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NATIONAL SCLERODERMA FOUNDATION: Form 990, tax year 2019

View the entire original 990 at ProPublica ↗

Organization
NATIONAL SCLERODERMA FOUNDATION (EIN 52-1375827)
Tax period
2019-07-01 to 2020-06-30
Filed
2021-01-12
IRS object ID
202130129349300528
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)
Return2021-01-12T12:55:11-06:00ReturnTs
Tax Period End2020-06-30TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN043077056PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1MOODY FAMIGLIETTI & ANDRONICO LLPBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line11 HIGHWOOD DRIVEAddressLine1Txt
CityTEWKSBURYCityNm
State AbbreviationMAStateAbbreviationCd
ZIP01876ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2019-07-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN521375827EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1SCLERODERMA FOUNDATION INCBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlSCLEBusinessNameControlTxt
Phone8007224673PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1300 ROSEWOOD DRIVE NO 105AddressLine1Txt
CityDANVERSCityNm
State AbbreviationMAStateAbbreviationCd
ZIP01923ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonROBERT J RIGGSPersonNm
Person TitleCHIEF EXECUTIVE OFFICERPersonTitleTxt
Phone8007224673PhoneNum
Signature2021-01-11SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonMATTHEW KALIL CPA MBAPreparerPersonNm
PTINP01517069PTIN
Phone9785575300PhoneNum
Preparation2021-01-11PreparationDt
FieldValueIRS element (for citing)
Tax2019TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerROBERT J RIGGSPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1300 ROSEWOOD DRIVE NO 105AddressLine1Txt
CityDANVERSCityNm
State AbbreviationMAStateAbbreviationCd
ZIP01923ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$6,433,133GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.SCLERODERMA.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1993FormationYr
Legal Domicile StateILLegalDomicileStateCd
Activity Or MissionSCLERODERMA FOUNDATION'S MISSION IS THREEFOLD: 1) SUPPORT TO HELP PATIENTS AND THEIR FAMILIES COPE WITH SCLERODERMA THROUGH MUTUAL SUPPORT PROGRAMS, PEER COUNSELING, PHYSICIAN REFERRALS, AND EDUCATIONAL INFORMATION. 2) EDUCATION TO PROMOTE PUBLIC AWARENESS AND EDUCATION THROUGH PATIENT AND HEALTH PROFESSIONAL SEMINARS, LITERATURE, AND PUBLICITY CAMPAIGNS. AND 3) RESEARCH TO STIMULATE AND SUPPORT RESEARCH TO IMPROVE TREATMENTS AND, ULTIMATELY, FIND THE CAUSE OF AND CURE FOR SCLERODERMA.ActivityOrMissionDesc
Voting Members Governing Body13VotingMembersGoverningBodyCnt
Voting Members Independent13VotingMembersIndependentCnt
Total Employee24TotalEmployeeCnt
Total Volunteers713TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$4,326,448PYContributionsGrantsAmt
CY Contributions Grants$3,405,450CYContributionsGrantsAmt
PY Program Service Revenue$114,876PYProgramServiceRevenueAmt
CY Program Service Revenue$128,846CYProgramServiceRevenueAmt
PY Investment Income$217,861PYInvestmentIncomeAmt
CY Investment Income$247,976CYInvestmentIncomeAmt
PY Other Revenue$70,121PYOtherRevenueAmt
CY Other Revenue$29,435CYOtherRevenueAmt
PY Total Revenue$4,729,306PYTotalRevenueAmt
CY Total Revenue$3,811,707CYTotalRevenueAmt
PY Grants And Similar Paid$1,242,545PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,200,545CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,362,399PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,415,946CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$207,761CYTotalFundraisingExpenseAmt
PY Other Expenses$2,193,359PYOtherExpensesAmt
CY Other Expenses$2,395,570CYOtherExpensesAmt
PY Total Expenses$4,798,303PYTotalExpensesAmt
CY Total Expenses$5,012,061CYTotalExpensesAmt
