FURP.ORG / PUBLIC DATA EXPLORER

NATIONAL ORGANIZATION FOR RARE DISORDERS INC: Form 990, tax year 2019

View the entire original 990 at ProPublica ↗

Organization
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (EIN 13-3223946)
Tax period
2019-01-01 to 2019-12-31
Filed
2020-08-04
IRS object ID
202032179349300718
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)
Return2020-08-04T10:43:47-05:00ReturnTs
Tax Period End2019-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN042571780PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1AAFCPAS INCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line150 WASHINGTON STREETAddressLine1Txt
CityWESTBOROUGHCityNm
State AbbreviationMAStateAbbreviationCd
ZIP01581ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2019-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN133223946EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1NATIONAL ORGANIZATION FOR RAREBusinessNameLine1Txt
Business Name Line2DISORDERS INCBusinessNameLine2Txt
FieldValueIRS element (for citing)
Business Name ControlNATIBusinessNameControlTxt
Phone6172497300PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11900 CROWN COLONY DR 3RD FL NOAddressLine1Txt
CityQUINCYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02169ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonVINCENT J MURPHY JRPersonNm
Person TitleVICE PRESIDENT OF FINANCEPersonTitleTxt
Phone6172497300PhoneNum
Signature2020-07-21SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonCOURTNEY MCFARLAND CPAPreparerPersonNm
PTINP01645518PTIN
Phone5083669100PhoneNum
Preparation2020-07-06PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address40.70.31.102IPv4AddressTxt
FieldValueIRS element (for citing)
IP2020-07-21IPDt
IP Tm09:54:01IPTm
IP TimezoneEDIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device Id87AE54C884FF003181B05E7BF84F4C93A3EEF9A3AtSubmissionCreationDeviceId
At Submission Filing Device Id67FD54DCEB6CBC14265FA3262D2D1D14C69EA041AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2019TaxYr
Build TS2020-11-19 02:30:22ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerVINCENT J MURPHY JRPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line11900 CROWN COLONY DR 3RD FL NO 310AddressLine1Txt
CityQUINCYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02169ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$52,637,659GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.RAREDISEASES.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1983FormationYr
Legal Domicile StateNYLegalDomicileStateCd
Activity Or MissionNORD STRIVES TO IMPROVE THE LIVES OF THOSE WITH RARE DISEASES THROUGH ASSISTANCE PROGRAMS, EDUCATION, ADVOCACY AND RESEARCH.ActivityOrMissionDesc
Voting Members Governing Body15VotingMembersGoverningBodyCnt
Voting Members Independent14VotingMembersIndependentCnt
Total Employee91TotalEmployeeCnt
Total Volunteers492TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$42,070,943PYContributionsGrantsAmt
CY Contributions Grants$43,644,020CYContributionsGrantsAmt
PY Program Service Revenue$5,024,265PYProgramServiceRevenueAmt
CY Program Service Revenue$8,392,510CYProgramServiceRevenueAmt
PY Investment Income$145,033PYInvestmentIncomeAmt
CY Investment Income$595,629CYInvestmentIncomeAmt
PY Other Revenue-$117,142PYOtherRevenueAmt
CY Other Revenue-$218,782CYOtherRevenueAmt
PY Total Revenue$47,123,099PYTotalRevenueAmt
CY Total Revenue$52,413,377CYTotalRevenueAmt
