Liabilities / Assets
32nd percentile
Higher debt load relative to assets than 32% of similar nonprofits.
990 • Fiscal year 2017 • EIN 94-2738019
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
32nd percentile
Higher debt load relative to assets than 32% of similar nonprofits.
Liabilities / Revenue
40th percentile
Higher debt load relative to revenue than 40% of similar nonprofits.
Net Margin
62nd percentile
Higher net margin than 62% of similar nonprofits.
Top Officer Pay
71st percentile
Higher top officer pay than 71% of similar nonprofits.
Top officer pay equals 15.5% of source-year revenue.
Asset Growth
52nd percentile
Faster asset growth than 52% of similar nonprofits.
Revenue Growth
31st percentile
Faster revenue growth than 31% of similar nonprofits.
Assets
Up$1,966,454
Up $70,832 (+3.7%) from 2016
Net Assets
Up$1,925,778
Up $175,061 (+10.0%) from 2016
Liabilities
Down$40,676
Down $104,229 (-72%) from 2016
Revenue
Down$683,721
Down $18,296 (-2.6%) from 2016
Expenses
Down$630,215
Down $346,449 (-35%) from 2016
Net Income
Up$53,506
Up $328,153 (+119%) from 2016
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 | $1,701,715 | $1,798,488 | ▲ $96,773 |
| Savings and Temporary Cash Investments | $130,134 | $139,185 | ▲ $9,051 |
| Land, Buildings, and Equipment, Net | $32,658 | $25,043 | ▼ $7,615 |
| Pledges and Grants Receivable | $25,000 | - | - |
| Prepaid Expenses and Deferred Charges | $3,115 | $738 | ▼ $2,377 |
| Total Assets | $1,895,622 | $1,966,454 | ▲ $70,832 |
| Other Assets Total | $3,000 | $3,000 | → $0 |
| Liabilities | |||
| Grants Payable | $100,000 | - | - |
| Accounts Payable and Accrued Expenses | $44,905 | $40,676 | ▼ $4,229 |
| Total Liabilities | $144,905 | $40,676 | ▼ $104,229 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $995,221 | $1,125,159 | ▲ $129,938 |
| Temporarily Rstr Net Assets | $645,483 | $690,606 | ▲ $45,123 |
| Permanently Rstr Net Assets | $110,013 | $110,013 | → $0 |
| Total Net Assets Fund Balance | $1,750,717 | $1,925,778 | ▲ $175,061 |
| Total Liabilities and Net Assets / Fund Balance | $1,895,622 | $1,966,454 | ▲ $70,832 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $25,043 | $33,537 | $58,580 |
| Period | Beginning | Contrib. | Gain/Loss | Other Uses | End |
|---|---|---|---|---|---|
| 2016 | $120,856 | - | ▲ $291 | $1,530 | $119,617 |
| 2015 | $122,756 | $300 | - | $2,200 | $120,856 |
| 2014 | $122,006 | $750 | - | - | $122,756 |
| 2013 | $124,365 | $550 | ▲ $491 | $3,400 | $122,006 |
| 2012 | $124,592 | $950 | ▲ $1,623 | $2,800 | $124,365 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Jean R Pickford | CEO, Former | FT | $105,727 | $105,727 |
| Moureen Wenik | Acting Executive Director | FT | $57,546 | $57,546 |
| Name | Title |
|---|---|
| Jeff Hoerle | President |
| Moise Levy Md | Vice President |
| Denise Eiser | Board Member |
| Eric Schweighoffer | Board Member |
| Gabriele Richard Md | Board Member |
| Keith Choate Md Phd | Board Member |
| Kimberly Cole | Board Member |
| Mark Evans | Board Member |
| Rachel See | Board Member |
| Robert Silverman | Board Member |
| Tracie Pretak | Board Member |
| William B Rizzo Md | Board Member |
| Larry Silverman | Chief Financial Officer |
| Denise Benedetto | Secretary |
| Line Item | Amount |
|---|---|
| Salaries, Compensation, and Employee Benefits | $362,931 |
| Other Expenses | $251,004 |
| Total Fundraising Expense | $128,077 |
| Grants and Similar Amounts Paid | $16,280 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Comp Disqual Persons | $168,388 | $12,072 | $70,310 | $250,770 |
| Current Officers, Directors, Trustees, and Key Employees | $57,033 | $12,221 | $12,221 | $81,475 |
| Office Expenses | $48,007 | $9,718 | $11,903 | $69,628 |
| Payroll Taxes | $20,971 | $2,199 | $7,516 | $30,686 |
| Occupancy | $22,179 | $1,725 | $739 | $24,643 |
| Information Technology | $16,915 | - | $523 | $17,438 |
| Fees for Service Investment Mgmnt Fees | - | $16,683 | - | $16,683 |
| Grants to Domestic Individuals | $16,280 | - | - | $16,280 |
| Conferences and Meetings | $12,917 | $52 | $381 | $13,350 |
| Fees for Services Accounting | - | $10,749 | - | $10,749 |
| Depreciation Depletion | $6,854 | $533 | $228 | $7,615 |
| All Other Expenses | $5,447 | - | $130 | $5,577 |
| Insurance | $1,137 | $4,293 | $38 | $5,468 |
| Other Expenses | $30,666 | $1,114 | $2,600 | $3,714 |
| Fees for Services Other | - | $2,118 | - | $2,118 |
| Total Functional Expenses | $428,282 | $73,856 | $128,077 | $630,215 |
| Line Item | Amount |
|---|---|
| Expenses per Audited Statements | $630,215 |
| Total Expenses per Audited Statements | $630,215 |
| Total Expenses per Form 990 | $630,215 |
| Expenses Not Reported on Financial Statements | $0 |
| Expenses Not Reported on Form 990 | $0 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
“Once prepared, the form 990 is reviewed by the finance committee. The updated form is electronically sent to our board of directors (bod) for their review.”
“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.”
“Local organizations, search firms, and employement agencies are polled to obtain a sense of appropriate compenstation. A more detailed anaylsis of market rates has been performed to establish compenstation is commensurate with responsiblities and performance.”
“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 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.”
“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.”
