BETA

NATIONAL FABRY DISEASE FOUNDATION: Form 990, tax year 2019

View the entire original 990 at ProPublica ↗

Organization
NATIONAL FABRY DISEASE FOUNDATION (EIN 20-2944028)
Tax period
2019-06-01 to 2020-05-31
Filed
2020-10-05
IRS object ID
202002799349300215
Schema version
2019v5.1
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

FieldValueIRS element (for citing)
Return2020-10-05T10:09:53-05:00ReturnTs
Tax Period End2020-05-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN561304727PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1BLACKMAN & SLOOP CPAS PABusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11414 RALEIGH RD SUITE 300AddressLine1Txt
CityCHAPEL HILLCityNm
State AbbreviationNCStateAbbreviationCd
ZIP27517ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2019-06-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN202944028EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATIONAL FABRY DISEASE FOUNDATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlNATIBusinessNameControlTxt
Phone8006519131PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line14301 CONNECTICUT AVE NW NO 404AddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20008ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonGERALD WALTERPersonNm
Person TitleBOARD CHAIRPersonTitleTxt
Phone8006519131PhoneNum
Signature2020-09-01SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonELIZABETH MAUCHPreparerPersonNm
PTINP01988953PTIN
Phone9199428700PhoneNum

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address64.88.174.3IPv4AddressTxt
FieldValueIRS element (for citing)
IP2020-09-01IPDt
IP Tm08:04:42IPTm
IP TimezoneEDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id32ED7560156983D61D5C941DFE29E9D50EEDD940AtSubmissionCreationDeviceId
At Submission Filing Device Id92CBB6418953F528229437A486F4D50858FA3534AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2019TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerGERALD WALTERPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1318 FOX HILL FARM DRIVEAddressLine1Txt
CityHILLSBOROUGHCityNm
State AbbreviationNCStateAbbreviationCd
ZIP27278ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$544,803GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressHTTP://WWW.FABRYDISEASE.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation2005FormationYr
Legal Domicile StateVALegalDomicileStateCd
Activity Or MissionTO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND TREATED IN TIME TO AVOID A DIMINISHED QUALITY OF LIFE AND LIFE THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS; AND TO PROMOTE RESEARCH TO IMPROVE TREATMENT FOR FABRY DISEASE.ActivityOrMissionDesc
Voting Members Governing Body8VotingMembersGoverningBodyCnt
Voting Members Independent7VotingMembersIndependentCnt
Total Employee2TotalEmployeeCnt
Total Volunteers75TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$394,250PYContributionsGrantsAmt
CY Contributions Grants$544,803CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$0PYInvestmentIncomeAmt
CY Investment Income$0CYInvestmentIncomeAmt
PY Other Revenue$0PYOtherRevenueAmt
CY Other Revenue$0CYOtherRevenueAmt
PY Total Revenue$394,250PYTotalRevenueAmt
CY Total Revenue$544,803CYTotalRevenueAmt
PY Grants And Similar Paid$113,905PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$94,951CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$134,679PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$134,145CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$5,302CYTotalFundraisingExpenseAmt
PY Other Expenses$185,366PYOtherExpensesAmt
CY Other Expenses$164,859CYOtherExpensesAmt
PY Total Expenses$433,950PYTotalExpensesAmt
CY Total Expenses$393,955CYTotalExpensesAmt
PY Revenues Less Expenses-$39,700PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$150,848CYRevenuesLessExpensesAmt
Total Assets BOY$219,230TotalAssetsBOYAmt
Total Assets EOY$370,078TotalAssetsEOYAmt
Total Liabilities BOY$0TotalLiabilitiesBOYAmt
Total Liabilities EOY$0TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$219,230NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$370,078NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTO 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 Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$153,865ExpenseAmt
Grant$94,951GrantAmt
DescEDUCATION AND AWARENESS: EARLY INTERVENTION IMPROVES MANY ADVERSE QUALITY-OF-LIFE SYMPTOMS AND EXTENDS PATIENTS' LIFE EXPECTANCY. OUR FAMILY AND PHYSICIAN EDUCATION PROGRAMS HELP TO ENSURE CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST AGE POSSIBLE TO RECEIVE APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH UNDIAGNOSED INDIVIDUALS BY RAISING AWARENESS OF THE SYMPTOMS OF FABRY DISEASE. WE PROVIDED EDUCATION AND AWARENESS ABOUT FABRY DISEASE IN VARIOUS FORMS SUCH AS OUR ROBUST EDUCATIONAL WEBSITE AT WWW.FABRYDISEASE.ORG; OUR ANNUAL FAMILY EDUCATION CONFERENCE; VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION, HAND-OUT AND CALENDAR, A FABRY COMMUNITY LANDSCAPE DOCUMENT, FREQUENT (OFTEN DAILY) EDUCATIONAL POSTS ON OUR FACE BOOK PAGE OF ABOUT 3,600 FOLLOWERS, PERIODIC TWEETS ON OUR TWITTER PAGE, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE ARE IN CONTACT WITH OVER 1,200 ADULTS WITH FABRY DISEASE BY EMAIL. OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM YIELDED MORE THAN 200 PARTICIPANTS IN FY19-FY20. WE FACILITATED REQUESTS BY STATE FABRY COMMUNITY REPRESENTATIVES FOR ABOUT 40 STATE GOVERNOR'S PROCLAMATIONS FOR APRIL FABRY DISEASE AWARENESS MONTH. UNFORTUNATELY ONLY 21 STATE PROCLAMATIONS WERE RECEIVED THIS YEAR BECAUSE OF COVID-19 DISRUPTIONS; 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