PY Revenues Less Expenses-$68,997PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,200,354CYRevenuesLessExpensesAmt
Total Assets BOY$12,200,138TotalAssetsBOYAmt
Total Assets EOY$11,612,013TotalAssetsEOYAmt
Total Liabilities BOY$1,781,516TotalLiabilitiesBOYAmt
Total Liabilities EOY$2,097,634TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$10,418,622NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$9,514,379NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionSCLERODERMA FOUNDATION'S MISSION IS THREEFOLD: 1) SUPPORT TO HELP PATIENTS AND THEIR FAMILIES COPE WITH SCLERODERMA THROUGH MUTUAL SUPPORT PROGRAMS, PEER COUNSELING, PHYSICIAN REFERRALS, AND EDUCATIONAL INFORMATION. 2) EDUCATION TO PROMOTE PUBLIC AWARENESS AND EDUCATION THROUGH PATIENT AND HEALTH PROFESSIONAL SEMINARS, LITERATURE, AND PUBLICITY CAMPAIGNS. AND 3) RESEARCH TO STIMULATE AND SUPPORT RESEARCH TO IMPROVE TREATMENTS AND, ULTIMATELY, FIND THE CAUSE OF AND CURE FOR SCLERODERMA.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$2,803,960ExpenseAmt
Revenue$128,846RevenueAmt
DescEDUCATION AND SUPPORT:THE SCLERODERMA FOUNDATION AND ITS CHAPTERS OFFER EDUCATIONAL PROGRAMS TO INDIVIDUALS WHO HAVE SCLERODERMA AND TO THEIR CAREGIVERS AND FAMILY MEMBERS WHO ARE ALSO IMPACTED BY THE LIFE CHANGES CAUSED BY THE DISEASE. THE FOUNDATION'S ANNUAL "NATIONAL PATIENT EDUCATION CONFERENCE", IN RECENT YEARS HAS BEEN ATTENDED BY OVER 670 INDIVIDUALS. THE PROGRAM INCLUDED ABOUT 45 WORKSHOPS AND SEMINARS PRESENTED 57 EXPERT SPEAKERS IN SYMPTOM MANAGEMENT, RESEARCH DATA, AND COPING STRATEGIES. THE CONFERENCE ALSO INCLUDED A "KIDS & TEENS" PROGRAM THAT EMPHASIZED JUVENILE SCLERODERMA, WHICH PROVIDED CHILDREN DIAGNOSED WITH SCLERODERMA AGE-APPROPRIATE LEARNING ABOUT THEIR DISEASE, AT THE SAME TIME IT HELPED PARENTS UNDERSTAND THE ILLNESS. SIBLINGS OF CHILDREN WITH SCLERODERMA AND CHILDREN OF ADULTS WITH SCLERODERMA ALSO BENEFITED FROM THE PROGRAM. ADDITIONALLY, CHAPTERS IN THE FOUNDATION OFFERED THEIR OWN LOCAL EDUCATIONAL PROGRAMMING AT DIFFERENT TIMES OF THE YEAR TO PROVIDE THE SAME RANGE OF INFORMATION ON A SMALLER SCALE CLOSER TO HOME. THESE CHAPTER EVENTS ARE TYPICALLY ONE DAY AFFAIRS AND ARE ATTENDED BY THOSE WHO ARE UNABLE TO ATTEND THE NATIONAL CONFERENCE. SCHOLARSHIPS ARE OFFERED TO DEFRAY THE COST OF THE NATIONAL CONFERENCE BASE ON AN APPLICATION PROCESS.THE FOUNDATION AND ITS CHAPTERS MAINTAIN A NETWORK OF SUPPORT GROUPS AROUND THE COUNTRY. LED BY VOLUNTEERS WHO RECEIVE RESOURCES AND TRAINING FROM THE FOUNDATION, SUPPORT GROUPS ARE FOR MANY THE FRONT LINE OF COPING WITH THE EMOTIONAL IMPACT OF THE DISEASE. CHAPTERS MANAGE GROUPS THAT OCCUR WITHIN THEIR TERRITORY, AND THE NATIONAL OFFICE MANAGES GROUPS THAT FALL OUTSIDE OF ANY CHAPTER BOUNDARY. THERE ARE APPROXIMATELY 150 SUPPORT GROUPS IN TOTAL. THE NUMBER FLUXUATES AS VOLUNTEER LEADERS START UP NEW GROUPS OR AS THEY DROP OFF. CHAPTERS AND NATIONAL STAFF WORK TO DEVELOP REPLACEMENT GROUP LEADERS. MEETING DATES, TIMES, AND LOCATIONS, PLUS GROUP LEADER CONTACTS ARE POSTED ON THE FOUNDATION WEBSITE, SCLERODERMA.ORG, TO FACILITATE ACCESS TO THE GROUPS. FROM TIME TO TIME, SEVERAL CHAPTERS OFFER TELEPHONE SUPPORT GROUPS TO ENABLE CONTACT WITHOUT THE NEED TO TRAVEL, EVEN LOCALLY. ADDITIONALLY, THE FOUNDATION MAINTAINS AN ONLINE FORUM CALLED INSPIRE.COM SO THAT INDIVIDUALS CAN SHARE PERSONAL EXPERIENCES ABOUT THEIR DISEASE. THIS ONLINE COMMUNITY IS PROMOTED VIA THE FOUNDATION'S WEBSITE, THROUGH ITS SOCIAL MEDIA PLATFORMS, AND PRINT PUBLICATIONS.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,280,376ExpenseAmt
Grant$1,200,545GrantAmt
Revenue$29,435RevenueAmt
