NATIONAL FABRY DISEASE FOUNDATION: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL FABRY DISEASE FOUNDATION (EIN 20-2944028)
- Tax period
- 2024-06-01 to 2025-05-31
- Filed
- 2025-10-14
- IRS object ID
- 202522879349301202
- Schema version
- 2024v5.2
- 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 | 2025-10-14T08:52:11-05:00 | ReturnTs |
| Tax Period End | 2025-05-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 561304727 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | BLACKMAN & SLOOP ADVISORS INC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1414 RALEIGH ROAD SUITE 300 | AddressLine1Txt |
| City | CHAPEL HILL | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27517 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2024-06-01 | 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 | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 9197322799 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 144 E KING ST 1419 | AddressLine1Txt |
| City | HILLSBOROUGH | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27278 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | GERALD WALTER | PersonNm |
| Person Title | BOARD CHAIR | PersonTitleTxt |
| Phone | 9197322799 | PhoneNum |
| Signature | 2025-10-13 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | Yes (1) | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ELIZABETH MAUCH | PreparerPersonNm |
| PTIN | P01988953 | PTIN |
| Phone | 9199428700 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | 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 | 144 E KING ST 1419 | AddressLine1Txt |
| City | HILLSBOROUGH | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27278 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $592,005 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| 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 AWARENESS; AND TO PROMOTE RESEARCH TO IMPROVE THE MANAGEMENT AND TREATMENT OF FABRY DISEASE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 6 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 5 | VotingMembersIndependentCnt |
| Total Employee | 4 | TotalEmployeeCnt |
| Total Volunteers | 63 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $571,255 | PYContributionsGrantsAmt |
| CY Contributions Grants | $581,175 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $4,046 | PYInvestmentIncomeAmt |
| CY Investment Income | $10,830 | CYInvestmentIncomeAmt |
| PY Other Revenue | $0 | PYOtherRevenueAmt |
| CY Other Revenue | $0 | CYOtherRevenueAmt |
| PY Total Revenue | $575,301 | PYTotalRevenueAmt |
| CY Total Revenue | $592,005 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $139,353 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $131,994 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $264,979 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $325,165 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $8,834 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $278,178 | PYOtherExpensesAmt |
| CY Other Expenses | $281,796 | CYOtherExpensesAmt |
| PY Total Expenses | $682,510 | PYTotalExpensesAmt |
| CY Total Expenses | $738,955 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$107,209 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$146,950 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $413,847 | TotalAssetsBOYAmt |
| Total Assets EOY | $269,505 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $0 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $2,608 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $413,847 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $266,897 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | 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. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $484,454 | ExpenseAmt |
| Grant | $131,994 | GrantAmt |
