NATIONAL FABRY DISEASE FOUNDATION: Form 990, tax year 2013
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL FABRY DISEASE FOUNDATION (EIN 20-2944028)
- Tax period
- 2013-06-01 to 2014-05-31
- Filed
- 2015-03-31
- IRS object ID
- 201530909349300793
- Schema version
- 2013v4.0
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2015-03-31T18:18:52-07:00 | ReturnTs |
| Tax Period End | 2014-05-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MIG MURPHY SISTROM CPA PC | BusinessNameLine1 |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2216 Whitley Dr | AddressLine1 |
| City | DURHAM | City |
| State | NC | State |
| ZIP Code | 277071469 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2013-06-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 202944028 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | National Fabry Disease Foundation Inc | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 8006519131 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 4301 Connecticut Ave NW Suite 404 | AddressLine1 |
| City | Washington | City |
| State | DC | State |
| ZIP Code | 20008 | ZIPCode |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Gerald Walter | PersonNm |
| Person Title | Chairman | PersonTitleTxt |
| Signature | 2015-03-31 | SignatureDt |
| Discuss With Paid Preparer | Yes (true) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | Darren Hunicutt | PreparerPersonNm |
| PTIN | P01294583 | PTIN |
| Phone | 9194191119 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2013 | TaxYr |
| Build TS | 2016-02-25 16:41:14Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | Gerald Walter | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 4301 Connecticut Ave NW 404 | AddressLine1 |
| City | Washington | City |
| State | DC | State |
| ZIP Code | 20008 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $414,863 | GrossReceiptsAmt |
| Group Return For Affiliates | false | GroupReturnForAffiliatesInd |
| All Affiliates Included | false | AllAffiliatesIncludedInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | http://www.fabrydisease.org/ | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 2005 | FormationYr |
| Legal Domicile State | VA | LegalDomicileStateCd |
| Activity Or Mission | 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 awarenesss; and to promote research to improve treatment for Fabry Disease. | ActivityOrMissionDesc |
| Voting Members Governing Body | 5 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 4 | VotingMembersIndependentCnt |
| Total Employee | 2 | TotalEmployeeCnt |
| Total Volunteers | 30 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| PY Contributions Grants | $311,637 | PYContributionsGrantsAmt |
| CY Contributions Grants | $414,863 | CYContributionsGrantsAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| CY Investment Income | $0 | CYInvestmentIncomeAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $311,637 | PYTotalRevenueAmt |
| CY Total Revenue | $414,863 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $81,652 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $83,962 | CYGrantsAndSimilarPaidAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $112,202 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $117,947 | CYSalariesCompEmpBnftPaidAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $3,163 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $121,789 | PYOtherExpensesAmt |
| CY Other Expenses | $105,922 | CYOtherExpensesAmt |
| PY Total Expenses | $315,643 | PYTotalExpensesAmt |
| CY Total Expenses | $307,831 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$4,006 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $107,032 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $35,114 | TotalAssetsBOYAmt |
| Total Assets EOY | $142,146 | TotalAssetsEOYAmt |
| Total Liabilities EOY | $0 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $35,114 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $142,146 | NetAssetsOrFundBalancesEOYAmt |
| Mission | 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 assistance to individuals with the disease and their families; to provide education and awarenesss; and to promote research to improve treatment. | MissionDesc |
| Significant New Program Srvc | false | SignificantNewProgramSrvcInd |
| Significant Change | false | SignificantChangeInd |
| Expense | $155,926 | ExpenseAmt |
| Grant | $24,603 | GrantAmt |
| Desc | Education and Awareness - Provide education and promote awareness about Fabry Disease. Recent evidence indicates that 10-20 times as many people have Fabry Disease as are currently diagnosed and undergoing treatment. Early intervention has proven to extend patients' life expectancy. Our public education program is designed to reach these undiagnosed individuals by raising awareness of the symptoms of Fabry Disease. We provide various programs to educate physicians to increase recognition and diagnosis. In conjunction with the annual camp, we produce a conference to educate patients on management of Fabry disease and on strategies for living with the disease; current developments in research; advances in treatment, etc. We have over 1,600 followers on our Facebook page and reach many thousands more to include a post that was recently viewed by over 27,000 people in a week. Our comprehensive, educational social media program consists of Facebook, Twitter, a blog, and our Inspire community discussion page. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $136,510 | ExpenseAmt |
| Grant | $59,359 | GrantAmt |