DescRESEARCH:THE SCLERODERMA FOUNDATION FUNDED PEER-REVIEWED, SCLERODERMA RESEARCH PROJECTS. EACH AWARD WAS $150,000 SPREAD OVER MULTIPLE YEARS. FOUR WERE TWO-YEAR ESTABLISHED INVESTIGATOR AWARDS, AND THREE WERE THREE-YEAR NEW INVESTIGATOR AWARDS. GRANTS ARE AWARDED FOLLOWING A PEER-REVIEW PROCESS THAT UTILIZES THE SAME SCORING METHOD FOLLOWED BY THE NATIONAL INSTITUTE OF HEALTH. THE PEER REVIEW PANEL IS COMPRISED OF INDEPENDENT SCIENTISTS, WHO DO NOT RECEIVE FUNDING FROM THE FOUNDATION. THEY REVIEW THE GRANT SUBMISSIONS INDEPENDENTLY AND THEN MEET TO DISCUSS AND DETERMINE FINAL SCORES. NEW INVESTIGATOR AWARDS ARE INTENDED TO HELP EMERGING SCIENTISTS GATHER SUFFICIENT DATA TO DEMONSTRATE THE VALUE OF THEIR AREA OF INVESTIGATION AND ATTRACT LARGER FUNDING FROM OTHER SOURCES, SUCH AS THE NATIONAL INSTITUTES OF HEALTH. ESTABLISHED INVESTIGATOR AWARDS ARE GIVEN TO INVESTIGATORS WHO HAVE YEARS OF EXPERIENCE, BUT ARE EXPLORING INNOVATIVE IDEAS THAT WOULD FALL OUTSIDE MAINSTREAM FUNDING SOURCES. FOUNDATION MONIES ARE PROVIDED TO DEMONSTRATE THE VIABILITY OF THEIR CONCEPT AND POSITION THEM FOR MORE SUBSTANTIAL GRANTS FROM LARGER FUNDING INSTITUTIONS.Desc
FieldValueIRS element (for citing)
Total Program Service Expenses$4,084,336TotalProgramServiceExpensesAmt
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 EndowmentsYes (1)DonorRstrOrQuasiEndowmentsInd
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 Org0MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
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 Document11IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee24EmployeeCnt
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 Members13GoverningBodyVotingMembersCnt
Independent Voting Member13IndependentVotingMemberCnt
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 FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAZStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldHIStatesWhereCopyOfReturnIsFldCd
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 FldMEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
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 FldMOStatesWhereCopyOfReturnIsFldCd
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 FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
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 FldWAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1THE ORGANIZATIONBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone8007224673PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1300 ROSEWOOD DRIVE NO 105AddressLine1Txt
CityDANVERSCityNm
State AbbreviationMAStateAbbreviationCd
ZIP01923ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (14 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtIndividual Trustee Or DirectorIndividualTrusteeOrDirectorIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerInd
KEVIN BOYANOWSKI
DIRECTOR2.00Yes (X)$0$0$0
JANE LADAS
DIRECTOR2.00Yes (X)$0$0$0
CHRISTINA LOCCKE
DIRECTOR2.00Yes (X)$0$0$0
MARY BLADES
DIRECTOR2.00Yes (X)$0$0$0
MARY BETH TOURBIN
DIRECTOR2.00Yes (X)$0$0$0
MARK OROZCO
DIRECTOR2.00Yes (X)$0$0$0
LINDA BAUM
DIRECTOR2.00Yes (X)$0$0$0
MARCIA WALKER
DIRECTOR2.00Yes (X)$0$0$0
CYNDY BESSELIEVRE
DIRECTOR2.00Yes (X)$0$0$0
COS MALLOZZI
CHAIR2.00Yes (X)$0$0$0Yes (X)
CAROL FEGHALI-BOSTWICK PHD
VICE CHAIR2.00Yes (X)$0$0$0Yes (X)
MIKE LEVENGOOD
SECRETARY2.00Yes (X)$0$0$0Yes (X)
GREG MARION
TREASURER2.00Yes (X)$0$0$0Yes (X)
ROBERT J RIGGS
CEO40.00$115,042$0$13,897Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$115,042TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$13,897TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (2 entries)

Address Line1ContractorAddress/USAddress/AddressLine1TxtCityContractorAddress/USAddress/CityNmState AbbreviationContractorAddress/USAddress/StateAbbreviationCdZIPContractorAddress/USAddress/ZIPCdServicesServicesDescCompensationCompensationAmt
BLACKBAUD INC