FieldValueIRS element (for citing)
Expense$212,116ExpenseAmt
DescCOMMUNITY SUPPORT: PROVIDE SUPPORT AND ASSISTANCE TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. OUR COMMUNITY SUPPORT PROGRAM IS DIRECTED TO PEOPLE LIVING WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED DAILY PHONE CALLS, EMAIL AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS AND FAMILIES WITH FABRY DISEASE. WE PROVIDED PATIENTS AND FAMILIES A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS, PURCHASED MANY JOURNAL ARTICLES TO SHARE WITH THE COMMUNITY, PROVIDED TRANSPORTATION AND OTHER ASSISTANCE TO ATTEND FABRY EDUCATIONAL MEETINGS, PROVIDED FINANCIAL ASSISTANCE FOR ONE-TIME OR SHORT TERM NEEDS NOT COVERED BY OTHER PROGRAMS, AND 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. WE CONDUCTED AN ANNUAL CAMP FOR CHILDREN AND FAMILIES TO CONNECT AND SHARE EXPERIENCES. WE PROVIDED ASSISTANCE TO BRING 32 FAMILIES TO CAMP FROM ACROSS THE COUNTRY. BECAUSE THE DISEASE IS RARE, MANY PATIENTS AND THEIR FAMILIES DO NOT KNOW ANYONE ELSE LIVING WITH FABRY DISEASE. THE MUTUAL SUPPORT CONNECTIONS MADE THROUGH OUR CAMP PROGRAM ARE INVALUABLE WITHIN THE COMMUNITY.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$365,981TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying Activities0LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 Footnote0IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt0IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising Activities0FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To Organizations0GrantsToOrganizationsInd
Grants To IndividualsYes (1)GrantsToIndividualsInd
Schedule J Required0ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri0DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document0IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Employee2EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo Contributions0QuidProQuoContributionsInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members8GoverningBodyVotingMembersCnt
Independent Voting Member7IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of Committees0MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process Other0CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1GERALD WALTERBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone8006519131PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 1325AddressLine1Txt
CityCARRBOROCityNm
State AbbreviationNCStateAbbreviationCd
ZIP27510ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (8 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerInd
DOUGLAS WARNOCK
DIRECTOR1.00Yes (X)$0$0$0
STEVEN ROTHMAN
DIRECTOR1.00Yes (X)$0$0$0
ELIZABETH GAFFIN
DIRECTOR1.00Yes (X)$0$0$0
TRACEY KRASNOW
DIRECTOR1.00Yes (X)$0$0$0
GERALD WALTER
CHAIR40.00$109,200$0$3,276Yes (X)
DEREK HALBERG
VICE CHAIR1.00$0$0$0Yes (X)
TRACY MYATT
SECRETARY1.00$0$0$0Yes (X)
MELANIE WILSON
TREASURER1.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$109,200TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$3,276TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
All Other Contributions$544,803AllOtherContributionsAmt
Total Contributions$544,803TotalContributionsAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$544,803TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$0ExclusionAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$94,951TotalAmt
Program Services$94,951ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$112,476TotalAmt
Program Services$106,852ProgramServicesAmt
Management And General$3,374ManagementAndGeneralAmt
Fundraising$2,250FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$12,028TotalAmt
Program Services$11,426ProgramServicesAmt
Management And General$361ManagementAndGeneralAmt
Fundraising$241FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$368TotalAmt
Program Services$350ProgramServicesAmt
Management And General$11ManagementAndGeneralAmt
Fundraising$7FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$9,273TotalAmt
Program Services$8,810ProgramServicesAmt
Management And General$278ManagementAndGeneralAmt
Fundraising$185FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$5,300TotalAmt
Management And General$5,300ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$18,810TotalAmt
Program Services$18,660ProgramServicesAmt
Management And General$150ManagementAndGeneralAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$16,641TotalAmt
Program Services$10,527ProgramServicesAmt
Management And General$3,735ManagementAndGeneralAmt
Fundraising$2,379FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$4,066TotalAmt
Management And General$4,066ManagementAndGeneralAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$16,620TotalAmt
Program Services$14,895ProgramServicesAmt
Management And General$1,725ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$100,213TotalAmt
Program Services$98,306ProgramServicesAmt
Management And General$1,907ManagementAndGeneralAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$331TotalAmt
Management And General$331ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtManagement And GeneralManagementAndGeneralAmtProgram ServicesProgramServicesAmt
PAYROLL SERVICE FEE$1,058$1,058
SURVEY INCENTIVE$684$684
EDUCATION FEES$495$495
MEALS AND ENTERTAINMENT$255$255