| Desc | 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 THAT CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST POSSIBLE AGE, ALLOWING FOR APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH INDIVIDUALS WHO ARE UNDIAGNOSED WITH FABRY DISEASE BY RAISING AWARENESS OF THE SYMPTOMS ASSOCIATED WITH THIS CONDITION. WE CONTINUED TO PROVIDE EDUCATION AND AWARENESS ABOUT FABRY DISEASE IN VARIOUS FORMS, SUCH AS OUR ROBUST EDUCATIONAL WEBSITE AT WWW.FABRYDISEASE.ORG; OUR ANNUAL FAMILY EDUCATION CONFERENCE; MONTHLY VIRTUAL FAMILY EDUCATION MEETINGS (OUR 60 EDUCATIONAL VIDEOS LISTED IN A VIDEO INDEX FLYER), VARIOUS MATERIALS SUCH AS AN A FABRY TESTING FLYER, A CHART OF PRIMARY FINANCIAL ASSISTANT PROGRAMS FOR FABRY, A MENTAL HEALTH PROGRAMS RESOURCE FOR FABRY, FLYER WITH TIPS FOR PEOPLE RECEIVING ENZYME REPLACEMENT AND CHAPERONE THERAPIES, AND A HOT DAYS WITH FABRY FLYER, OUR FACEBOOK PAGE OF MORE THAN 4,300 FOLLOWERS, PERIODIC TWEETS ON OUR X PAGE, OUR PERIODIC FABRY FOCUS E-NEWSLETTER, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE HAVE EXPANDED OUR SOCIAL MEDIA EDUCATION CAMPAIGN WITH INSTAGRAM, LINKEDIN, AND TIKTOK. WE ARE IN CONTACT WITH OVER 3,000 FABRY FOCUS E-NEWLETTER SUBSCRIBERS. REPORTS FROM OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM PROVIDE INVALUABLE INFORMATION TO INFORM PATIENTS AND PHYSICIANS AND PROVIDE INSIGHTS TO STIMULATE ADDITIONAL RESEARCH. WE INCREASE AWARENESS FOR APRIL FABRY DISEASE AWARENESS MONTH BY PROVIDING DAILY SOCIAL MEDIA AND E-NEWSLETTER EDUCATIONAL UPDATES. PUBLISHED LITERATURE INDICATES 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $212,618 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | COMMUNITY SUPPORT: THE NFDF COMMUNITY SUPPORT PROGRAM AND ASSISTANCE PROGRAM IS PROVIDED TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES. THE NFDF HOSTED ITS 13TH ANNUAL FABRY FAMILY CAMP AT VICTORY JUNCTION IN RANDLEMAN, NC. WE PROVIDED DAILY PHONE CALLS, EMAILS, AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED PATIENTS AND FAMILIES WITH A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS AND MANY INNOVATIVE RESOURCES TO HELP PATIENTS/FAMILIES NAVIGATE DISEASE TESTING, FINANCIAL MANAGEMENT ASSISTANCE, MENTAL HEALTH ASSISTANCE, AND OTHER NEEDS. WE 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 CONTINUED TO PROVIDE MY-HEALTH-HANDBOOK-KITS FOR EMERGENCY SITUATIONS. WE FACILITATED TESTING FOR DIAGNOSES AND ACCESS TO TREATMENT. WE CONTINUED TO ADD FABRY SPECIALISTS TO OUR FIND-A-FABRY-SPECIALIST SEARCHABLE DATABASE ON OUR WEBSITE. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $697,072 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | 0 | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | 0 | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | 0 | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (1) | GrantsToIndividualsInd |
| Schedule J Required | 0 | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 0 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 4 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | 0 | QuidProQuoContributionsInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 6 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 5 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | 0 | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | 0 | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | GERALD WALTER | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 9197322799 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 144 E KING ST 1419 | AddressLine1Txt |
| City | HILLSBOROUGH | CityNm |
| State Abbreviation | NC | StateAbbreviationCd |
| ZIP | 27278 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (7 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| GERALD WALTER | |||||||
| CHAIR | 40.00 | Yes (X) | Yes (X) | $122,499 | $0 | $3,675 | |
| DEREK HALBERG | |||||||
| VICE CHAIR | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| TRACY MYATT | |||||||
| SECRETARY | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| MELANIE WILSON | |||||||
| TREASURER | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| ELIZABETH GAFFIN | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| STEVEN ROTHMAN | |||||||
| DIRECTOR | 1.00 | Yes (X) | $0 | $0 | $0 | ||
| CASEY A MCKENNA | |||||||
| SENIOR PROGRAM MANAGER | 40.00 | $101,136 | $0 | $5,000 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $223,635 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $8,675 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 2 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | 0 | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| All Other Contributions | $581,175 | AllOtherContributionsAmt |
| Total Contributions | $581,175 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $10,830 | TotalRevenueColumnAmt |
| Exclusion | $10,830 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $592,005 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $10,830 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,000 | TotalAmt |