PO BOX 930256ATLANTAGA31193WEBSITE SUPPORT$128,020
BROGAN & PARTNERS
535 WOODWARD HEIGHTSFERNDALEMI48220EVENT & EDUCATION SERVICES$121,000
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K2CntrctRcvdGreaterThan100KCnt
Fundraising$42,981FundraisingAmt
All Other Contributions$3,362,469AllOtherContributionsAmt
Total Contributions$3,405,450TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescREGISTRATION FEESDesc
Business611710BusinessCd
Total Revenue Column$128,846TotalRevenueColumnAmt
Related Or Exempt Func Income$128,846RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$128,846TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$180,407TotalRevenueColumnAmt
Exclusion$180,407ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$2,531,309SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$2,463,740SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$67,569SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$67,569TotalRevenueColumnAmt
Exclusion$67,569ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$157,686FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$42,981ContriRptFundraisingEventAmt
Fundraising Direct Expenses$157,686FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescRETURNED GRANT AWARDSDesc
Business900099BusinessCd
Total Revenue Column$29,435TotalRevenueColumnAmt
Related Or Exempt Func Income$29,435RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$29,435OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$3,811,707TotalRevenueColumnAmt
Related Or Exempt Func Income$158,281RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$247,976ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$1,200,000TotalAmt
Program Services$1,200,000ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$545TotalAmt
Program Services$545ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$131,114TotalAmt
Program Services$76,046ProgramServicesAmt
Management And General$41,957ManagementAndGeneralAmt
Fundraising$13,111FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,081,941TotalAmt
Program Services$731,570ProgramServicesAmt
Management And General$268,810ManagementAndGeneralAmt
Fundraising$81,561FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$12,794TotalAmt
Program Services$7,724ProgramServicesAmt
Management And General$3,893ManagementAndGeneralAmt
Fundraising$1,177FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$97,618TotalAmt
Program Services$58,645ProgramServicesAmt
Management And General$29,896ManagementAndGeneralAmt
Fundraising$9,077FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$92,479TotalAmt
Program Services$61,663ProgramServicesAmt
Management And General$23,622ManagementAndGeneralAmt
Fundraising$7,194FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$20,307TotalAmt
Management And General$20,307ManagementAndGeneralAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$30,400TotalAmt
Management And General$30,400ManagementAndGeneralAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$47,738TotalAmt
Management And General$47,738ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$261,994TotalAmt
Program Services$215,560ProgramServicesAmt
Management And General$23,758ManagementAndGeneralAmt
Fundraising$22,676FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$7,393TotalAmt
Program Services$5,668ProgramServicesAmt
Management And General$1,725ManagementAndGeneralAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$159,368TotalAmt
Program Services$110,787ProgramServicesAmt
Management And General$25,534ManagementAndGeneralAmt
Fundraising$23,047FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$249,148TotalAmt
Program Services$146,474ProgramServicesAmt
Management And General$78,706ManagementAndGeneralAmt
Fundraising$23,968FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$177,631TotalAmt