“The organization is required to recognize, measure, classify, and disclose in the financial statements uncertain tax positions taken or expected to be taken in the organization's tax returns. Management has determined that the organization does not have any uncertain tax positions and associated unrecognized benefits that materially impact the financial statements or related disclosures. Generally the organization is no longer subject to tax examinations by tax authorities for fiscal years prior to 2014.”
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 | 0 |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 44905 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 40676 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | TO IMPROVE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. |
| IRS990/AllOtherContributionsAmt | 0 | 586163 |
| IRS990/AllOtherExpensesGrp/FundraisingAmt | 0 | 130 |
| IRS990/AllOtherExpensesGrp/ProgramServicesAmt | 0 | 5447 |
| IRS990/AllOtherExpensesGrp/TotalAmt | 0 | 5577 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/AuditCommitteeInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | MOUREEN WENIK (ACTING EXECUTIVE DIRECTOR) |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 2159979400 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 2616 N BROAD ST |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | COLMAR |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | PA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 18915 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOfficerEntInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 12221 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 12221 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 57033 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 81475 |
| IRS990/CompDisqualPersonsGrp/FundraisingAmt | 0 | 70310 |
| IRS990/CompDisqualPersonsGrp/ManagementAndGeneralAmt | 0 | 12072 |
| IRS990/CompDisqualPersonsGrp/ProgramServicesAmt | 0 | 168388 |
| IRS990/CompDisqualPersonsGrp/TotalAmt | 0 | 250770 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 1 |
| IRS990/ConferencesMeetingsGrp/FundraisingAmt | 0 | 381 |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 52 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 12917 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 13350 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 595647 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 16280 |
| IRS990/CYInvestmentIncomeAmt | 0 | 70222 |
| IRS990/CYOtherExpensesAmt | 0 | 251004 |
| IRS990/CYOtherRevenueAmt | 0 | 8152 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 9700 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 53506 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 362931 |
| IRS990/CYTotalExpensesAmt | 0 | 630215 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 128077 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 683721 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 0 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/DepreciationDepletionGrp/FundraisingAmt | 0 | 228 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 533 |
| IRS990/DepreciationDepletionGrp/ProgramServicesAmt | 0 | 6854 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 7615 |
| IRS990/Desc | 0 | FIRST PROVIDES SUPPORT FOR FAMILIES AND INDIVIDUALS WHO ARE AFFECTED BY ICHTHYOSIS AND THE RELATED SKIN TYPES. IN 2017, FIRST CONNECTED OVER 450 INDIVIDUALS THROUGH FACE-TO-FACE MEETINGS, AND GREW ITS ONLINE SUPPORT GROUPS TO INCLUDE OVER 4,700 USERS IN OUR FACEBOOK GROUP AND FACEBOOK PAGES. FIRST CONTINUED TO PUBLISH ITS QUARTERLY NEWSLETTER, FIRST FOCUS, DELIVERED ITS MONTHLY E-NEWS TO THOUSANDS OF MEMBERS, AND MAINTAINED ITS WEBSITE AND SOCIAL MEDIA CHANNELS ON A DAILY BASIS. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DoingBusinessAsName/BusinessNameLine1Txt | 0 | FIRST |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 5 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 0 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 428282 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FederatedCampaignsAmt | 0 | 9484 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 10749 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 10749 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 2118 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 2118 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt | 0 | 16683 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 16683 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 3.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 3.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 3.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 3.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 1.00 |
| 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 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 40.00 |
| 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/OfficerInd | 5 | 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/PersonNm | 0 | JEFF HOERLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | MOISE LEVY MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | LARRY SILVERMAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | DENISE BENEDETTO |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | KEITH CHOATE MD PHD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | TRACIE PRETAK |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | GABRIELE RICHARD MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | WILLIAM B RIZZO MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | ERIC SCHWEIGHOFFER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | ROBERT SILVERMAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | RACHEL SEE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | KIMBERLY COLE |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | DENISE EISER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | MARK EVANS |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | JEAN R PICKFORD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | MOUREEN WENIK |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| 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 | 105727 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 15 | 57546 |
| 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/TitleTxt | 0 | PRESIDENT |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | VICE PRESIDENT |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | CHIEF FINANCIAL OFFICER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | BOARD MEMBER |
| 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 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | BOARD MEMBER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | CEO, FORMER |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | ACTING EXECUTIVE DIRECTOR |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/Form990TFiledInd | 0 | 1 |
| IRS990/FormationYr | 0 | 1981 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | 1 |
| IRS990/FundraisingActivitiesInd | 0 | 0 |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | 21026 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 13 |
| IRS990/GrantsPayableGrp/BOYAmt | 0 | 100000 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 16280 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 16280 |
| IRS990/GrantsToIndividualsInd | 0 | 1 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossAmountSalesAssetsGrp/SecuritiesAmt | 0 | 532425 |
| IRS990/GrossReceiptsAmt | 0 | 1195120 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 1 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 1 |
| IRS990/IndependentVotingMemberCnt | 0 | 13 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 523 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 16915 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 17438 |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 38 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 4293 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 1137 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 5468 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 49196 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 49196 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/InvestmentsPubTradedSecGrp/BOYAmt | 0 | 1701715 |
| IRS990/InvestmentsPubTradedSecGrp/EOYAmt | 0 | 1798488 |
| IRS990/IRPDocumentCnt | 0 | 1 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 33537 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 32658 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 25043 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 58580 |
| IRS990/LegalDomicileStateCd | 0 | CA |
| IRS990/LessCostOthBasisSalesExpnssGrp/SecuritiesAmt | 0 | 511399 |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 0 |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | TO IMPROVE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 1750717 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 1925778 |
| IRS990/NetGainOrLossInvestmentsGrp/ExclusionAmt | 0 | 21026 |
| IRS990/NetGainOrLossInvestmentsGrp/TotalRevenueColumnAmt | 0 | 21026 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 3300 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 121555 |
| IRS990/NoncashContributionsAmt | 0 | 11895 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 739 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 1725 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 22179 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 24643 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 11903 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 9718 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 48007 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 69628 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OtherAssetsTotalGrp/BOYAmt | 0 | 3000 |
| IRS990/OtherAssetsTotalGrp/EOYAmt | 0 | 3000 |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | UNRELATED BUSINESS INCO |
| IRS990/OtherExpensesGrp/Desc | 1 | GRASS ROOTS |
| IRS990/OtherExpensesGrp/Desc | 2 | REGIONAL SUPPORT NETWOR |
| IRS990/OtherExpensesGrp/Desc | 3 | LICENSES |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 21488 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 2600 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 379 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 1114 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 21488 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 30666 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 379 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 42976 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 30666 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 3714 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 541800 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 1 | 900099 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | ADVERTISING |
| IRS990/OtherRevenueMiscGrp/Desc | 1 | MISCELLANEOUS |
| IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt | 0 | 3052 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 5100 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 1 | 3052 |
| IRS990/OtherRevenueMiscGrp/UnrelatedBusinessRevenueAmt | 0 | 5100 |
| IRS990/OtherRevenueTotalAmt | 0 | 8152 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 7516 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 2199 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 20971 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 30686 |
| IRS990/PermanentlyRstrNetAssetsGrp/BOYAmt | 0 | 110013 |
| IRS990/PermanentlyRstrNetAssetsGrp/EOYAmt | 0 | 110013 |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 25000 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 3115 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 738 |
| IRS990/PrincipalOfficerNm | 0 | MOUREEN WENIK |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgramServiceRevenueGrp/BusinessCd | 0 | 900099 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | PATIENT SUPPORT FORUMS |
| IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 9700 |
| IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt | 0 | 9700 |
| IRS990/ProgSrvcAccomActy3Grp/GrantAmt | 0 | 16280 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 572534 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 182264 |
| IRS990/PYInvestmentIncomeAmt | 0 | 25965 |
| IRS990/PYOtherExpensesAmt | 0 | 330011 |
| IRS990/PYOtherRevenueAmt | 0 | 4882 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 98636 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | -274647 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 464389 |
| IRS990/PYTotalExpensesAmt | 0 | 976664 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 702017 |
| IRS990/QuidProQuoContributionsInd | 0 | 1 |
| IRS990/QuidProQuoContriDisclInd | 0 | 1 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 53506 |
| IRS990/RegularMonitoringEnfrcInd | 0 | 1 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 0 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 1 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 0 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/RevenueAmt | 0 | 9700 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 130134 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 139185 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 595647 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 572534 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 701102 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 798176 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 749381 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 3416840 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 49196 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 73102 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 55573 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 41510 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 35050 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 254431 |
| IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt | 0 | 208590 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearAmt | 0 | 3052 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 582 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 605 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 3851 |
| IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 2828 |
| IRS990ScheduleA/OtherIncome170Grp/TotalAmt | 0 | 10918 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.76240 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.76260 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 2822020 |
| IRS990ScheduleA/SubstantialContributorsTotAmt | 0 | 594820 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 595647 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 572534 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 701102 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 798176 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 749381 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 3416840 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 3701348 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt | 0 | 5100 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus1YearAmt | 0 | 4300 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 4125 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 4458 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 1176 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt | 0 | 19159 |
| 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 | 1 |
No mirrored PDF or thumbnail assets are attached yet.
Displayed year
2017 • Form 990Detailed filing. Detailed filing data is available for this year.
Similar nonprofits based on the same Siviq industry and scale cohort. 2017 filings • 501(c)3 • $1M-$5M nonprofits
Bronx, NY
View Organization501(c)3
Revenue vs current organization
5.1% higherAssets vs current organization
About the sameHazard, KY
View Organization501(c)3
Revenue vs current organization
69% lowerAssets vs current organization
About the sameSchaumburg, IL
View Organization501(c)3
Revenue vs current organization
187% higherAssets vs current organization
75% lowerMiami, FL
View Organization501(c)3
Revenue vs current organization
100% lowerAssets vs current organization
About the same