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$386TotalAmt
Program Services$25ProgramServicesAmt
Management And General$121ManagementAndGeneralAmt
Fundraising$240FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$393,955TotalAmt
Program Services$365,981ProgramServicesAmt
Management And General$22,672ManagementAndGeneralAmt
Fundraising$5,302FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$218,486BOYAmt
EOY$369,665EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$5,899LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$5,899LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$326BOYAmt
EOY$0EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$418BOYAmt
EOY$413EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$219,230BOYAmt
EOY$370,078EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$219,230BOYAmt
EOY$370,078EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$219,230BOYAmt
EOY$370,078EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$219,230BOYAmt
EOY$370,078EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$150,848ReconcilationRevenueExpnssAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS Audited0FSAuditedInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$470,127CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$320,480CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$508,472CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$394,250CurrentTaxYearMinus1YearAmt
Current Tax Year$544,803CurrentTaxYearAmt
Total$2,238,132TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$470,127CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$320,480CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$508,472CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$394,250CurrentTaxYearMinus1YearAmt
Current Tax Year$544,803CurrentTaxYearAmt
Total$2,238,132TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$1,662,615SubstantialContributorsTotAmt
Public Support Total170$575,517PublicSupportTotal170Amt
Total Support$2,238,132TotalSupportAmt
Public Support CY1700.25710PublicSupportCY170Pct
Public Support PY1700.21690PublicSupportPY170Pct
Ten Pct Facts Crcmstncs Test CYYes (X)TenPctFactsCrcmstncsTestCYInd

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

FieldValueIRS element (for citing)
Form And Line ReferencePART II, SECTION C, LINE 17A, FACTS AND CIRCUMSTANCES TEST:FormAndLineReferenceDesc
ExplanationTHE 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 95% OF THE ORGANIZATION'S DONORS ARE FROM THE GENERAL PUBLIC, MAKING CONTRIBUTIONS AVERAGING ABOUT $80 PER CONTRIBUTION. HOWEVER, THE REMAINING DONORS CONTRIBUTE SUCH LARGE DOLLAR AMOUNTS RELATIVE TO THE INDIVIDUAL DONORS WHICH MAKES IT DIFFICULT TO QUALIFY FOR THE 33% SUPPORT TEST. THE ORGANIZATION'S PERCENTAGE IN 2019 WAS 25.71% - AN INCREASE FROM 2018 AND THE BOARD REMAINS COMMITTED TO INCREASING THE DONOR BASE.ExplanationTxt

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule D IRS990ScheduleD

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$5,899OtherCostOrOtherBasisAmt
Depreciation$5,899DepreciationAmt
Book Value$0BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$0TotalBookValueLandBuildingsAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypeINDIVIDUALGrantTypeTxt
Recipient198RecipientCnt
Non Cash Assistance$94,951NonCashAssistanceAmt
Valuation Method UsedPURCHASE PRICEValuationMethodUsedDesc
Non Cash AssistancePROVIDED GRANTS TO INDIVIDUALS FOR TRAVEL, LODGING AND MEAL ASSISTANCE TO PARTICIPATE IN EDUCATIONAL MEETINGS, MEDICAL VISITS AND OUR ANNUAL CONFERENCE AND CAMP AS WELL AS PROVIDED GRANTS TO INDIVIDUALS FOR URGENT AND UNMET MEDICAL AND LIVING EXPENSE NEEDS.NonCashAssistanceDesc

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION A, LINE 8BTHE ORGANIZATION DOES NOT HAVE ANY COMMITTEES.
FORM 990, PART VI, SECTION B, LINE 11BPRIOR 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 12CTHE CONFLICT OF INTEREST POLICY IS REVIEWED AND SIGNED BY EACH BOARD MEMBER ANNUALLY.
FORM 990, PART VI, SECTION B, LINE 15ATHE 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.
FORM 990, PART VI, SECTION C, LINE 19THE 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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