Program Services$126,550ProgramServicesAmt
Management And General$39,157ManagementAndGeneralAmt
Fundraising$11,924FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$68,227TotalAmt
Program Services$45,510ProgramServicesAmt
Management And General$22,717ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$658,526TotalAmt
Program Services$641,634ProgramServicesAmt
Management And General$16,611ManagementAndGeneralAmt
Fundraising$281FundraisingAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$479,589TotalAmt
Program Services$479,589ProgramServicesAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$6,943TotalAmt
Program Services$4,525ProgramServicesAmt
Management And General$1,853ManagementAndGeneralAmt
Fundraising$565FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$64,783TotalAmt
Program Services$38,085ProgramServicesAmt
Management And General$20,465ManagementAndGeneralAmt
Fundraising$6,233FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
ADVOCACY$86,130$86,130
FEES AND LICENSES$65,842$39,131$20,476$6,235
MISCELLANEOUS$8,993$5,942$2,339$712
OUTREACH$2,558$2,558

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$5,012,061TotalAmt
Program Services$4,084,336ProgramServicesAmt
Management And General$719,964ManagementAndGeneralAmt
Fundraising$207,761FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$2,174,510BOYAmt
EOY$2,170,807EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$608,653BOYAmt
EOY$205,356EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$166,944BOYAmt
EOY$58,410EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$149,214BOYAmt
EOY$135,016EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$205,667LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$177,525LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$17,485BOYAmt
EOY$28,142EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$8,864,083BOYAmt
EOY$8,726,153EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$219,249BOYAmt
EOY$288,129EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$12,200,138BOYAmt
EOY$11,612,013EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$168,690BOYAmt
EOY$185,509EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$1,417,500BOYAmt
EOY$1,587,500EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$128,542BOYAmt
EOY$0EOYAmt

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

FieldValueIRS element (for citing)
EOY$249,962EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$66,784BOYAmt
EOY$74,663EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,781,516BOYAmt
EOY$2,097,634EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$8,618,498BOYAmt
EOY$7,711,504EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,800,124BOYAmt
EOY$1,802,875EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,418,622BOYAmt
EOY$9,514,379EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$12,200,138BOYAmt
EOY$11,612,013EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$1,200,354ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$296,111NetUnrlzdGainsLossesInvstAmt
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$3,939,641CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,581,460CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,193,403CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,326,448CurrentTaxYearMinus1YearAmt
Current Tax Year$3,405,450CurrentTaxYearAmt
Total$20,446,402TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,939,641CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$4,581,460CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,193,403CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,326,448CurrentTaxYearMinus1YearAmt
Current Tax Year$3,405,450CurrentTaxYearAmt
