Liabilities / Assets
27th percentile
Tied with the lowest-debt nonprofits in its peer group.
990 • Fiscal year 2018 • EIN 20-2944028
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
27th percentile
Tied with the lowest-debt nonprofits in its peer group.
Liabilities / Revenue
27th percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
81st percentile
Higher net margin than 81% of similar nonprofits.
Top Officer Pay
90th percentile
Higher top officer pay than 90% of similar nonprofits.
Top officer pay equals 21.5% of source-year revenue.
Asset Growth
93rd percentile
Faster asset growth than 93% of similar nonprofits.
Revenue Growth
88th percentile
Faster revenue growth than 88% of similar nonprofits.
Assets
Up$258,930
Up $125,921 (+95%) from 2017
Net Assets
Up$258,930
Up $125,921 (+95%) from 2017
Liabilities
Flat$0
Flat from 2017
Revenue
Up$508,472
Up $187,992 (+59%) from 2017
Expenses
Down$384,145
Down $36,076 (-8.6%) from 2017
Net Income
Up$124,327
Up $224,068 (+225%) from 2017
To ensure that all individuals with fabry disease are identified, diagnosed and provided an opportunity for treatment in time to avoid a diminished quality-of-life and life-threatening consequences; to provide education and awareness to people with fabry disease and their families, to physicians, and to the public; to provide support and assistance to people with fabry disease and their families; and to conduct and promote research to improve management and treatment for fabry disease.
To ensure that all individuals with fabry disease are identified, diagnosed and treated in time to avoid a diminished quality of life and life threatening consequences; to provide education and awareness; and to promote research to improve treatment for fabry disease.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $133,009 | $257,808 | ▲ $124,799 |
| Land, Buildings, and Equipment, Net | $0 | $700 | ▲ $700 |
| Intangible Assets | - | $422 | - |
| Total Assets | $133,009 | $258,930 | ▲ $125,921 |
| Liabilities | |||
| Total Liabilities | $0 | $0 | → $0 |
| Net Assets / Fund Balance | |||
| Unrestricted Net Assets | $133,009 | $258,930 | ▲ $125,921 |
| Total Net Assets Fund Balance | $133,009 | $258,930 | ▲ $125,921 |
| Total Liabilities and Net Assets / Fund Balance | $133,009 | $258,930 | ▲ $125,921 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Equipment | $700 | $5,199 | $5,899 |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Gerald Walter | Chair | FT | $109,200 | $109,200 |
| Name | Title |
|---|---|
| Derek Halberg | Vice Chair |
| Douglas Warnock | Director |
| Elizabeth Gaffin | Director |
| Steven Rothman | Director |
| Tracey Krasnow | Director |
| Tracy Myatt | Secretary |
| Melanie Wilson | Treasurer |
| Line Item | Amount |
|---|---|
| Other Expenses | $139,665 |
| Salaries, Compensation, and Employee Benefits | $131,948 |
| Grants and Similar Amounts Paid | $112,532 |
| Total Fundraising Expense | $7,007 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Grants to Domestic Individuals | $112,532 | - | - | $112,532 |
| Current Officers, Directors, Trustees, and Key Employees | $103,740 | $3,276 | $2,184 | $109,200 |
| Conferences and Meetings | $81,101 | $1,659 | - | $82,760 |
| Fees for Services Other | $22,465 | $240 | - | $22,705 |
| Office Expenses | $2,842 | $9,568 | $3,948 | $16,358 |
| Travel | $14,172 | $1,546 | - | $15,718 |
| Other Salaries and Wages | $12,700 | $401 | $267 | $13,368 |
| Payroll Taxes | $8,911 | $281 | $188 | $9,380 |
| Depreciation Depletion | - | $471 | - | $471 |
| Other Expenses | - | $66 | $420 | $66 |
| Total Functional Expenses | $358,463 | $18,675 | $7,007 | $384,145 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
“The organization does not have any committees.”
“Prior to filing, form 990 will be reviewed by the chairman and treasurer and then distributed to the full board for review.”
“The conflict of interest policy is reviewed and signed by each board member annually.”
“The salary level and benefits package of the chairman was independently reviewed and documented by the board of directors, to ensure it does not exceed comparable levels of compensation for non-profit directors with similar experience at comparable organizations.”
“The three most recent form 990s, the bylaws, articles of incorporation, exempt status information, and conflict of interest policy are provided to the public upon request.”