PY Grants And Similar Paid$25,639,741PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$31,348,036CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$5,580,030PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$6,630,675CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$1,484,799CYTotalFundraisingExpenseAmt
PY Other Expenses$2,855,047PYOtherExpensesAmt
CY Other Expenses$3,810,983CYOtherExpensesAmt
PY Total Expenses$34,074,818PYTotalExpensesAmt
CY Total Expenses$41,789,694CYTotalExpensesAmt
PY Revenues Less Expenses$13,048,281PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$10,623,683CYRevenuesLessExpensesAmt
Total Assets BOY$50,838,028TotalAssetsBOYAmt
Total Assets EOY$61,751,096TotalAssetsEOYAmt
Total Liabilities BOY$2,127,388TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,331,773TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$48,710,640NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$59,419,323NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionNORD LEADS THE FIGHT TO IMPROVE THE LIVES OF PEOPLE AFFECTED BY RARE DISEASES THROUGH EDUCATION, PATIENT ASSISTANCE PROGRAMS, ADVOCACY, AND BY PROMOTING RESEARCH.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$32,683,732ExpenseAmt
Grant$30,812,906GrantAmt
Revenue$5,758,863RevenueAmt
DescPATIENT ASSISTANCE PROGRAMS PROVIDE FINANCIAL ASSISTANCE TO HELP ELIGIBLE PATIENTS ACCESS LIFESAVING THERAPIES AND SERVICES PRESCRIBED BY THEIR PHYSICIANS. IN 2019 NORD PROVIDED FINANCIAL ASSISTANCE TO 8,612 PEOPLE WITH RARE DISEASES. IN ADDITION, NORD WORKS WITH ORGANIZATIONS CONDUCTING CLINICAL TRIALS OF NEW TREATMENTS IN ARRANGING FOR PATIENTS WITH RARE DISEASES AND FAMILY MEMBERS TO TRAVEL TO THE SITES WHERE THE TRIALS ARE BEING CONDUCTED. IN 2019, THERE WERE 381 PATIENTS THAT NORD ASSISTED AS PART OF THAT SPECIAL CLINICAL TRIAL TRAVEL ASSISTANCE PROGRAM.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,208,255ExpenseAmt
Revenue$111,541RevenueAmt
DescNORD EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM STUDENTS OF ALL AGES, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN CREATING A BETTER UNDERSTANDING OF RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE, EDUCATIONAL WEBINARS AND VIDEOS, AND ROBUST EDUCATIONAL PROGRAMMING THROUGH NORD'S CME PARTNERSHIPS AND AT NORD'S RARE DISEASES AND ORPHAN PRODUCTS BREAKTHROUGH SUMMIT (RARE SUMMIT). IN 2019 OVER 800 PEOPLE ATTENDED NORD'S RARE SUMMIT WHERE KEY STAKEHOLDER IN THE RARE DISEASE SPACE GATHER TO LEARN, CONNECT, AND CREATE POSITIVE CHANGE FOR THE BROADER RARE DISEASE COMMUNITY. ALSO, IN 2019 THERE WERE OVER 12.5 MILLION VISITORS TO THE ORGANIZATION'S WEBSITE TO READ NORD'S RARE DISEASE REPORTS WHICH OFFER INFORMATION ABOUT EACH RARE DISEASE IN EASY TO UNDERSTAND LANGUAGE.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$1,553,178ExpenseAmt
Grant$535,130GrantAmt
Revenue$105,187RevenueAmt
DescIN 2019, NORD HAS CONTINUED TO DEVELOP ITS NATUARL HISTORY/REGISTRYPLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCEAND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. ASOF DECEMBER 31, 2019, THERE WERE 10,238 PARTICIPANTS ACROSS 30DIESASE-SPECIFIC DATABASES AS PART OF NORD'S REGISTRY PROGRAM.IN ADDITION, NORD AWARDED 10 GRANTS IN 2019 TO SUPPORT RESEARCH OF RARE DISEASES. THESE GRANTS ARE FUNDED BY CONTRIBUTIONS FROM THE PUBLIC, PATIENTS AND THEIR FAMILIES, AND PATEINT ORGANIZATIONS.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (2 entries)

