NATIONAL FABRY DISEASE FOUNDATION: Form 990, tax year 2012
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL FABRY DISEASE FOUNDATION (EIN 20-2944028)
- Tax period
- 2012-06-01 to 2013-05-31
- Filed
- 2014-04-11
- IRS object ID
- 201411019349300316
- Schema version
- 2012v2.0
- 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) |
|---|---|---|
| Timestamp | 2014-04-11T09:00:52-07:00 | Timestamp |
| Tax Period End Date | 2013-05-31 | TaxPeriodEndDate |
Preparer Firm PreparerFirm
Preparer Firm Business Name PreparerFirmBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MIG MURPHY SISTROM CPA PC | BusinessNameLine1 |
Preparer Firm US Address PreparerFirmUSAddress
| 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 | ReturnType |
| Tax Period Begin Date | 2012-06-01 | TaxPeriodBeginDate |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 202944028 | EIN |
Name Name
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | National Fabry Disease Foundation Inc | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Control | NATI | NameControl |
| Phone | 8006519131 | Phone |
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 |
Officer Officer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | Gerald Walter | Name |
| Title | Chairman | Title |
| Date Signed | 2014-04-11 | DateSigned |
| Authorize Third Party | true | AuthorizeThirdParty |
Preparer Preparer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | Darren Hunicutt | Name |
| PTIN | P01294583 | PTIN |
| Phone | 9194191119 | Phone |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax Year | 2012 | TaxYear |
| Build TS | 2015-11-30 17:44:51Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | 311637 | GrossReceipts |
| Group Return For Affiliates | false | GroupReturnForAffiliates |
| All Affiliates Included | false | AllAffiliatesIncluded |
| Organization501c3 | X | Organization501c3 |
| Web Site | http://www.fabrydisease.org/ | WebSite |
| Type Of Organization Corporation | X | TypeOfOrganizationCorporation |
| Year Formation | 2005 | YearFormation |
| State Legal Domicile | VA | StateLegalDomicile |
| Activity Or Mission Description | 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. | ActivityOrMissionDescription |
| Nbr Voting Members Governing Body | 5 | NbrVotingMembersGoverningBody |
| Nbr Independent Voting Members | 4 | NbrIndependentVotingMembers |
| Total Nbr Employees | 1 | TotalNbrEmployees |
| Total Nbr Volunteers | 35 | TotalNbrVolunteers |
| Total Gross UBI | 0 | TotalGrossUBI |
| Contributions Grants Prior Year | 245993 | ContributionsGrantsPriorYear |
| Contributions Grants Current Year | 311637 | ContributionsGrantsCurrentYear |
| Program Service Revenue CY | 0 | ProgramServiceRevenueCY |
| Investment Income Prior Year | -393 | InvestmentIncomePriorYear |
| Investment Income Current Year | 0 | InvestmentIncomeCurrentYear |
| Other Revenue Current Year | 0 | OtherRevenueCurrentYear |
| Total Revenue Prior Year | 245600 | TotalRevenuePriorYear |
| Total Revenue Current Year | 311637 | TotalRevenueCurrentYear |
| Grants And Similar Amnts Prior Year | 61350 | GrantsAndSimilarAmntsPriorYear |
| Grants And Similar Amnts CY | 81652 | GrantsAndSimilarAmntsCY |
| Benefits Paid To Members CY | 0 | BenefitsPaidToMembersCY |
| Salaries Etc Prior Year | 110719 | SalariesEtcPriorYear |
| Salaries Etc Current Year | 112202 | SalariesEtcCurrentYear |
| Total Prof Fundrsng Exp CY | 0 | TotalProfFundrsngExpCY |
| Total Fundrsng Exp Current Year | 4227 | TotalFundrsngExpCurrentYear |
| Other Expense Prior Year | 74608 | OtherExpensePriorYear |
| Other Expenses Current Year | 121789 | OtherExpensesCurrentYear |
| Total Expenses Prior Year | 246677 | TotalExpensesPriorYear |
| Total Expenses Current Year | 315643 | TotalExpensesCurrentYear |
| Revenues Less Expenses Prior Year | -1077 | RevenuesLessExpensesPriorYear |
| Revenues Less Expenses CY | -4006 | RevenuesLessExpensesCY |
| Total Assets BOY | 39120 | TotalAssetsBOY |
| Total Assets EOY | 35114 | TotalAssetsEOY |
| Total Liabilities EOY | 0 | TotalLiabilitiesEOY |
| Net Assets Or Fund Balances BOY | 39120 | NetAssetsOrFundBalancesBOY |
| Net Assets Or Fund Balances EOY | 35114 | NetAssetsOrFundBalancesEOY |
| Mission Description | 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. | MissionDescription |
| Significant New Program Services | false | SignificantNewProgramServices |
| Significant Change | false | SignificantChange |
| Expense | 179168 | Expense |
| Grants | 27217 | Grants |
| Description | 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 1,000 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. | Description |
Activity2 Activity2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 119421 | Expense |
| Grants | 54435 | Grants |
| Description | 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 35 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. | Description |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expense | 298589 | TotalProgramServiceExpense |
| Described In501 C3 | true | DescribedIn501C3 |
| Schedule B Required | true | ScheduleBRequired |
| Political Activities | false | PoliticalActivities |
| Lobbying Activities | false | LobbyingActivities |
| Subject To Proxy Tax | false | SubjectToProxyTax |
| Donor Advised Funds | false | DonorAdvisedFunds |
| Conservation Easements | false | ConservationEasements |
| Collections Of Art | false | CollectionsOfArt |
| Credit Counseling | false | CreditCounseling |
| Term Or Permanent Endowments | false | TermOrPermanentEndowments |
| Report Land Bldg Equip | true | ReportLandBldgEquip |
| Report Invest Oth Securities | false | ReportInvestOthSecurities |
| Report Prog Rel Invest | false | ReportProgRelInvest |
| Report Other Assets | false | ReportOtherAssets |
| Report Other Liabilities | false | ReportOtherLiabilities |
| Report Fin48 Footnote | false | ReportFin48Footnote |
| Independent Audit Financial Stmt | false | IndependentAuditFinancialStmt |
| Consolidated Audit Financial Stmt | false | ConsolidatedAuditFinancialStmt |
| School | false | School |
| Foreign Office | false | ForeignOffice |
| Foreign Activities | false | ForeignActivities |
| More Than5000 K To Organizations | false | MoreThan5000KToOrganizations |
| More Than5000 K To Individuals | false | MoreThan5000KToIndividuals |
| Professional Fundraising | false | ProfessionalFundraising |
| Fundraising Activities | false | FundraisingActivities |
| Gaming | false | Gaming |
| Hospital | false | Hospital |
| Grants To Organizations | false | GrantsToOrganizations |
| Grants To Individuals | true | GrantsToIndividuals |
| Schedule J Required | false | ScheduleJRequired |
| Tax Exempt Bonds | false | TaxExemptBonds |
| Invest Tax Exempt Bonds | false | InvestTaxExemptBonds |
| Escrow Account | false | EscrowAccount |
| On Behalf Of Issuer | false | OnBehalfOfIssuer |
| Excess Benefit Transaction | false | ExcessBenefitTransaction |
| Prior Excess Benefit Transaction | false | PriorExcessBenefitTransaction |
| Loan To Officer Or DQP | false | LoanToOfficerOrDQP |
| Grant To Related Person | false | GrantToRelatedPerson |
| Bsnss Rltnshp With Organization | false | BsnssRltnshpWithOrganization |
| Bsnss Rltnshp Thru Family Member | false | BsnssRltnshpThruFamilyMember |
| Officer Entity With Bsnss Rltnshp | false | OfficerEntityWithBsnssRltnshp |
| Deductible Non Cash Contributions | false | DeductibleNonCashContributions |
| Deductible Contributions Of Art | false | DeductibleContributionsOfArt |
| Terminated | false | Terminated |
| Partial Liquidation | false | PartialLiquidation |
| Disregarded Entity | false | DisregardedEntity |
| Related Entity | false | RelatedEntity |
| Related Org Controlled Entity | false | RelatedOrgControlledEntity |
| Transaction Related Entity | false | TransactionRelatedEntity |
| Transfers To Exempt Non Chrtbl Org | false | TransfersToExemptNonChrtblOrg |
| Activities Conducted Partnership | false | ActivitiesConductedPartnership |
| Schedule O Required | true | ScheduleORequired |
| Number Forms Transmitted With1096 | 0 | NumberFormsTransmittedWith1096 |
| Number W2 G Included | 0 | NumberW2GIncluded |
| Compliance With Backup Witholding | false | ComplianceWithBackupWitholding |
| Number Of Employees | 1 | NumberOfEmployees |
| Employment Tax Returns Filed | true | EmploymentTaxReturnsFiled |
| Unrelated Business Income | false | UnrelatedBusinessIncome |
| Form990-T Filed | false | Form990-TFiled |
| Foreign Financial Account | false | ForeignFinancialAccount |
| Prohibited Tax Shelter Trans | false | ProhibitedTaxShelterTrans |
| Taxable Party Notification | false | TaxablePartyNotification |
| Non Deductible Contributions | false | NonDeductibleContributions |