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/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND TREATED IN TIME TO AVOID A DIMINISHED QUALITY OF LIFE AND LIFE THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS; AND TO PROMOTE RESEARCH TO IMPROVE TREATMENT FOR FABRY DISEASE. |
| IRS990/AllOtherContributionsAmt | 0 | 508472 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | GERALD WALTER |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 8006519131 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | PO BOX 1325 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | CARRBORO |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | NC |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 27510 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOfficerEntInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 133009 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 257808 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 2184 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 3276 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 103740 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 109200 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 0 |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 1659 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 81101 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 82760 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 508472 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 112532 |
| IRS990/CYInvestmentIncomeAmt | 0 | 0 |
| IRS990/CYOtherExpensesAmt | 0 | 139665 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 124327 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 131948 |
| IRS990/CYTotalExpensesAmt | 0 | 384145 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 7007 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 508472 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 0 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/DepreciationDepletionGrp/ManagementAndGeneralAmt | 0 | 471 |
| IRS990/DepreciationDepletionGrp/TotalAmt | 0 | 471 |
| IRS990/Desc | 0 | EDUCATION AND AWARENESS: EARLY INTERVENTION IMPROVES MANY ADVERSE QUALITY-OF-LIFE SYMPTOMS AND EXTENDS PATIENTS' LIFE EXPECTANCY. OUR FAMILY AND PHYSICIAN EDUCATION PROGRAMS HELP TO ENSURE CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST AGE POSSIBLE TO RECEIVE APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH UNDIAGNOSED INDIVIDUALS BY RAISING AWARENESS OF THE SYMPTOMS OF FABRY DISEASE. WE PROVIDED EDUCATION AND AWARENESS ABOUT FABRY DISEASE IN VARIOUS FORMS SUCH AS OUR ROBUST EDUCATIONAL WEBSITE AT WWW.FABRYDISEASE.ORG; OUR ANNUAL FAMILY EDUCATION CONFERENCE; VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION, HAND-OUT AND CALENDAR, A FABRY COMMUNITY LANDSCAPE DOCUMENT, FREQUENT (OFTEN DAILY) EDUCATIONAL POSTS ON OUR FACE BOOK PAGE OF OVER 2,000 FOLLOWERS, PERIODIC TWEETS ON OUR TWITTER PAGE, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE ARE IN CONTACT WITH OVER 1,200 ADULTS WITH FABRY DISEASE BY EMAIL. OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM YIELDED 200 TO 400 HUNDRED PARTICIPANTS PER SURVEY. WE FACILITATED OBTAINING ABOUT 40 OF 50 STATE GOVERNOR'S PROCLAMATIONS FOR APRIL FABRY DISEASE AWARENESS MONTH; EVIDENCE INDICATES THAT 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 2 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 126815 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 240 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 22465 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 22705 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | 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/PersonNm | 0 | DOUGLAS WARNOCK |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | STEVEN ROTHMAN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | ELIZABETH GAFFIN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | TRACEY KRASNOW |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | GERALD WALTER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | DEREK HALBERG |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | TRACY MYATT |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | MELANIE WILSON |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 109200 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 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/TitleTxt | 0 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | VICE CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | TREASURER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 1 |
| IRS990/FormationYr | 0 | 2005 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedInd | 0 | 0 |
| IRS990/FundraisingActivitiesInd | 0 | 0 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 8 |
| IRS990/GrantAmt | 0 | 210 |
| IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt | 0 | 112532 |
| IRS990/GrantsToDomesticIndividualsGrp/TotalAmt | 0 | 112532 |
| IRS990/GrantsToIndividualsInd | 0 | 1 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossReceiptsAmt | 0 | 508472 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 0 |
| IRS990/IndependentVotingMemberCnt | 0 | 7 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 1 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartIIIInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/IntangibleAssetsGrp/EOYAmt | 0 | 422 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LandBldgEquipAccumDeprecAmt | 0 | 5199 |
| IRS990/LandBldgEquipBasisNetGrp/BOYAmt | 0 | 0 |
| IRS990/LandBldgEquipBasisNetGrp/EOYAmt | 0 | 700 |
| IRS990/LandBldgEquipCostOrOtherBssAmt | 0 | 5899 |
| IRS990/LegalDomicileStateCd | 0 | VA |
| 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 | 0 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND PROVIDED AN OPPORTUNITY FOR TREATMENT IN TIME TO AVOID A DIMINISHED QUALITY-OF-LIFE AND LIFE-THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES, TO PHYSICIANS, AND TO THE PUBLIC; TO PROVIDE SUPPORT AND ASSISTANCE TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES; AND TO CONDUCT AND PROMOTE RESEARCH TO IMPROVE MANAGEMENT AND TREATMENT FOR FABRY DISEASE. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 133009 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 258930 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 3948 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 9568 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 2842 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 16358 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsSFAS117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | PAYROLL SERVICE FEE |
| IRS990/OtherExpensesGrp/Desc | 1 | BANK FEES |
| IRS990/OtherExpensesGrp/Desc | 2 | OTHER EXPENSES |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 420 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 1167 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 66 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 1167 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 420 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 66 |
| IRS990/OtherSalariesAndWagesGrp/FundraisingAmt | 0 | 267 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 401 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 12700 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 13368 |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/FundraisingAmt | 0 | 188 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 281 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 8911 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 9380 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrincipalOfficerNm | 0 | GERALD WALTER |
| IRS990/PriorPeriodAdjustmentsAmt | 0 | 1594 |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | COMMUNITY SUPPORT: PROVIDE SUPPORT AND ASSISTANCE TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. OUR COMMUNITY SUPPORT PROGRAM IS DIRECTED TO PEOPLE LIVING WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED DAILY PHONE CALLS, EMAIL AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS AND FAMILIES WITH FABRY DISEASE. WE PROVIDED PATIENTS AND FAMILIES A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS, PURCHASED MANY JOURNAL ARTICLES TO SHARE WITH THE COMMUNITY, PROVIDED TRANSPORTATION AND OTHER ASSISTANCE TO ATTEND FABRY EDUCATIONAL MEETINGS, PROVIDED FINANCIAL ASSISTANCE FOR ONE-TIME OR SHORT TERM NEEDS NOT COVERED BY OTHER PROGRAMS, AND PROVIDED MY-HEALTH-HANDBOOK-KITS FOR EMERGENCY SITUATIONS. WE FACILITATED TESTING FOR DIAGNOSES AND ACCESS TO TREATMENT. WE PROVIDED A FIND-A-FABRY-SPECIALIST SEARCHABLE DATABASE ON OUR WEBSITE. WE CONDUCTED AN ANNUAL CAMP FOR CHILDREN AND FAMILIES TO CONNECT AND SHARE EXPERIENCES. WE PROVIDED ASSISTANCE TO BRING 32 FAMILIES TO CAMP FROM ACROSS THE COUNTRY. BECAUSE THE DISEASE IS RARE, MANY PATIENTS AND THEIR FAMILIES DO NOT KNOW ANYONE ELSE LIVING WITH FABRY DISEASE. THE MUTUAL SUPPORT CONNECTIONS MADE THROUGH OUR CAMP PROGRAM ARE INVALUABLE WITHIN THE COMMUNITY. |
| IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt | 0 | 231648 |
| IRS990/ProgSrvcAccomActy2Grp/GrantAmt | 0 | 112322 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 320480 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 111670 |
| IRS990/PYInvestmentIncomeAmt | 0 | 0 |
| IRS990/PYOtherExpensesAmt | 0 | 178251 |
| IRS990/PYOtherRevenueAmt | 0 | 0 |
| IRS990/PYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | -99741 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 130300 |
| IRS990/PYTotalExpensesAmt | 0 | 420221 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/PYTotalRevenueAmt | 0 | 320480 |