ExpenseExpenseAmtRevenueRevenueAmtDescDesc
$1,142,479$2,413,919NORD'S ADVOCACY EFFORTS ARE FOCUSED ON SERVING AS A LIASON BETWEEN THERARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONSTHAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANSLIVING WITH RARE DISEASES. NORD ENGAGES ALL TYPES OF ORGANIZATIONS,INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, OTHER NON-PROFITORGANIZATIONS, AND FOR-PROFIT ORGANIZATIONS TO HELP RAISE AWARENESSAROUND THE NEEDS OF RARE DISEASE PATIENTS AND TO COLLECTIVELYCONTRIBUTE TO REALIZING SOLUTIONS POSITIVELY IMPACT OUR DIVERSECOMMUNITY.
$789,154$3,000MEMBERSHIP: NORD WAS FOUNDED ON THE PRINCIPLES OF COLLABORATION AND A UNITED VOICE, AND WE PROVIDE GUIDANCE AND SUPPORT AT ALL PHASES OF DEVELOPMENT, AS ORGANIZATIONS EVOLVE. NORD OFFERS ITS MEMBERS EDUCATIONAL WEBINARS AND REGIONAL MEMBERSHIP MEETINGS PROVIDE OPPORTUNITIES TO INTERACT WITH OTHER LEADERSHIP OF OTHER PATIENT ORGANIZATIONS AND TO BUILD CAPACITY BY ADOPTING BEST PRACTICES. AS OF DECEMBER 31, 2019 THERE WERE 296 PATIENT ORGANIZATIONS THAT WERE MEMBERS.
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$1,931,633TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Revenue$2,416,919TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses$37,376,798TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
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 LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign Office0ForeignOfficeInd
Foreign Activities0ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To IndividualsYes (1)GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
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 ContriYes (1)DeductibleNonCashContriInd
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 Document27IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee91EmployeeCnt
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 ContributionsYes (1)QuidProQuoContributionsInd
Quid Pro Quo Contri DisclYes (1)QuidProQuoContriDisclInd
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 Members15GoverningBodyVotingMembersCnt
Independent Voting Member14IndependentVotingMemberCnt
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 CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local ChaptersYes (1)LocalChaptersInd
Policies Reference ChaptersYes (1)PoliciesReferenceChaptersInd
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 OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1VINCENT MURPHYBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone6172497300PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line11900 CROWN COLONY DRIVE 3RD FLOORAddressLine1Txt
CityQUINCYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP02169ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (22 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndOfficerOfficerIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtHighest Compensated EmployeeHighestCompensatedEmployeeInd
SHELDON M SCHUSTER PHD
VICE CHAIRMAN2.00Yes (X)Yes (X)$0$0$0
STEVEN GROSSMAN
SECRETARY8.00Yes (X)Yes (X)$0$0$0
MARSHALL L SUMMAR MD
CHAIRMAN10.00Yes (X)Yes (X)$0$0$0
FREDERICK BARR MD
DIRECTOR1.00Yes (X)$0$0$0
RONALD J BARTEK
DIRECTOR5.00Yes (X)$0$0$0
SUSAN HEDSTROM
DIRECTOR2.00Yes (X)$0$0$0
VICKI MCCARRELL
DIRECTOR4.00Yes (X)$0$0$0
JIM PALMA
DIRECTOR3.00Yes (X)$0$0$0
PETER SALTONSTALL
PRESIDENT/CEO35.00Yes (X)Yes (X)$399,286$0$24,836
SUSAN BERRY
DIRECTOR2.00Yes (X)$0$0$0
KAY HOLCOMBE
DIRECTOR2.00Yes (X)$0$0$0
NEIL HORIKOSHI
DIRECTOR2.00Yes (X)$0$0$0
SHAFALI JESTE
DIRECTOR1.00Yes (X)$0$0$0
PHILIP PEARL
DIRECTOR2.00Yes (X)$0$0$0
MIKE PORATH
DIRECTOR2.00Yes (X)$0$0$0
PAMELA GAVIN
CHIEF OPERATING OFFICER35.00Yes (X)$314,643$0$22,121
VINCENT J MURPHY JR
VP FINANCE35.00Yes (X)$122,652$0$29,570
TIM EHRHARD
DIRECTOR OF IT35.00$157,641$0$31,257Yes (X)
ALEXA MOORE
VP OF DEVELOPMENT35.00$204,227$0$32,940Yes (X)
JILL POLLANDER
DIRECTOR OF PATIENT SERVICES35.00$123,058$0$21,704Yes (X)
RACHEL SHER
VP POLICY & REGULATORY AFFAIRS35.00$193,229$0$8,982Yes (X)
JAMES BERG
PRINCIPAL SOFTWARE ARCHITECT35.00$121,494$0$37,063Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$1,636,230TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$208,473TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K15IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1CLOUD FOR GOOD LLCBusinessNameLine1Txt