Total$20,446,402TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$2,173,446SubstantialContributorsTotAmt
Public Support Total170$18,272,956PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$172,568CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$166,672CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$169,963CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$175,015CurrentTaxYearMinus1YearAmt
Current Tax Year$180,407CurrentTaxYearAmt
Total$864,625TotalAmt
FieldValueIRS element (for citing)
Total Support$21,311,027TotalSupportAmt
Gross Receipts Rltd Activities$530,563GrossReceiptsRltdActivitiesAmt
Public Support CY1700.85740PublicSupportCY170Pct
Public Support PY1700.84090PublicSupportPY170Pct
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 D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$1,627,038BeginningYearBalanceAmt
Contributions$31,682ContributionsAmt
Investment Earnings Or Losses$101,713InvestmentEarningsOrLossesAmt
Other Expenditures$101,713OtherExpendituresAmt
End Year Balance$1,658,720EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$1,662,877BeginningYearBalanceAmt
Investment Earnings Or Losses$115,953InvestmentEarningsOrLossesAmt
Other Expenditures$151,792OtherExpendituresAmt
End Year Balance$1,627,038EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$1,916,225BeginningYearBalanceAmt
Investment Earnings Or Losses$65,063InvestmentEarningsOrLossesAmt
Other Expenditures$318,411OtherExpendituresAmt
End Year Balance$1,662,877EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$1,886,371BeginningYearBalanceAmt
Investment Earnings Or Losses$114,671InvestmentEarningsOrLossesAmt
Other Expenditures$84,817OtherExpendituresAmt
End Year Balance$1,916,225EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$2,056,133BeginningYearBalanceAmt
Investment Earnings Or Losses$30,238InvestmentEarningsOrLossesAmt
Other Expenditures$200,000OtherExpendituresAmt
End Year Balance$1,886,371EndYearBalanceAmt
FieldValueIRS element (for citing)
Board Designated Balance EOY0.07000BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY0.93000PrmnntEndowmentBalanceEOYPct
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org0EndowmentsHeldRelatedOrgInd

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$8,393OtherCostOrOtherBasisAmt
Depreciation$8,393DepreciationAmt
Book Value$0BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$118,946OtherCostOrOtherBasisAmt
Depreciation$91,499DepreciationAmt
Book Value$27,447BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$78,328OtherCostOrOtherBasisAmt
Depreciation$77,633DepreciationAmt
Book Value$695BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$28,142TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescDUE TO AFFILIATESDesc
Amt$74,663Amt
FieldValueIRS element (for citing)
Total Liability$74,663TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$4,060,080TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$296,111NetUnrealizedGainsInvstAmt
Revenue Not Reported$296,111RevenueNotReportedAmt
Revenue Subtotal$3,763,969RevenueSubtotalAmt
Investment Expenses Not Incld$47,738InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$47,738RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$3,811,707TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$4,964,323TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$4,964,323ExpensesSubtotalAmt
Investment Expenses Not Incld2$47,738InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$47,738ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$5,012,061TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART V, LINE 4:THE ENDOWMENT CONSISTS OF A FUNDS RESTRICTED IN PERPETUITY ESTABLISHED IN 2007 AND BOARD DESIGNATED ENDOWMENT FUNDS. THE ENDOWMENT IS TO SUPPORT RESEARCH FOR THE DISEASE SCLERODERMA.