| IRS990/QuidProQuoContributionsInd | 0 | 0 |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 124327 |
| 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 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 508472 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 320480 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 470127 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 396935 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 414862 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 2110876 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.17190 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.44290 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 362760 |
| IRS990ScheduleA/SubstantialContributorsTotAmt | 0 | 1748116 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsPY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 508472 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 320480 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 470127 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 396935 |
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| IRS990ScheduleI/GrantsOtherAsstToIndivInUSGrp/NonCashAssistanceDesc | 0 | PROVIDED GRANTS TO INDIVIDUALS FOR TRAVEL, LODGING AND MEAL ASSISTANCE TO PARTICIPATE IN EDUCATIONAL MEETINGS, MEDICAL VISITS AND OUR ANNUAL CONFERENCE AND CAMP AS WELL AS PROVIDED GRANTS TO INDIVIDUALS FOR URGENT AND UNMET MEDICAL AND LIVING EXPENSE NEEDS. |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | THE ORGANIZATION DOES NOT HAVE ANY COMMITTEES. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | PRIOR TO FILING, FORM 990 WILL BE REVIEWED BY THE CHAIRMAN AND TREASURER AND THEN DISTRIBUTED TO THE FULL BOARD FOR REVIEW. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | THE CONFLICT OF INTEREST POLICY IS REVIEWED AND SIGNED BY EACH BOARD MEMBER ANNUALLY. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | THE SALARY LEVEL AND BENEFITS PACKAGE OF THE CHAIRMAN WAS INDEPENDENTLY REVIEWED AND DOCUMENTED BY THE BOARD OF DIRECTORS, TO ENSURE IT DOES NOT EXCEED COMPARABLE LEVELS OF COMPENSATION FOR NON-PROFIT DIRECTORS WITH SIMILAR EXPERIENCE AT COMPARABLE ORGANIZATIONS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | THE THREE MOST RECENT FORM 990S, THE BYLAWS, ARTICLES OF INCORPORATION, EXEMPT STATUS INFORMATION, AND CONFLICT OF INTEREST POLICY ARE PROVIDED TO THE PUBLIC UPON REQUEST. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | FORM 990, PART VI, SECTION A, LINE 8B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | FORM 990, PART VI, SECTION B, LINE 11B |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | FORM 990, PART VI, SECTION B, LINE 12C |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | FORM 990, PART VI, SECTION B, LINE 15A |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | FORM 990, PART VI, SECTION C, LINE 19 |
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| ReasonableCauseExplanation/ExplanationTxt | 0 | REASONABLE CAUSE STATEMENT FOR LATE FILING 2017 FORM 990:SECTION 6651(A)(1) INDICATES THE LATE FILING PENALTY WILL NOT BE IMPOSED IF THE ORGANIZATION CAN SHOW REASONABLE CAUSE FOR FAILURE TO FILE A COMPLETE OR TIMELY RETURN. IN LATE 2018 THE CHAIR WHO ACTS AS THE EXECUTIVE DIRECTOR OF THE ORGANIZATION HAD A SERIOUS HEALTH SITUATION REQUIRING LENGTHY HOSPITALIZATION AND MANY WEEKS OF DAILY REHABILITATION LEAVING THE CHAIR TOO ILL TO COMPILE THE DATA NECESSARY TO MEET THE APRIL 15, 2019 EXTENDED FILING DEADLINE. WE ALSO ASK THAT YOU CONSIDER THE CHAIR IS THE ONLY FULL-TIME EMPLOYEE OF THE ORGANIZATION. THE OTHER EMPLOYEE, WHO WORKS LESS THAN 10 HOURS PER WEEK, DID NOT HAVE ACCESS TO ALL OF THE DATA NECESSARY TO COMPLETE THE TAX RETURN.GOING FORWARD THE ORGANIZATION HAS THE ORGANIZATION HAS ENGAGED AN OUTSIDE ACCOUNTING FIRM TO TRACK DUE DATES AND ASSIST THE ORGANIZATION WITH MEETING IT'S FILING OBLIGATIONS. |
| ReturnHeader/BuildTS | 0 | 2019-02-21 02:37:17Z |
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| ReturnHeader/BusinessOfficerGrp/PersonNm | 0 | GERALD WALTER |
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| ReturnHeader/PreparerFirmGrp/PreparerUSAddress/AddressLine1Txt | 0 | 1414 RALEIGH RD SUITE 300 |
| ReturnHeader/PreparerFirmGrp/PreparerUSAddress/CityNm | 0 | CHAPEL HILL |
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| ReturnHeader/PreparerPersonGrp/PhoneNum | 0 | 9199428700 |
| ReturnHeader/PreparerPersonGrp/PreparerPersonNm | 0 | ROBIN MCDUFFIE |
| ReturnHeader/ReturnTs | 0 | 2019-09-19T08:16:06-05:00 |
| ReturnHeader/ReturnTypeCd | 0 | 990 |
| ReturnHeader/TaxPeriodBeginDt | 0 | 2017-06-01 |
| ReturnHeader/TaxPeriodEndDt | 0 | 2018-05-31 |
| ReturnHeader/TaxYr | 0 | 2017 |
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Displayed year
2018 • Form 990Detailed filing. Detailed filing data is available for this year.