| Program Services | $10,000 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $121,994 | TotalAmt |
| Program Services | $121,994 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $127,508 | TotalAmt |
| Program Services | $121,133 | ProgramServicesAmt |
| Management And General | $3,825 | ManagementAndGeneralAmt |
| Fundraising | $2,550 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $161,065 | TotalAmt |
| Program Services | $153,012 | ProgramServicesAmt |
| Management And General | $4,832 | ManagementAndGeneralAmt |
| Fundraising | $3,221 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,800 | TotalAmt |
| Program Services | $14,060 | ProgramServicesAmt |
| Management And General | $444 | ManagementAndGeneralAmt |
| Fundraising | $296 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,792 | TotalAmt |
| Program Services | $20,702 | ProgramServicesAmt |
| Management And General | $654 | ManagementAndGeneralAmt |
| Fundraising | $436 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,811 | TotalAmt |
| Management And General | $3,811 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $49,733 | TotalAmt |
| Program Services | $48,117 | ProgramServicesAmt |
| Management And General | $1,216 | ManagementAndGeneralAmt |
| Fundraising | $400 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $340 | TotalAmt |
| Management And General | $340 | ManagementAndGeneralAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,448 | TotalAmt |
| Program Services | $9,257 | ProgramServicesAmt |
| Management And General | $2,191 | ManagementAndGeneralAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,078 | TotalAmt |
| Program Services | $2,711 | ProgramServicesAmt |
| Management And General | $3,296 | ManagementAndGeneralAmt |
| Fundraising | $1,071 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $50,049 | TotalAmt |
| Program Services | $49,958 | ProgramServicesAmt |
| Management And General | $91 | ManagementAndGeneralAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $129,120 | TotalAmt |
| Program Services | $127,074 | ProgramServicesAmt |
| Management And General | $2,046 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,323 | TotalAmt |
| Management And General | $1,323 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,578 | TotalAmt |
| Management And General | $1,578 | ManagementAndGeneralAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| NON OFFICE SUPPLIES | $13,225 | $12,276 | $567 | $382 |
| EDUCATION | $3,145 | $271 | $2,874 | |
| BANK FEES | $2,840 | $2,600 | $240 | |
| MEALS AND ENTERTAINMENT | $2,821 | $2,821 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,285 | TotalAmt |
| Program Services | $3,686 | ProgramServicesAmt |
| Management And General | $1,361 | ManagementAndGeneralAmt |
| Fundraising | $238 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $738,955 | TotalAmt |
| Program Services | $697,072 | ProgramServicesAmt |
| Management And General | $33,049 | ManagementAndGeneralAmt |
| Fundraising | $8,834 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $205,648 | BOYAmt |
| EOY | $62,799 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $204,046 | BOYAmt |
| EOY | $204,046 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $10,127 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $8,150 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,295 | BOYAmt |
| EOY | $1,977 | EOYAmt |
Intangible Assets IntangibleAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $395 | BOYAmt |
| EOY | $391 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $463 | BOYAmt |
| EOY | $292 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $413,847 | BOYAmt |
| EOY | $269,505 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $2,608 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $2,608 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $413,847 | BOYAmt |
| EOY | $266,897 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $413,847 | BOYAmt |
| EOY | $266,897 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $413,847 | BOYAmt |
| EOY | $269,505 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$146,950 | ReconcilationRevenueExpnssAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | 0 | FSAuditedInd |
| Federal Grant Audit Required | 0 | 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 | $188,701 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $572,188 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $307,957 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $571,225 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $581,175 | CurrentTaxYearAmt |