PART X, LINE 2:THE ORGANIZATION IS A NONPROFIT CORPORATION AS DESCRIBED IN SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND IS EXEMPT FROM FEDERAL AND STATE INCOME TAXES ON TRADE OR BUSINESS PROFITS GENERATED BY ACTIVITIES RELATED TO THE ORGANIZATION'S EXEMPT FUNCTION. THE ORGANIZATION MAY BE SUBJECT TO FEDERAL AND STATE INCOME TAXES FOR PROFITS GENERATED FROM TRADE OR BUSINESS ACTIVITIES UNRELATED TO THE ORGANIZATION'S EXEMPT FUNCTION. AS OF JUNE 30, 2020, MANAGEMENT BELIEVES THAT THE ORGANIZATION HAS NOT GENERATED ANY UNRELATED BUSINESS TAXABLE INCOME. THE ORGANIZATION ASSESSES THE RECORDING OF UNCERTAIN TAX POSITIONS BY EVALUATING THE MINIMUM RECOGNITION THRESHOLD AND MEASUREMENT REQUIREMENTS A TAX POSITION MUST MEET BEFORE BEING RECOGNIZED AS A BENEFIT IN THE FINANCIAL STATEMENTS. THE ORGANIZATION'S POLICY IS TO RECOGNIZE INTEREST AND PENALTIES ACCRUED ON ANY UNCERTAIN TAX POSITIONS AS A COMPONENT OF INCOME TAX EXPENSE, IF ANY, IN ITS STATEMENT OF ACTIVITIES.

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1COCONUT CREEK STEPPING OUT WALKEvent1Nm
Gross Receipts Event1$51,100GrossReceiptsEvent1Amt
Charitable Contri Event1$10,945CharitableContriEvent1Amt
Gross Revenue Event1$40,155GrossRevenueEvent1Amt
Other Direct Expenses Event1$40,155OtherDirectExpensesEvent1Amt
Event2DETROIT STEPPING OUT WALKEvent2Nm
Gross Receipts Event2$49,930GrossReceiptsEvent2Amt
Charitable Contri Event2$10,695CharitableContriEvent2Amt
Gross Revenue Event2$39,235GrossRevenueEvent2Amt
Other Direct Expenses Event2$39,235OtherDirectExpensesEvent2Amt
Other Events Total87OtherEventsTotalCnt
Gross Receipts Other Events$99,637GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$21,341CharitableContriOtherEventsAmt
Gross Revenue Other Events$78,296GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$78,296OthDirectExpnssOtherEventsAmt
Gross Receipts Total$200,667GrossReceiptsTotalAmt
Charitable Contributions Tot$42,981CharitableContributionsTotAmt
Gross Revenue Total Events$157,686GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$157,686OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$157,686DirectExpenseSummaryEventsAmt
Net Income Summary$0NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd

Recipient Table RecipientTable (8 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
HOSPITAL FOR SPECIAL SURGERY
535 EAST 70TH STREETNEW YORKNY10021131624135501(C)3$150,000RESEARCH
REGENTS OF UNIVERSITY OF MICHIGAN
3003 S STATE STREETANN ARBORMI48109386006309501(C)3$150,000RESEARCH
ANN & ROBERT H CHILDREN'S HOSPITAL OF CHICAGO
225 E CHICAGO AVE BOX 205CHICAGOIL60611362170833501(C)3$150,000RESEARCH
UNIVERSITY OF ROCHESTER
ORPA 518 HYLAN BLDG BOX 270140ROCHESTERNY14627160743209501(C)3$150,000RESEARCH
MASSACHUSETTS GENERAL HOSPITAL
55 FRUIT STREETBOSTONMA02114042697983501(C)3$150,000RESEARCH
JOHNS HOPKINS UNIVERSITY
733 N BROADWAY MRB 117BALTIMOREMD21205520595110501(C)3$150,000RESEARCH
TRUSTEES OF BOSTON UNIVERSITY BUMC
85 EAST NEWTON STREET M-921BOSTONMA02118042103547501(C)3$150,000RESEARCH