| Desc | 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 provide daily phone, email and written correspondence to support individuals and families with Fabry disease. We provide patients and families a free 24/7 hotline for counseling; purchase journal articles to share with the community; and provide transportation and other resources to facilitate understanding and management of Fabry Disease and access to treatment. We conduct an annual camp for children and families to connect and share experiences. We provided assistance to bring 33 families from across the country. Because the disease is rare, many patients and their families do not know anyone else living with Fabry disease, and the connections made through our camp program are invaluable within the community. We provide financial assistance for one-time or short term needs not covered by other programs. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $292,436 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (true) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (true) | ScheduleBRequiredInd |
| Political Campaign Acty | false | PoliticalCampaignActyInd |
| Lobbying Activities | false | LobbyingActivitiesInd |
| Subject To Proxy Tax | false | SubjectToProxyTaxInd |
| Donor Advised Fund | false | DonorAdvisedFundInd |
| Conservation Easements | false | ConservationEasementsInd |
| Collections Of Art | false | CollectionsOfArtInd |
| Credit Counseling | false | CreditCounselingInd |
| Temp Or Permanent Endowments | false | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (true) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | false | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | false | ReportProgramRelatedInvstInd |
| Report Other Assets | false | ReportOtherAssetsInd |
| Report Other Liabilities | false | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | false | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | false | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | false | ConsolidatedAuditFinclStmtInd |
| School Operating | false | SchoolOperatingInd |
| Foreign Office | false | ForeignOfficeInd |
| Foreign Activities | false | ForeignActivitiesInd |
| More Than5000 K To Org | false | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividualsInd |
| Professional Fundraising | false | ProfessionalFundraisingInd |
| Fundraising Activities | false | FundraisingActivitiesInd |
| Gaming Activities | false | GamingActivitiesInd |
| Operate Hospital | false | OperateHospitalInd |
| Grants To Organizations | false | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (true) | GrantsToIndividualsInd |
| Schedule J Required | false | ScheduleJRequiredInd |
| Tax Exempt Bonds | false | TaxExemptBondsInd |
| Invest Tax Exempt Bonds | false | InvestTaxExemptBondsInd |
| Escrow Account | false | EscrowAccountInd |
| On Behalf Of Issuer | false | OnBehalfOfIssuerInd |
| Engaged In Excess Benefit Trans | false | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | false | PYExcessBenefitTransInd |
| Loan Outstanding | false | LoanOutstandingInd |
| Grant To Related Person | false | GrantToRelatedPersonInd |
| Business Rln With Org Mem | false | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | false | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | false | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | false | DeductibleNonCashContriInd |
| Deductible Art Contribution | false | DeductibleArtContributionInd |
| Terminate Operations | false | TerminateOperationsInd |
| Partial Liquidation | false | PartialLiquidationInd |
| Disregarded Entity | false | DisregardedEntityInd |
| Related Entity | false | RelatedEntityInd |
| Related Organization Ctrl Ent | false | RelatedOrganizationCtrlEntInd |
| Transaction With Control Ent | false | TransactionWithControlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | false | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | false | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (true) | ScheduleORequiredInd |
| IRP Document | 0 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | false | BackupWthldComplianceInd |
| Employee | 2 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (true) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | false | UnrelatedBusIncmOverLimitInd |
| Form990 T Filed | false | Form990TFiledInd |
| Foreign Financial Account | false | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | false | TaxablePartyNotificationInd |
| Nondeductible Contributions | false | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | false | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOfInd |
| Form8282 Filed | 0 | Form8282FiledCnt |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | false | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | false | PayPremiumsPrsnlBnftCntrctInd |
| Form8899 Filedind | false | Form8899Filedind |
| Form1098 C Filed | false | Form1098CFiledInd |
| Excess Business Holdings | false | ExcessBusinessHoldingsInd |
| Taxable Distributions | false | TaxableDistributionsInd |
| Distribution To Donor | false | DistributionToDonorInd |
| Org Filed In Lieu Of Form1041 | false | OrgFiledInLieuOfForm1041Ind |
| Licensed More Than One State | false | LicensedMoreThanOneStateInd |
| Indoor Tanning Services | false | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 5 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 4 | IndependentVotingMemberCnt |
| Family Or Business Rln | false | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | false | DelegationOfMgmtDutiesInd |
| Change To Org Documents | false | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | false | MembersOrStockholdersInd |
| Election Of Board Members | false | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | false | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (true) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (true) | MinutesOfCommitteesInd |
| Officer Mailing Address | false | OfficerMailingAddressInd |
| Local Chapters | false | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (true) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (true) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (true) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (true) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (true) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (true) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (true) | CompensationProcessCEOInd |
| Compensation Process Other | false | CompensationProcessOtherInd |
| Investment In Joint Venture | false | InvestmentInJointVentureInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | Gerald Walter | PersonNm |