| Total | $2,221,246 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $188,701 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $572,188 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $307,957 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $571,225 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $581,175 | CurrentTaxYearAmt |
| Total | $2,221,246 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,713,013 | SubstantialContributorsTotAmt |
| Public Support Total170 | $508,233 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus1 Year | $4,046 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $10,830 | CurrentTaxYearAmt |
| Total | $14,876 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $2,236,122 | TotalSupportAmt |
| Public Support CY170 | 0.22730 | PublicSupportCY170Pct |
| Public Support PY170 | 0.24060 | PublicSupportPY170Pct |
| Ten Pct Facts Crcmstncs Test CY | Yes (X) | TenPctFactsCrcmstncsTestCYInd |
| Facts And Circumstances Test | THE ORGANIZATION'S BOARD IS COMMITTED TO MEETING THE 33 1/3% PUBLIC SUPPORT TEST AND HAS ENACTED SEVERAL PROGRAMS INCLUDING FACEBOOK FUNDRAISING AND AMAZON SMILE TO INCREASE IT'S DONOR BASE. DUE TO THE NATURE OF THIS RARE DISEASE, THE BASE OF SUPPORT IS SOMEWHAT LIMITED TO DONORS WHO ARE KNOWLEDGABLE ABOUT THE DISEASE. OVER 93% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $240 PER CONTRIBUTION. HOWEVER, THE REMAINING DONORS CONTRIBUTE SUCH LARGE DOLLAR AMOUNTS RELATIVE TO THE INDIVIDUAL DONORS THAT IT IS DIFFICULT TO QUALIFY FOR THE 33% SUPPORT TEST. THE ORGANIZATION'S PERCENTAGE IN 2024 WAS 22.73% - A MINOR DECREASE FROM 2023. THE BOARD REMAINS COMMITTED TO INCREASING THE DONOR BASE. | 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 | $10,127 | OtherCostOrOtherBasisAmt |
| Depreciation | $8,150 | DepreciationAmt |
| Book Value | $1,977 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $1,977 | TotalBookValueLandBuildingsAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
Recipient Table RecipientTable
Recipient Business Name RecipientBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FABRY SUPPORT AND INFORMATION GROUP | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 108 NE 2ND STREET | AddressLine1Txt |
| City | CONCORDIA | CityNm |
| State Abbreviation | MO | StateAbbreviationCd |
| ZIP | 64020 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Recipient EIN | 431890134 | RecipientEIN |
| IRC Section | 501(C)3 | IRCSectionDesc |
| Cash Grant | $10,000 | CashGrantAmt |
| Non Cash Assistance | $0 | NonCashAssistanceAmt |
| Purpose Of Grant | TO SUPPORT FABRY NEWBORN SCREENING INITIATIVES AS A MEMBER OF THE LYSOSOMAL STORAGE DISEASE COALITION. | PurposeOfGrantTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Type | INDIVIDUAL | GrantTypeTxt |
| Recipient | 56 | RecipientCnt |
| Cash Grant | $121,994 | CashGrantAmt |
| Valuation Method Used | PURCHASE PRICE | ValuationMethodUsedDesc |
| Non Cash Assistance | PROVIDED GRANTS TO INDIVIDUALS WITH FABRY DISEASE THROUGH OUR URGENT AND UNMET NEEDS ASSISTANCE PROGRAM - INCLUDES SHORT-TERM ASSISTANCE FOR HEALTH INSURANCE PREMIUM PAYMENTS, MINOR MEDICAL EXPENSES, OCCASIONAL CAR PAYMENTS AND REPAIRS, TRANSPORTATION, RENT, AND UTILITY BILLS IN EMERGENCIES. IN ADDITION, ASSISTANCE WAS PROVIDED TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES TO ATTEND OUR ANNUAL EDUCATIONAL CONFERENCE AND CAMP AND OTHER EDUCATIONAL EVENTS. | NonCashAssistanceDesc |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (5 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 8B | THE ORGANIZATION DOES NOT HAVE ANY COMMITTEES. |
| FORM 990, PART VI, SECTION B, LINE 11B | PRIOR TO FILING, FORM 990 WILL BE REVIEWED BY THE CHAIRMAN AND TREASURER AND THEN DISTRIBUTED TO THE FULL BOARD FOR REVIEW. |
| FORM 990, PART VI, SECTION B, LINE 12C | THE CONFLICT OF INTEREST POLICY IS REVIEWED AND SIGNED BY EACH BOARD MEMBER ANNUALLY. |
| FORM 990, PART VI, SECTION B, LINE 15A | 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. AN ANALYSIS WAS PERFORMED TO ENSURE THE SALARY FOR OUR FULL-TIME EDUCATION AND COMMUNITY SUPPORT STAFF MEMBER IS APPROPRIATE AND IN LINE WITH PEERS. |
| FORM 990, PART VI, SECTION C, LINE 19 | 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. |
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