UNIVERSITY OF PITTSBURGH
123 UNIVERSITY PLACEPITTSBURGHPA15213250965591501(C)3$150,000RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org8Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationAS PART OF ITS MISSION, THE SCLERODERMA FOUNDATION GIVES GRANTS TO RESEARCHERS WORKING TO FIND BETTER TREATMENTS, THE CAUSE AND, HOPEFULLY, THE CURE FOR SCLERODERMA AND RELATED COMORBID CONDITIONS. THE FOUNDATION FUNDS BOTH CLINICAL AND BENCH RESEARCH FROM NEW AND ESTABLISHED INVESTIGATORS. SPECIFIC CRITERIA HAVE BEEN SET AND MUST BE MET IN THE RESEARCH GRANT PROPOSAL IN ORDER FOR IT TO BE CONSIDERED FOR FUNDING. COMPLETE GUIDELINES ARE AVAILABLE ON THE SCLERODERMA FOUNDATION WEB SITE AT WWW.SCLERODERMA.ORG/RESEARCH. TO HELP ENSURE THAT THE FOUNDATION FUNDS THE MOST PROMISING RESEARCH IN A NON-BIASED MANNER, IT HAS A LONG-STANDING PEER REVIEW PROGRAM THAT MIRRORS THE REVIEW AND FUNDING PROTOCOLS ESTABLISHED BY THE NATIONAL INSTITUTE OF HEALTH (NIH). IN THE PEER REVIEW PROCESS, AN INDEPENDENT PANEL OF EXPERTS IS CREATED THAT REVIEWS, EVALUATES AND SCORES EACH OF THE GRANT SUBMISSIONS. EVERY GRANT APPLICATION HAS A PRIMARY AND SECONDARY PEER REVIEWER WHO INDEPENDENTLY EVALUATES AND SCORES THE GRANT APPLICATION. SCORES RANGE FROM 1 (THE HIGHEST LEVEL) TO 3 (THE LOWEST LEVEL), WITH FRACTIONAL RANGES IN BETWEEN (I.E., SCORES OF 2.5, 2.8, ETC.). THESE TWO SCORES ARE THEN DISCUSSED BY THE ENTIRE PEER REVIEW PANEL OF EXPERTS WHO WEIGH IN ON THE QUALITY OF THE SCIENCE PROPOSED IN THE GRANT REQUEST. SUCCESS OF A GRANT APPLICATION IS BASED ON AN AVERAGE SCORE OF THE PEER REVIEW COMMITTEE. THE SCLERODERMA FOUNDATION'S PEER REVIEW GUIDELINES HAVE ESTABLISHED THAT A SCORE OF 2 OR HIGHER IS REQUIRED TO BE CONSIDERED A FUNDABLE GRANT. THOSE THAT SCORE LOWER THAN A 2 ARE REJECTED.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (5 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BPRIOR TO FILING, THE FORM 990 IS GIVEN TO ALL BOARD MEMBERS FOR REVIEW. ANY QUESTIONS ARE ANSWERED BY EITHER MANGEMENT OF THE ORGANIZATION OR THE INDEPENDENT AUDITOR.
FORM 990, PART VI, SECTION B, LINE 12CA WRITTEN CONFLICT OF INTEREST POLICY IS ESTABLISHED WHICH DESCRIBES AND PROHIBITS TRANSACTIONS AND/OR RELATIONSHIPS WHICH MIGHT BE CONSTRUED AS A CONFLICT OF INTEREST. BOARD MEMBERS MUST SIGN OFF ON THE CONFLICT OF INTEREST POLICY ON AN ANNUAL BASIS.
FORM 990, PART VI, SECTION B, LINE 15THE BOARD OF DIRECTORS OF THE ORGANIZATION VOTES AND APPROVES THE COMPENSATION OF THE CHIEF EXECUTIVE OFFICER (CEO). THE CEO ESTABLISHES THE COMPENSATION FOR ALL OTHER EMPLOYEES OF THE ORGANIZATION. NO BOARD MEMBERS ARE COMPENSATED.
FORM 990, PART VI, SECTION C, LINE 19THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. THE ORGANIZATION'S FINANCIAL STATEMENTS ARE ALSO AVAILABLE ON THE ORGANIZATION'S WEBSITE.
FORM 990, PART XII, LINE 2C:THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT FOR THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THIS PROCESS HAS NOT CHANGED DURING THE YEAR.