits.
Top officer pay equals 10.6% of source-year revenue.
Asset Growth
91st percentile
Faster asset growth than 91% of similar nonprofits.
Revenue Growth
94th percentile
Faster revenue growth than 94% of similar nonprofits.
Assets
Up$3,282,013
Up $1,207,840 (+58%) from 2023
Liabilities
Up$46,944
Up $27,430 (+141%) from 2023
Net Assets
Up$3,235,069
Up $1,180,410 (+57%) from 2023
Revenue
Up$1,970,863
Up $1,235,917 (+168%) from 2023
Expenses
Up$1,182,513
Up $426,422 (+56%) from 2023
Net Income
Up$788,350
Up $809,495 (+3828%) from 2023
Most recent year
2024 • Form 990Detailed filing. Detailed filing data is available for this year.
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 | $1,885,282 | $2,318,818 | ▲ $433,536 |
| Cash and Non-Interest-Bearing Accounts | $157,406 | $947,758 | ▲ $790,352 |
| Land, Buildings, and Equipment, Net | $16,242 | $11,873 | ▼ $4,369 |
| Prepaid Expenses and Deferred Charges | $15,243 | $3,564 | ▼ $11,679 |
| Total Assets | $2,074,173 | $3,282,013 | ▲ $1,207,840 |
| Liabilities | |||
| Accounts Payable and Accrued Expenses | $19,514 | $46,944 | ▲ $27,430 |
| Total Liabilities | $19,514 | $46,944 | ▲ $27,430 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $1,172,894 | $1,974,506 | ▲ $801,612 |
| Net Assets With Donor Restrictions | $881,765 | $1,260,563 | ▲ $378,798 |
| Total Net Assets Fund Balance | $2,054,659 | $3,235,069 | ▲ $1,180,410 |
| Total Liabilities and Net Assets / Fund Balance | $2,074,173 | $3,282,013 | ▲ $1,207,840 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $11,873 | $71,938 | $83,811 |
| Period | Beginning | Contrib. | Gain/Loss | Other Uses | End |
|---|---|---|---|---|---|
| 2023 | $267,463 | - | - | - | - |
| 2022 | $237,850 | - | - | - | - |
| 2021 | $160,037 | - | - | - | - |
| 2020 | $110,013 | - | - | - | - |
| 2019 | $110,013 | - | - | - | - |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Christopher Boynton | Chief Exec. | FT | $208,365 | $208,365 |
| Christopher Boynton | Chief Exec. Officer | - | $208,365 | $208,365 |
| Name | Title |
|---|---|
| Beth Hampshire | Board Chair |
| Sean Mcternan | Chair |
| Brittany Craiglow Md | Board Member |
| Fulvia Veronese | Board Member |
| Jackie Barrett | Board Member |
| Jeffrey Blake | Board Member |
| Jennie Wiklow-riley | Board Member |
| Jolie Cina | Board Member |
| Keith Choate Md Phd | Board Member |
| Latanya Benjamin Md | Board Member |
| Lowell Wright | Board Member |
| Sarah Asch Md | Board Member |
| Sarah Aughenbaugh | Board Member |
| Jason Thogmartin | CFO |
| Bailey Pretak | Secretary |
| Tejal Kamdar | Secretary |
| Mark Evans | Vice Preside |
| Line Item | Amount |
|---|---|
| Other Expenses | $580,741 |
| Salaries, Compensation, and Employee Benefits | $393,268 |
| Grants and Similar Amounts Paid | $208,504 |
| Total Fundraising Expense | $100,912 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Current Officers, Directors, Trustees, and Key Employees | $156,274 | $20,837 | $31,254 | $208,365 |
| Other Salaries and Wages | $114,175 | $26,640 | $11,417 | $152,232 |
| Grants to Domestic Orgs | $107,434 | - | - | $107,434 |
| Grants to Domestic Individuals | $101,070 | - | - | $101,070 |
| All Other Expenses | $74,494 | $13,179 | $9,654 | $97,327 |
| Fees for Services Other | $46,264 | $8,232 | $5,588 | $60,084 |
| Fees for Services Accounting | $36,847 | $6,556 | $4,450 | $47,853 |
| Other Expenses | $25,924 | $4,613 | $3,131 | $33,668 |
| Office Expenses | $17,495 | $3,114 | $2,114 | $22,723 |
| Payroll Taxes | $16,378 | $2,839 | $2,621 | $21,838 |
| Travel | $10,911 | $1,941 | $1,318 | $14,170 |
| Fees for Service Investment Mgmnt Fees | $8,715 | $1,551 | $1,053 | $11,319 |
| Other Employee Benefits | $8,342 | $1,484 | $1,007 | $10,833 |
| Depreciation Depletion | $6,633 | $1,180 | $801 | $8,614 |
| Information Technology | $6,352 | $1,130 | $767 | $8,249 |
| Insurance | $3,809 | $678 | $460 | $4,947 |
| Conferences and Meetings | $2,461 | $438 | $297 | $3,196 |
| Occupancy | $1,475 | $262 | $178 | $1,915 |
| Total Functional Expenses | $950,392 | $131,209 | $100,912 | $1,182,513 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $1,182,513 |
| Total Expenses per Audited Statements | $1,182,513 |
| Total Expenses per Form 990 | $1,182,513 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Uw Medicine | Seattle, WA | (c)(3) | Research Grant | $55,000 |
| 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 | 19514 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 46944 |
| 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 | 1914968 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 9654 |
| IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt | 0 | 13179 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 74494 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 97327 |
| 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 | 157406 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 947758 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 31254 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 20837 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 156274 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 208365 |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | true |
| IRS990/CompensationProcessOtherInd | 0 | true |
| IRS990/ConferencesMeetingsGrp/FundraisingAmt | 0 | 297 |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 438 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 2461 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 3196 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 1914968 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 208504 |
| IRS990/CYInvestmentIncomeAmt | 0 | 55895 |
| IRS990/CYOtherExpensesAmt | 0 | 580741 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 788350 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 393268 |
| IRS990/CYTotalExpensesAmt | 0 | 1182513 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 100912 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 1970863 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/DepreciationDepletionGrp/FundraisingAmt | 0 | 801 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 1180 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 6633 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 8614 |
| 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 | 881765 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1260563 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | true |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 3 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 811703 |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 4450 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 6556 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 36847 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 47853 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 5588 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 8232 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 46264 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 60084 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/FundraisingAmt | 0 | 1053 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt | 0 | 1551 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ProgramServicesAmt | 0 | 8715 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 11319 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignOfficeInd | 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 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 3.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 2.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 16 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 17 | 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/IndividualTrusteeOrDirectorInd | 14 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 15 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 16 | 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/OfficerInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 6 | 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/OtherCompensationAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 17 | 0 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | CHRISTOPHER BOYNTON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | SARAH AUGHENBAUGH |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | JACKIE BARRETT |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | JEFFREY BLAKE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | JOLIE CINA |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | MARK EVANS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | BETH HAMPSHIRE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | TEJAL KAMDAR |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | SEAN MCTERNAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | BRITTANY CRAIGLOW MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | LATANYA BENJAMIN MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | SARAH ASCH MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | KEITH CHOATE MD PHD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | BAILEY PRETAK |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | JASON THOGMARTIN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | FULVIA VERONESE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 16 | JENNIE WIKLOW-RILEY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 17 | LOWELL WRIGHT |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 208365 |
| 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/ReportableCompFromOrgAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 17 | 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/ReportableCompFromRltdOrgAmt | 15 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 16 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 17 | 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 MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | VICE PRESIDE |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | BOARD CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | CFO |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 16 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 17 | BOARD MEMBER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 1981 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedInd | 0 | true |
| IRS990/FundraisingActivitiesInd | 0 | false |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 17 |
| IRS990/GrantAmt | 0 | 101070 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 101070 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 101070 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 107434 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 107434 |
| IRS990/GrantsToIndividualsInd | 0 | true |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 1970863 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IndependentAuditFinclStmtInd | 0 | false |
| IRS990/IndependentVotingMemberCnt | 0 | 17 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 767 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 1130 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 6352 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 8249 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 460 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 678 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 3809 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 4947 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 55895 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 55895 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 1885282 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 2318818 |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 71938 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 16242 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 11873 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 83811 |
| IRS990/LegalDomicileStateCd | 0 | PA |
| 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 | 2054659 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 3235069 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 392060 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 1172894 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1974506 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 178 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 262 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 1475 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 1915 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 2114 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 3114 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 17495 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 22723 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt | 0 | 1007 |
| IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt | 0 | 1484 |
| IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt | 0 | 8342 |
| IRS990/OtherEmployeeBenefitsGrp/TotalAmt | 0 | 10833 |
| IRS990/OtherExpensesGrp/Desc | 0 | NAT. CONF - BANQUET |
| IRS990/OtherExpensesGrp/Desc | 1 | PASS THROUGH EXPENSES |
| IRS990/OtherExpensesGrp/Desc | 2 | NAT. CONF - LODGING |
| IRS990/OtherExpensesGrp/Desc | 3 | NAT. CONF - ENTERTAINMENT |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 14248 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 6204 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 4350 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 3 | 3131 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 20988 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 9139 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 6408 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 3 | 4613 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 117964 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 51362 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 36013 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 25924 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 153200 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 66705 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 46771 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 33668 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 11417 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 26640 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 114175 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 152232 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 2621 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 2839 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 16378 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 21838 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 15243 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 3564 |
| 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 | 138689 |
| IRS990/ProgSrvcAccomActy2Grp/GrantAmt | 0 | 107434 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 676431 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 108721 |
| IRS990/PYInvestmentIncomeAmt | 0 | 58515 |
| IRS990/PYOtherExpensesAmt | 0 | 297552 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | -21145 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 349818 |
| IRS990/PYTotalExpensesAmt | 0 | 756091 |
| IRS990/PYTotalRevenueAmt | 0 | 734946 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 788350 |
| 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 95,950 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | PART II, LINE 10 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 1914968 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 676431 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 619447 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 602335 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 675158 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 4488339 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 55895 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 71603 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 97088 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 71642 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 60113 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 356341 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 95950 |
| IRS990ScheduleA/OtherIncome170Grp/TotalAmt | 0 | 95950 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.90850 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.86950 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 4488339 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 1914968 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 676431 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 619447 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 602335 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 675158 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 4488339 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 4940630 |
| 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 | 267463 |
| IRS990ScheduleD/CYMinus1YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 237850 |
| IRS990ScheduleD/CYMinus2YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 160037 |
| IRS990ScheduleD/CYMinus3YrEndwmtFundGrp/BeginningYearBalanceAmt | 0 | 110013 |
No mirrored PDF or thumbnail assets are attached yet.