| Phone | 8006519131 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO Box 366 | AddressLine1 |
| City | Carrboro | City |
| State | NC | State |
| ZIP Code | 27510 | ZIPCode |
Form990 Part VII Section A Form990PartVIISectionAGrp (5 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|---|
| Gerald Walter | |||||||
| Chairman | 40.00 | 0.00 | Yes (X) | Yes (X) | $104,000 | $0 | $0 |
| Derek Halberg | |||||||
| ViceChair/Treas | 0.50 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Elizabeth Gaffin | |||||||
| Secretary | 0.50 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 |
| Tracey Krasnow | |||||||
| Director | 0.50 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Douglas Warnock | |||||||
| Director | 0.50 | 0.00 | Yes (X) | $0 | $0 | $0 | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $104,000 | TotalReportableCompFromOrgAmt |
| Indiv Rcvd Greater Than100 K | 1 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | false | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | false | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | false | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $414,863 | AllOtherContributionsAmt |
| Total Contributions | $414,863 | TotalContributionsAmt |
| Total Program Service Revenue | $0 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Royalties Revenue RoyaltiesRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Rental Income Or Loss NetRentalIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Income From Gaming NetIncomeFromGamingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
Net Income Or Loss NetIncomeOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $0 | TotalRevenueColumnAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $0 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $414,863 | TotalRevenueColumnAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $83,962 | TotalAmt |
| Program Services | $83,962 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Benefits To Members BenefitsToMembersGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $104,000 | TotalAmt |
| Program Services | $96,720 | ProgramServicesAmt |
| Management And General | $5,200 | ManagementAndGeneralAmt |
| Fundraising | $2,080 | FundraisingAmt |
Comp Disqual Persons CompDisqualPersonsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,200 | TotalAmt |
| Program Services | $5,200 | ProgramServicesAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $8,747 | TotalAmt |
| Program Services | $8,163 | ProgramServicesAmt |
| Management And General | $417 | ManagementAndGeneralAmt |
| Fundraising | $167 | FundraisingAmt |
Fees For Services Management FeesForServicesManagementGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,946 | TotalAmt |
| Management And General | $1,946 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,108 | TotalAmt |
| Program Services | $11,108 | ProgramServicesAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $98 | TotalAmt |
| Program Services | $98 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $8,219 | TotalAmt |
| Program Services | $8,027 | ProgramServicesAmt |
| Management And General | $108 | ManagementAndGeneralAmt |
| Fundraising | $84 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,203 | TotalAmt |
| Program Services | $6,412 | ProgramServicesAmt |
| Management And General | $15 | ManagementAndGeneralAmt |
| Fundraising | $776 | FundraisingAmt |
Royalties RoyaltiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $24,247 | TotalAmt |
| Program Services | $21,692 | ProgramServicesAmt |
| Management And General | $2,555 | ManagementAndGeneralAmt |
Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $46,452 | TotalAmt |
| Program Services | $46,295 | ProgramServicesAmt |
| Management And General | $157 | ManagementAndGeneralAmt |
Interest InterestGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Payments To Affiliates PaymentsToAffiliatesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,505 | TotalAmt |
| Program Services | $3,313 | ProgramServicesAmt |
| Management And General | $137 | ManagementAndGeneralAmt |
| Fundraising | $55 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Management And GeneralManagementAndGeneralAmt | Program ServicesProgramServicesAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| Payroll Processing Fees | $1,206 | $1,206 | ||
| Survey Incentives | $1,063 | $1,063 | ||
| Publications | $385 | $1 | $383 | $1 |
| Dues & Subscriptions | $300 | $300 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $190 | TotalAmt |
| Management And General | $190 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $307,831 | TotalAmt |
| Program Services | $292,436 | ProgramServicesAmt |
| Management And General | $12,232 | ManagementAndGeneralAmt |
| Fundraising | $3,163 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $28,438 | BOYAmt |
| EOY | $138,974 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Receivables From Officers Etc ReceivablesFromOfficersEtcGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Inventories For Sale Or Use InventoriesForSaleOrUseGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $2,487 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $2,242 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $367 | BOYAmt |
| EOY | $245 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,309 | BOYAmt |
| EOY | $2,927 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $0 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $35,114 | BOYAmt |
| EOY | $142,146 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $0 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $35,114 | BOYAmt |
| EOY | $62,146 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $80,000 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $35,114 | BOYAmt |
| EOY | $142,146 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $35,114 | BOYAmt |
| EOY | $142,146 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $107,032 | ReconcilationRevenueExpnssAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Other | Yes (X) | MethodOfAccountingOtherInd |