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line11854A HENDERSONVILLE RD 252AddressLine1Txt
CityASHEVILLECityNm
State AbbreviationNCStateAbbreviationCd
ZIP28803ZIPCd
FieldValueIRS element (for citing)
ServicesIT CONSULTANTServicesDesc
Compensation$136,111CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Membership Dues$1,665,303MembershipDuesAmt
All Other Contributions$41,978,717AllOtherContributionsAmt
Noncash Contributions$118,421NoncashContributionsAmt
Total Contributions$43,644,020TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (5 entries)

DescDescBusinessBusinessCdTotal Revenue ColumnTotalRevenueColumnAmtRelated Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt
PATIENT ASSISTANCE FEE624100$5,008,574$5,008,574
PROGRAMMATIC EVENTS AN624100$2,399,519$2,399,519
RESEARCH FEES624100$576,127$576,127
REGISTRY, WEB SUBSCRIP624100$234,128$234,128
DRUG, TRAVEL AND LODGI624100$174,162$174,162
FieldValueIRS element (for citing)
Total Program Service Revenue$8,392,510TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$595,629TotalRevenueColumnAmt
Exclusion$595,629ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$5,500FundraisingGrossIncomeAmt
Fundraising Direct Expenses$224,282FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$218,782TotalRevenueColumnAmt
Exclusion-$218,782ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$52,413,377TotalRevenueColumnAmt
Related Or Exempt Func Income$8,392,510RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$376,847ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$535,130TotalAmt
Program Services$535,130ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$30,812,906TotalAmt
Program Services$30,812,906ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$947,732TotalAmt
Program Services$370,709ProgramServicesAmt
Management And General$296,611ManagementAndGeneralAmt
Fundraising$280,412FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$4,621,791TotalAmt
Program Services$2,424,728ProgramServicesAmt
Management And General$1,584,541ManagementAndGeneralAmt
Fundraising$612,522FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$227,791TotalAmt
Program Services$132,588ProgramServicesAmt
Management And General$64,508ManagementAndGeneralAmt
Fundraising$30,695FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$450,852TotalAmt
Program Services$335,388ProgramServicesAmt
Management And General$46,464ManagementAndGeneralAmt
Fundraising$69,000FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$382,509TotalAmt
Program Services$178,533ProgramServicesAmt
Management And General$142,915ManagementAndGeneralAmt
Fundraising$61,061FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$210,828TotalAmt
Program Services$97,984ProgramServicesAmt
Management And General$102,275ManagementAndGeneralAmt
Fundraising$10,569FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$54,342TotalAmt
Management And General$54,342ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$390,592TotalAmt
Program Services$254,629ProgramServicesAmt
Management And General$85,854ManagementAndGeneralAmt
Fundraising$50,109FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$328,595TotalAmt
Program Services$81,781ProgramServicesAmt
Management And General$163,025ManagementAndGeneralAmt
Fundraising$83,789FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$538,733TotalAmt
Program Services$284,649ProgramServicesAmt
Management And General$173,268ManagementAndGeneralAmt
Fundraising$80,816FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$210,806TotalAmt
Program Services$205,780ProgramServicesAmt
Management And General$5,026ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$1,154,423TotalAmt
Program Services$917,053ProgramServicesAmt
Management And General$137,251ManagementAndGeneralAmt
Fundraising$100,119FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$545,820TotalAmt
Program Services$509,778ProgramServicesAmt
Management And General$21,811ManagementAndGeneralAmt
Fundraising$14,231FundraisingAmt