| Quid Pro Quo Contributions | false | QuidProQuoContributions |
| Form8282 Property Disposed Of | false | Form8282PropertyDisposedOf |
| Number Of8282 Filed | 0 | NumberOf8282Filed |
| Funds To Pay Premiums | false | FundsToPayPremiums |
| Premiums Paid | false | PremiumsPaid |
| Form8899 Filed | false | Form8899Filed |
| Form1098 C Filed | false | Form1098CFiled |
| Excess Business Holdings | false | ExcessBusinessHoldings |
| Taxable Distributions | false | TaxableDistributions |
| Distribution To Donor | false | DistributionToDonor |
| Filed Lieu1041 | false | FiledLieu1041 |
| Licensed More Than One State | false | LicensedMoreThanOneState |
| Indoor Tanning Services | false | IndoorTanningServices |
| Info In Schedule O Part VI | X | InfoInScheduleOPartVI |
| Nbr Voting Governing Body Members | 5 | NbrVotingGoverningBodyMembers |
| Number Independent Voting Members | 4 | NumberIndependentVotingMembers |
| Family Or Business Relationship | false | FamilyOrBusinessRelationship |
| Delegation Of Management Duties | false | DelegationOfManagementDuties |
| Changes To Organizing Docs | false | ChangesToOrganizingDocs |
| Material Diversion Or Misuse | false | MaterialDiversionOrMisuse |
| Members Or Stockholders | false | MembersOrStockholders |
| Election Of Board Members | false | ElectionOfBoardMembers |
| Decisions Subject To Approval | false | DecisionsSubjectToApproval |
| Minutes Of Governing Body | true | MinutesOfGoverningBody |
| Minutes Of Committees | true | MinutesOfCommittees |
| Officer Mailing Address | false | OfficerMailingAddress |
| Local Chapters | false | LocalChapters |
| Form990 Provided To Governing Body | true | Form990ProvidedToGoverningBody |
| Conflict Of Interest Policy | true | ConflictOfInterestPolicy |
| Annual Disclosure Covered Persons | true | AnnualDisclosureCoveredPersons |
| Regular Monitoring Enforcement | true | RegularMonitoringEnforcement |
| Whistleblower Policy | true | WhistleblowerPolicy |
| Document Retention Policy | true | DocumentRetentionPolicy |
| Compensation Process CEO | true | CompensationProcessCEO |
| Compensation Process Other | false | CompensationProcessOther |
| Investment In Joint Venture | false | InvestmentInJointVenture |
| Upon Request | X | UponRequest |
The Books Are In Care Of TheBooksAreInCareOf
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Person | Gerald Walter | NamePerson |
| Telephone Number | 8006519131 | TelephoneNumber |
Address US AddressUS
| 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 Form990PartVIISectionA (6 entries)
| TitleTitle | Average Hours Per WeekAverageHoursPerWeek | Average Hours Per Week RelatedAverageHoursPerWeekRelated | Individual Trustee Or DirectorIndividualTrusteeOrDirector | Reportable Comp From OrganizationReportableCompFromOrganization | Reportable Comp From Related OrgsReportableCompFromRelatedOrgs | Other CompensationOtherCompensation | OfficerOfficer |
|---|---|---|---|---|---|---|---|
| Douglas Warnock | |||||||
| Director | 0.50 | 0.00 | X | 0 | 0 | 0 | |
| Tracey Krasnow | |||||||
| Director | 0.50 | 0.00 | X | 0 | 0 | 0 | |
| Elizabeth Gaffin | |||||||
| Secretary | 0.50 | 0.00 | X | 0 | 0 | 0 | X |
| Sue Brown | |||||||
| Treasurer | 0.50 | 0.00 | X | 0 | 0 | 0 | X |
| Derek Halberg | |||||||
| Vice-Chair | 0.50 | 0.00 | X | 0 | 0 | 0 | X |
| Gerald Walter | |||||||
| Chairman | 40.00 | 0.00 | X | 104000 | 0 | 0 | X |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | 104000 | TotalReportableCompFromOrg |
| Number Individuals GT100 K | 1 | NumberIndividualsGT100K |
| Formers Listed | false | FormersListed |
| Total Comp GT150 K | false | TotalCompGT150K |
| Compensation From Other Sources | false | CompensationFromOtherSources |
| Number Of Contractors GT100 K | 0 | NumberOfContractorsGT100K |
| All Other Contributions | 311637 | AllOtherContributions |
| Total Contributions | 311637 | TotalContributions |
| Total Program Service Revenue | 0 | TotalProgramServiceRevenue |
Investment Income InvestmentIncome
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Income From Invest Bond Proceeds IncomeFromInvestBondProceeds
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Royalties Revenue RoyaltiesRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Net Rental Income Or Loss NetRentalIncomeOrLoss
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Net Gain Or Loss Investments NetGainOrLossInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Net Income From Fundraising Events NetIncomeFromFundraisingEvents