| Accountant Compile Or Review | false | AccountantCompileOrReviewInd |
| FS Audited | false | FSAuditedInd |
| Federal Grant Audit Required | false | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $164,579 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $151,732 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $245,993 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $311,636 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $414,862 | CurrentTaxYearAmt |
| Total | $1,288,802 | TotalAmt |
Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $164,579 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $151,732 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $245,993 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $311,636 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $414,862 | CurrentTaxYearAmt |
| Total | $1,288,802 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,104,511 | SubstantialContributorsTotAmt |
| Public Support Total170 | $184,291 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $0 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $1,288,802 | TotalSupportAmt |
| Public Support CY170 | 0.14300 | PublicSupportCY170Pct |
| Public Support PY170 | 0.13520 | PublicSupportPY170Pct |
| Ten Pct Facts Crcmstncs Test CY | Yes (X) | TenPctFactsCrcmstncsTestCYInd |
| Facts And Circumstances Test | Part II, Line 17b--Financial supporters for the organization are limited to individuals and organizations who are aware of Fabry Disease, so the very nature of Fabry as a rare disease limits our base of support. However, there are several indicators that the organizations support can be broadened:-The Executive Director does not have a background in raising money, so grants and contributions until now have come without benefit of skilled fundraising efforts. The E.D. is currently receiving training on individual fundraising and grant writing, and intends to seek more training in these areas. The Executive Director completed the Duke University certificate program for nonprofit management in 2014.-With the growth in newsletter sign-ups to over 1,000 subscribers and the growth of our Facebook likes to over 1,600 people we are reaching many more public donor prospects with our fundraising campaigns which should yield more individual contributions. -The E.D. has implemented a web-based fundraising campaign using Network for Good and First Giving. -While growth is slow, we have started to receive monthly recurring donations and matching gift donations in addition to our one-time contributions. -Individuals are raising funds for the organization through various initiatives such as a walk across the U.S. by a person with Fabry disease.-Three of the four largest contributors over the last five years have been pharmaceutical companies who are manufacturing or testing treatments for Fabry disease and a couple of family foundations with an interest in Fabry disease. While this will likely continue to be a significant source of support, the E.D. continues to identify potential sources of smaller contributions, and will seek grants from those sources.In addition to plans and expectations to broaden the base of support, other facts & circumstances support the organizations continued status as a public charity:-The board of directors is comprised of individuals representative of the community: a government attorney, a nonprofit director, a government employee, a psychiatrist, and the organizations own Executive Director. Other than the E.D., none of the board members have any professional connection to Fabry Disease. Of the five members, only two have Fabry. -The organizations programs have purely charitable purposes serving a community that benefits greatly from the outreach, educational, and community support work. See program service accomplishments at Form 990, Part III, Line 4. | FactsAndCircumstancesTestTxt |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule D IRS990ScheduleD
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $2,487 | OtherCostOrOtherBasisAmt |
| Depreciation | $2,242 | DepreciationAmt |
| Book Value | $245 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $245 | TotalBookValueLandBuildingsAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (true) | GrantRecordsMaintainedInd |
| Total501c3 Org | 0 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Type | Travel expenses to attend camp | GrantTypeTxt |
| Recipient | 142 | RecipientCnt |
| Cash Grant | $83,962 | CashGrantAmt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | Grantmaker's Description of How Grants are Used | FormAndLineReferenceDesc |
| Explanation | The foundation awards grants of travel expenses to individuals with Fabry Disease and their families, in order for them to attend the camp and conference that are held each year. The expenses of the grant funds are in most instances paid by the foundation directly to an airline in exchange for plane tickets for the camp and conference attendees. In some instances additional payments are made to the attendees to reimburse them for ancillary travel expenses. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| Form 990, Part VI, Line 11b: Form 990 Review Process | Prior to filing, the Form 990 will be reviewed by the Chairman and Treasurer, and then distributed to the full Board for review. |
| Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts | The conflict of interest policy is reviewed and signed by each Board member annually. |
| Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management | 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 similiar experience at comparable organizations. |
| Form 990, Part VI, Line 19: Other Organization Documents Publicly Available | The three most recent Form 990s (including financial information), the Bylaws, Articles of Incorporation, Form 1023 Application for Exemption, and Conflict of Interest Policy are provided to the public upon request. |
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