Other Expenses OtherExpensesGrp

FieldValueIRS element (for citing)
DescMISCELLANEOUSDesc
Total$376,844TotalAmt
Program Services$235,162ProgramServicesAmt
Management And General$50,206ManagementAndGeneralAmt
Fundraising$91,476FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$41,789,694TotalAmt
Program Services$37,376,798ProgramServicesAmt
Management And General$2,928,097ManagementAndGeneralAmt
Fundraising$1,484,799FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$38,371,222BOYAmt
EOY$2,468,342EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$7,705,613BOYAmt
EOY$45,239,712EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$2,687,602BOYAmt
EOY$11,775,250EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$316,998BOYAmt
EOY$353,136EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$4,260,301LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$2,772,540LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$1,625,587BOYAmt
EOY$1,487,761EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
EOY$136,831EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$107,063BOYAmt
EOY$189,191EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$23,943BOYAmt
EOY$100,873EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$50,838,028BOYAmt
EOY$61,751,096EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$595,138BOYAmt
EOY$921,186EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$474,078BOYAmt
EOY$746,474EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$585,652BOYAmt
EOY$223,059EOYAmt

Mortg Notes Pybl Scrd Invst Prop MortgNotesPyblScrdInvstPropGrp

FieldValueIRS element (for citing)
BOY$368,468BOYAmt
EOY$304,223EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$104,052BOYAmt
EOY$136,831EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$2,127,388BOYAmt
EOY$2,331,773EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$3,289,240BOYAmt
EOY$5,041,320EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$45,421,400BOYAmt
EOY$54,378,003EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$48,710,640BOYAmt
EOY$59,419,323EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$50,838,028BOYAmt
EOY$61,751,096EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss$10,623,683ReconcilationRevenueExpnssAmt
Prior Period Adjustments$85,000PriorPeriodAdjustmentsAmt
Other Changes In Net Assets$0OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
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$20,322,996CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$37,862,150CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$48,281,104CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$42,070,943CurrentTaxYearMinus1YearAmt
Current Tax Year$45,370,270CurrentTaxYearAmt
Total$193,907,463TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$20,322,996CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$37,862,150CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$48,281,104CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$42,070,943CurrentTaxYearMinus1YearAmt
Current Tax Year$45,370,270CurrentTaxYearAmt
Total$193,907,463TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$115,887,981SubstantialContributorsTotAmt
Public Support Total170$78,019,482PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$157,483CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$418,492CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$21,741CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$145,033CurrentTaxYearMinus1YearAmt
Current Tax Year$595,629CurrentTaxYearAmt
Total$1,338,378TotalAmt
FieldValueIRS element (for citing)
Total Support$195,245,841TotalSupportAmt
Gross Receipts Rltd Activities$21,498,279GrossReceiptsRltdActivitiesAmt
Public Support CY1700.39960PublicSupportCY170Pct
Public Support PY1700.44310PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

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 C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$12,666FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$325,095FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$337,761FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$41,451,933FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$41,789,694FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$1,000,000FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$250,000FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year$1,000,000CurrentYearAmt
Total$1,000,000TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$1,500,000LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year$337,761CurrentYearAmt
Total$337,761TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year$250,000CurrentYearAmt
Total$250,000TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$375,000GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year$12,666CurrentYearAmt
Total$12,666TotalAmt

Schedule D IRS990ScheduleD

Land LandGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$505,203OtherCostOrOtherBasisAmt
Book Value$505,203BookValueAmt