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Net Income From Gaming NetIncomeFromGaming
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
Net Income Or Loss NetIncomeOrLoss
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 0 | TotalRevenueColumn |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Revenue | 0 | TotalOtherRevenue |
Total Revenue TotalRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 311637 | TotalRevenueColumn |
Grants To Domestic Orgs GrantsToDomesticOrgs
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Grants To Domestic Individuals GrantsToDomesticIndividuals
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 81652 | Total |
| Program Services | 81652 | ProgramServices |
Foreign Grants ForeignGrants
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Benefits To Members BenefitsToMembers
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Comp Current Officers Directors CompCurrentOfficersDirectors
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 104000 | Total |
| Program Services | 96720 | ProgramServices |
| Management And General | 5200 | ManagementAndGeneral |
| Fundraising | 2080 | Fundraising |
Comp Disqual Persons CompDisqualPersons
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Other Salaries And Wages OtherSalariesAndWages
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Pension Plan Contributions PensionPlanContributions
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Other Employee Benefits OtherEmployeeBenefits
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Payroll Taxes PayrollTaxes
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 8202 | Total |
| Program Services | 7628 | ProgramServices |
| Management And General | 410 | ManagementAndGeneral |
| Fundraising | 164 | Fundraising |
Fees For Services Management FeesForServicesManagement
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Fees For Services Legal FeesForServicesLegal
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Fees For Services Accounting FeesForServicesAccounting
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 4626 | Total |
| Management And General | 4626 | ManagementAndGeneral |
Fees For Services Lobbying FeesForServicesLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Fees For Services Prof Fundraising FeesForServicesProfFundraising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Fees For Services Invst Mgmnt Fees FeesForServicesInvstMgmntFees
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Fees For Services Other FeesForServicesOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 10547 | Total |
| Program Services | 10547 | ProgramServices |
Advertising Advertising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 10 | Total |
| Management And General | 10 | ManagementAndGeneral |
Office Expenses OfficeExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 4393 | Total |
| Program Services | 4180 | ProgramServices |
| Management And General | 152 | ManagementAndGeneral |
| Fundraising | 61 | Fundraising |
Information Technology InformationTechnology
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 13825 | Total |
| Program Services | 12047 | ProgramServices |
| Management And General | 229 | ManagementAndGeneral |
| Fundraising | 1549 | Fundraising |
Royalties Royalties
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Occupancy Occupancy
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Travel Travel
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 19955 | Total |
| Program Services | 19955 | ProgramServices |
Travel Entrtnmnt Public Officials TravelEntrtnmntPublicOfficials
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Conferences Meetings ConferencesMeetings
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 62363 | Total |
| Program Services | 62245 | ProgramServices |
| Management And General | 118 | ManagementAndGeneral |
Interest Interest
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Payments To Affiliates PaymentsToAffiliates
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Depreciation Depletion DepreciationDepletion
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 3634 | Total |
| Program Services | 3379 | ProgramServices |
| Management And General | 182 | ManagementAndGeneral |
| Fundraising | 73 | Fundraising |
Insurance Insurance
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Other Expenses OtherExpenses (4 entries)
| DescriptionDescription | TotalTotal | Program ServicesProgramServices | FundraisingFundraising | Management And GeneralManagementAndGeneral |
|---|---|---|---|---|
| Publications | 203 | 203 | ||
| Dues & Subscriptions | 300 | 300 | ||
| Staff Development | 914 | 33 | 881 | |
| Payroll Processing Fees | 983 | 983 |
All Other Expenses AllOtherExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 36 | Total |
| Management And General | 36 | ManagementAndGeneral |
Total Functional Expenses TotalFunctionalExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 315643 | Total |
| Program Services | 298589 | ProgramServices |
| Management And General | 12827 | ManagementAndGeneral |
| Fundraising | 4227 | Fundraising |
Cash Non Interest Bearing CashNonInterestBearing
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 28811 | BOY |
| EOY | 28438 | EOY |
Savings And Temp Cash Investments SavingsAndTempCashInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Pledges And Grants Receivable PledgesAndGrantsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Accounts Receivable AccountsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Receivables From Officers Etc ReceivablesFromOfficersEtc
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Receivables From Disqual Persons ReceivablesFromDisqualPersons
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Other Notes Loans Receivable Net OtherNotesLoansReceivableNet
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Inventories For Sale Or Use InventoriesForSaleOrUse
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Prepaid Expenses Deferred Charges PrepaidExpensesDeferredCharges
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Buildings Equipment Basis | 2487 | LandBuildingsEquipmentBasis |
| Land Bldg Equipment Accum Deprec | 2120 | LandBldgEquipmentAccumDeprec |
Land Buildings Equipment Basis Net LandBuildingsEquipmentBasisNet
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1606 | BOY |
| EOY | 367 | EOY |
Investments Pub Traded Securities InvestmentsPubTradedSecurities
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Investments Other Securities InvestmentsOtherSecurities
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Investments Program Related InvestmentsProgramRelated
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Intangible Assets IntangibleAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 8703 | BOY |
| EOY | 6309 | EOY |
Other Assets Total OtherAssetsTotal
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | 0 | EOY |
Total Assets TotalAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 39120 | BOY |
| EOY | 35114 | EOY |
Total Liabilities TotalLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 0 | BOY |
| EOY | 0 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Follow SFAS117 | X | FollowSFAS117 |
Unrestricted Net Assets UnrestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 39120 | BOY |
| EOY | 35114 | EOY |
Total Net Assets Fund Balances TotalNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 39120 | BOY |
| EOY | 35114 | EOY |
Total Liab Net Assets Fund Balances TotalLiabNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 39120 | BOY |
| EOY | 35114 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expenses | -4006 | ReconcilationRevenueExpenses |
| Info In Schedule O Part XII | X | InfoInScheduleOPartXII |
| Method Of Accounting Other | X | MethodOfAccountingOther |
| Accountant Compile Or Review | false | AccountantCompileOrReview |
| FS Audited | false | FSAudited |
| Federal Grant Audit Required | false | FederalGrantAuditRequired |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Publicly Supported Org170b1 Avi | X | PubliclySupportedOrg170b1Avi |
Gifts Grants Contrib Received170 GiftsGrantsContribReceived170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 87314 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 164579 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 151732 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 245993 | CurrentTaxYearMinus1Year |
| Current Tax Year | 311636 | CurrentTaxYear |
| Total | 961254 | Total |
Tax Rev Levied For Org Benefit170 TaxRevLeviedForOrgBenefit170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Value Srvc Fclts Furnished By Govt ValueSrvcFcltsFurnishedByGovt
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Total170 Total170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 87314 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 164579 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 151732 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 245993 | CurrentTaxYearMinus1Year |
| Current Tax Year | 311636 | CurrentTaxYear |
| Total | 961254 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Amounts Subst Contributors Total | 831340 | AmountsSubstContributorsTotal |
| Public Support Total170 | 129914 | PublicSupportTotal170 |
Gross Investment Income170 GrossInvestmentIncome170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Net UBI NetUBI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
Other Income170 OtherIncome170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 0 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | 961254 | TotalSupport |
| Public Support Pertcentage170 | 0.13520 | PublicSupportPertcentage170 |
| Public Support Pertcent Prior Year | 0.13350 | PublicSupportPertcentPriorYear |
| Ten Percent Test Current Year | X | TenPercentTestCurrentYear |
| Facts And Circumstances Test | Part II, Line 17a--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 organization's support can be broadened in the near term:-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 grantwriting, and intends to seek more training in these areas. The E.D. recently completed the Duke University certificate program for nonprofit management.-With the growth in newsletter sign-ups to over 1,000 subscribers and the growth of our Facebook likes to over 1,400 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. While this will likely continue to be a significant source of support, the E.D. has identified several 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 organization's continued status as a public charity:-The board of directors is comprised of individuals representative of the community: a private 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 organization's 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. | FactsAndCircumstancesTest |
Schedule B IRS990ScheduleB
Contributor Info ContributorInfo
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor Number | RESTRICTED | ContributorNumber |
Contributor Name Business ContributorNameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor Address US ContributorAddressUS
| 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) |
|---|---|---|
| Aggregate Contributions | RESTRICTED | AggregateContributions |
Schedule D IRS990ScheduleD
Equipment Equipment
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | 2487 | OtherCostOrOtherBasis |
| Depreciation | 2120 | Depreciation |
| Book Value | 367 | BookValue |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Book Value Land Buildings | 367 | TotalOfBookValueLandBuildings |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Records Maintained | true | RecordsMaintained |
| Total Nbr Of501 C3 And Govt Grants | 0 | TotalNbrOf501C3AndGovtGrants |
| Total Nbr Of Other Organizations | 0 | TotalNbrOfOtherOrganizations |
Form990 Schedule I Part III Form990ScheduleIPartIII
| Field | Value | IRS element (for citing) |
|---|---|---|
| Type Of Grant | Travel expenses to attend camp | TypeOfGrant |
| Number Of Recipients | 200 | NumberOfRecipients |
| Amount Of Cash Grant | 81652 | AmountOfCashGrant |
Form990 Schedule I Part IV Form990ScheduleIPartIV
| Field | Value | IRS element (for citing) |
|---|---|---|
| Identifier | Grantmaker's Description of How Grants are Used | Identifier |
| 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. | Explanation |
Schedule O IRS990ScheduleO
General Explanation GeneralExplanation (4 entries)
| IdentifierIdentifier | Return ReferenceReturnReference | ExplanationExplanation |
|---|---|---|
| Form 990, Part VI, Line 19 | 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. |
| Form 990, Part VI, Line 15a | 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 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 12c | 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 11b | 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. |
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