Buildings BuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$857,182OtherCostOrOtherBasisAmt
Depreciation$536,110DepreciationAmt
Book Value$321,072BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$31,731OtherCostOrOtherBasisAmt
Depreciation$22,144DepreciationAmt
Book Value$9,587BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$2,866,185OtherCostOrOtherBasisAmt
Depreciation$2,214,286DepreciationAmt
Book Value$651,899BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$1,487,761TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescDEFERRED COMPENSATIONDesc
Amt$136,831Amt
FieldValueIRS element (for citing)
Total Liability$136,831TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$52,722,659TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts$85,000DonatedServicesAndUseFcltsAmt
Other Revenue$224,282OtherRevenueAmt
Revenue Not Reported$309,282RevenueNotReportedAmt
Revenue Subtotal$52,413,377RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt$0RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$52,413,377TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$42,098,976TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$85,000DonatedServicesUseFcltsAmt
Other Expenses Included$224,282OtherExpensesIncludedAmt
Expenses Not Reported$309,282ExpensesNotReportedAmt
Expenses Subtotal$41,789,694ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt$0ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$41,789,694TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART X, LINE 2:NORD ACCOUNTS FOR UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH ASC TOPIC, INCOME TAXES. THIS STANDARD CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN TAX POSITIONS AND PRESCRIBES A RECOGNITION THRESHOLD AND MEASUREMENT ATTRIBUTE FOR THE FINANCIAL STATEMENTS REGARDING A TAX POSITION TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN. NORD HAS DETERMINED THAT THERE ARE NO UNCERTAIN TAX POSITIONS WHICH QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS AT DECEMBER 31, 2019. NORD'S INFORMATION RETURNS ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS.
PART XI, LINE 2D - OTHER ADJUSTMENTS:FUNDRAISING EXPENSES 224,282.
PART XII, LINE 2D - OTHER ADJUSTMENTS:FUNDRAISING EXPENSES 224,282.

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees0SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee0TotalEmployeeCnt
Subtotal Spent$0SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$0TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (2 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtValuation Method UsedValuationMethodUsedDesc
NORTH AMERICARESEARCH GRANT$25,000BOOK
EUROPE (INCLUDING ICELAND & GREENLAND)RESEARCH GRANT$15,000BOOK
FieldValueIRS element (for citing)
Total501c3 Org2Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART III ACCOUNTING METHOD:FormAndLineReferenceDesc

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1ANNUAL GALAEvent1Nm
Gross Receipts Event1$5,500GrossReceiptsEvent1Amt
Gross Revenue Event1$5,500GrossRevenueEvent1Amt
Rent Facility Costs Event1$19,375RentFacilityCostsEvent1Amt
Food And Beverage Event1$104,429FoodAndBeverageEvent1Amt
Entertainment Event1$25,500EntertainmentEvent1Amt
Other Direct Expenses Event1$74,978OtherDirectExpensesEvent1Amt
Gross Receipts Total$5,500GrossReceiptsTotalAmt
Gross Revenue Total Events$5,500GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$19,375RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$104,429FoodAndBeverageTotalEventsAmt
Entertainment Total Events$25,500EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$74,978OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$224,282DirectExpenseSummaryEventsAmt
Net Income Summary-$218,782NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (1)GrantRecordsMaintainedInd

Recipient Table RecipientTable (10 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINCash GrantCashGrantAmtValuation Method UsedValuationMethodUsedDescPurpose Of GrantPurposeOfGrantTxt
BAYLOR COLLEGE OF MEDICINE
1 BAYLOR PLAZAHOUSTONTX77030741613878$25,000BOOKRESEARCH GRANT.
FOX CHASE CANCER CENTER
333 COTTMAN AVENUEPHILADELPHIAPA19111232003072$15,000BOOKRESEARCH GRANT.
JOHNS HOPKINS UNIVERSITY
3901 KESWICK ROAD SUITE N4327BBALTIMOREMD21211831496989$55,000BOOKRESEARCH GRANT.
UNIVERSITY OF FLORIDA
3410 PALM BEACH BLVDFT MYERSFL33916453450561$14,733BOOKRESEARCH GRANT.
WAKE FOREST UNIVERSITY HEALTH SCIENCES
MEDICAL CENTER BLVDWINSTONSALEMNC27157223849199$25,000BOOKRESEARCH GRANT.
DUKE UNIVERSITY
316 TEER BUILDING BOX 90271DURHAMNC27708560532129$25,000BOOKRESEARCH GRANT.
UNIVERSITY OF PITTSBURGH
3959 FIFTH AVENUEPITTSBURGPA15213250965591$22,500BOOKRESEARCH GRANT.
BRIGHAM & WOMENS HOSPITAL
399 REVOLUTION DRIVE NO 645SOMERVILLEMA02145042312909$25,000BOOKRESEARCH GRANT.
UNIVERSITY OF NEBRASKA - LINCOLN
1400 R STREET ROOM 200NULINCOLNNE68588263670790$15,500BOOKRESEARCH GRANT.
(no name)
RESEARCH GRANT.
FieldValueIRS element (for citing)
Total501c3 Org9Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypePATIENT ASSISTANCE PROGRAMSGrantTypeTxt
Recipient8231RecipientCnt
Cash Grant$30,812,906CashGrantAmt
Valuation Method UsedBOOKValuationMethodUsedDesc

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationANY GRANTS AND SUPPORT GIVEN ARE CLOSELY MONITORED VIA REVIEW OF BACKUP DOCUMENTATION AND PROOF OF EXPENSE.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Written Employment ContractYes (X)WrittenEmploymentContractInd
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (7 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
PETER SALTONSTALL
PRESIDENT/CEO$399,286$0$0$0$0$0$14,000$0$10,836$0$424,122$0$0$0
PAMELA GAVIN
CHIEF OPERATING OFFICER$314,643$0$0$0$0$0$14,000$0$8,121$0$336,764$0$0$0
VINCENT J MURPHY JR
VP FINANCE$122,652$0$0$0$0$0$6,623$0$22,947$0$152,222$0$0$0
TIM EHRHARD
DIRECTOR OF IT$157,641$0$0$0$0$0$8,240$0$23,017$0$188,898$0$0$0
ALEXA MOORE
VP OF DEVELOPMENT$204,227$0$0$0$0$0$10,537$0$22,403$0$237,167$0$0$0
RACHEL SHER
VP POLICY & REGULATORY AFFAIRS$193,229$0$0$0$0$0$7,710$0$1,272$0$202,211$0$0$0
JAMES BERG
PRINCIPAL SOFTWARE ARCHITECT$121,494$0$0$0$0$0$6,430$0$30,633$0$158,557$0$0$0

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 3FormAndLineReferenceDesc
ExplanationTHE BOARD OF DIRECTORS REVIEWS EXTERNAL SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR'S COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION.ExplanationTxt

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution4ContributionCnt
Noncash Contributions Rpt F990$118,421NoncashContributionsRptF990Amt
Method Of Determining RevenuesFAIR VALUEMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts0ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BTHE 990 IS REVIEWED BY THE VP OF FINANCE, CEO, FINANCE COMMITTEE, AND AUDIT COMMITTEE PRIOR TO FILING. THE 990 IS PROVIDED TO ALL MEMBERS OF THE BOARD OF DIRECTORS FOR REVIEW PRIOR TO BEING FILED.
FORM 990, PART VI, SECTION B, LINE 12CTHE BOARD OF DIRECTORS ARE REQUIRED TO COMPLETE AN ANNUAL REVIEW OF THE ORGANIZATION'S CONFLICT OF INTEREST POLICY. THE MEMBERS OF THE BOARD ARE ANNUALLY REQUIRED TO REPORT IF THEY HAVE OR DO NOT HAVE ANY KNOWN CONFLICTS OF INTEREST. THE EXECUTIVE COMMITTEE IS ALSO REQUIRED TO ANNUALLY SIGN OFF AS TO ANY KNOWN CONFLICTS THAT EXIST.
FORM 990, PART VI, SECTION B, LINE 15THE BOARD OF DIRECTORS REVIEWS EXTERNAL MARKET SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION.
FORM 990, PART VI, SECTION C, LINE 19GOVERNING DOCUMENTS ARE MADE AVAILABLE UPON REQUEST.
FORM 990, PART XII, LINE 2C:THE BOARD OF DIRECTORS ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT.