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NATIONAL SCLERODERMA FOUNDATION: Form 990, tax year 2018

View the entire original 990 at ProPublica ↗

Organization
NATIONAL SCLERODERMA FOUNDATION (EIN 52-1375827)
Tax period
2018-07-01 to 2019-06-30
Filed
2019-12-16
IRS object ID
201903509349301765
Schema version
2018v3.1
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)
Return2019-12-16T17:02:18-06:00ReturnTs
Tax Period End2019-06-30TaxPeriodEndDt

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 Begin2018-07-01TaxPeriodBeginDt

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
Signature2019-12-04SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonMATTHEW KALIL CPA MBAPreparerPersonNm
PTINP01517069PTIN
Phone9785575300PhoneNum
Preparation2019-12-04PreparationDt

Filing Security Information FilingSecurityInformation

IP Address IPAddress

FieldValueIRS element (for citing)
I Pv4 Address64.27.39.203IPv4AddressTxt
FieldValueIRS element (for citing)
IP2019-12-04IPDt
IP Tm15:20:34IPTm
IP TimezoneESIPTimezoneCd
Filing License TypePFilingLicenseTypeCd
At Submission Creation Device IdDA39A3EE5E6B4B0D3255BFEF95601890AFD80709AtSubmissionCreationDeviceId
At Submission Filing Device Id4141E4A5C25AD619B9DECADFBF31C872A80AFA19AtSubmissionFilingDeviceId
FieldValueIRS element (for citing)
Tax2018TaxYr
Build TS2020-04-17 16:48:07ZBuildTS

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$8,497,195GrossReceiptsAmt
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 Body12VotingMembersGoverningBodyCnt
Voting Members Independent12VotingMembersIndependentCnt
Total Employee28TotalEmployeeCnt
Total Volunteers981TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$4,193,403PYContributionsGrantsAmt
CY Contributions Grants$4,326,448CYContributionsGrantsAmt
PY Program Service Revenue$89,020PYProgramServiceRevenueAmt
CY Program Service Revenue$114,876CYProgramServiceRevenueAmt
PY Investment Income$647,815PYInvestmentIncomeAmt
CY Investment Income$217,861CYInvestmentIncomeAmt
PY Other Revenue$8,764PYOtherRevenueAmt
CY Other Revenue$70,121CYOtherRevenueAmt
PY Total Revenue$4,939,002PYTotalRevenueAmt
CY Total Revenue$4,729,306CYTotalRevenueAmt
PY Grants And Similar Paid$1,227,842PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$1,242,545CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,240,891PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,362,399CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$195,794CYTotalFundraisingExpenseAmt
PY Other Expenses$2,532,584PYOtherExpensesAmt
CY Other Expenses$2,193,359CYOtherExpensesAmt
PY Total Expenses$5,001,317PYTotalExpensesAmt
CY Total Expenses$4,798,303CYTotalExpensesAmt
PY Revenues Less Expenses-$62,315PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$68,997CYRevenuesLessExpensesAmt
Total Assets BOY$11,983,494TotalAssetsBOYAmt
Total Assets EOY$12,200,138TotalAssetsEOYAmt
Total Liabilities BOY$1,911,822TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,781,516TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$10,071,672NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$10,418,622NetAssetsOrFundBalancesEOYAmt
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$2,620,038ExpenseAmt
Revenue$114,876RevenueAmt
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 77 WORKSHOPS AND SEMINARS PRESENTED 69 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$1,282,868ExpenseAmt
Grant$1,242,545GrantAmt
Revenue$70,121RevenueAmt
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$3,902,906TotalProgramServiceExpensesAmt
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
Temp Or Permanent EndowmentsYes (1)TempOrPermanentEndowmentsInd
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 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 With Officer Ent0BusinessRlnWithOfficerEntInd
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 Document13IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee28EmployeeCnt
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 Members12GoverningBodyVotingMembersCnt
Independent Voting Member12IndependentVotingMemberCnt
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 (13 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
BILL MARTIN
DIRECTOR2.00Yes (X)$0$0$0
MARY BLADES
DIRECTOR2.00Yes (X)$0$0$0
KATAYUN JAFFARI
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
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$112,008$0$13,026Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$112,008TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$13,026TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K1IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K0TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1BLACKBAUD INCBusinessNameLine1Txt

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 930256AddressLine1Txt
CityATLANTACityNm
State AbbreviationGAStateAbbreviationCd
ZIP31193ZIPCd
FieldValueIRS element (for citing)
ServicesWEBSITE SUPPORTServicesDesc
Compensation$125,752CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Fundraising$186,620FundraisingAmt
All Other Contributions$4,139,828AllOtherContributionsAmt
Total Contributions$4,326,448TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescREGISTRATION FEESDesc
Business611710BusinessCd
Total Revenue Column$114,876TotalRevenueColumnAmt
Related Or Exempt Func Income$114,876RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$114,876TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$175,015TotalRevenueColumnAmt
Exclusion$175,015ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$3,575,621SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$3,532,775SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$42,846SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$42,846TotalRevenueColumnAmt
Exclusion$42,846ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$235,114FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$186,620ContriRptFundraisingEventAmt
Fundraising Direct Expenses$235,114FundraisingDirectExpensesAmt

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$70,121TotalRevenueColumnAmt
Related Or Exempt Func Income$70,121RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Other Revenue Total$70,121OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$4,729,306TotalRevenueColumnAmt
Related Or Exempt Func Income$184,997RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$217,861ExclusionAmt

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$42,545TotalAmt
Program Services$42,545ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$128,190TotalAmt
Program Services$74,350ProgramServicesAmt
Management And General$41,021ManagementAndGeneralAmt
Fundraising$12,819FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$1,027,731TotalAmt
Program Services$695,228ProgramServicesAmt
Management And General$255,108ManagementAndGeneralAmt
Fundraising$77,395FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$11,117TotalAmt
Program Services$6,719ProgramServicesAmt
Management And General$3,378ManagementAndGeneralAmt
Fundraising$1,020FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$90,101TotalAmt
Program Services$54,133ProgramServicesAmt
Management And General$27,591ManagementAndGeneralAmt
Fundraising$8,377FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$105,260TotalAmt
Program Services$70,186ProgramServicesAmt
Management And General$26,887ManagementAndGeneralAmt
Fundraising$8,187FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$28,604TotalAmt
Management And General$28,604ManagementAndGeneralAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$46,725TotalAmt
Management And General$46,725ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$125,662TotalAmt
Program Services$106,343ProgramServicesAmt
Management And General$8,132ManagementAndGeneralAmt
Fundraising$11,187FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$23,366TotalAmt
Program Services$17,915ProgramServicesAmt
Management And General$5,451ManagementAndGeneralAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$144,272TotalAmt
Program Services$99,183ProgramServicesAmt
Management And General$24,496ManagementAndGeneralAmt
Fundraising$20,593FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$282,733TotalAmt
Program Services$166,218ProgramServicesAmt
Management And General$89,316ManagementAndGeneralAmt
Fundraising$27,199FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$202,269TotalAmt
Program Services$144,103ProgramServicesAmt
Management And General$44,588ManagementAndGeneralAmt
Fundraising$13,578FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$90,085TotalAmt
Program Services$60,090ProgramServicesAmt
Management And General$29,995ManagementAndGeneralAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$697,513TotalAmt
Program Services$678,545ProgramServicesAmt
Management And General$18,652ManagementAndGeneralAmt
Fundraising$316FundraisingAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$331,718TotalAmt
Program Services$331,718ProgramServicesAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$5,207TotalAmt
Program Services$3,393ProgramServicesAmt
Management And General$1,390ManagementAndGeneralAmt
Fundraising$424FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$69,679TotalAmt
Program Services$40,963ProgramServicesAmt
Management And General$22,012ManagementAndGeneralAmt
Fundraising$6,704FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
FEES AND LICENSES$66,503$39,523$20,682$6,298
ADVOCACY$57,864$57,864
MISCELLANEOUS$20,242$12,970$5,575$1,697
OUTREACH$917$917

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$4,798,303TotalAmt
Program Services$3,902,906ProgramServicesAmt
Management And General$699,603ManagementAndGeneralAmt
Fundraising$195,794FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$2,032,531BOYAmt
EOY$2,174,510EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$596,476BOYAmt
EOY$608,653EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$267,749BOYAmt
EOY$166,944EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$165,430BOYAmt
EOY$149,214EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$188,067LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$170,582LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$5,727BOYAmt
EOY$17,485EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$8,678,211BOYAmt
EOY$8,864,083EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$237,370BOYAmt
EOY$219,249EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$11,983,494BOYAmt
EOY$12,200,138EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$198,728BOYAmt
EOY$168,690EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$1,542,380BOYAmt
EOY$1,417,500EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$84,056BOYAmt
EOY$128,542EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$86,658BOYAmt
EOY$66,784EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$1,911,822BOYAmt
EOY$1,781,516EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$8,253,794BOYAmt
EOY$8,618,498EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$275,503BOYAmt
EOY$257,749EOYAmt

Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,542,375BOYAmt
EOY$1,542,375EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$10,071,672BOYAmt
EOY$10,418,622EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$11,983,494BOYAmt
EOY$12,200,138EOYAmt
FieldValueIRS element (for citing)
Reconcilation Revenue Expnss-$68,997ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$415,947NetUnrlzdGainsLossesInvstAmt
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$4,662,117CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,939,641CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,581,460CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,193,403CurrentTaxYearMinus1YearAmt
Current Tax Year$4,326,448CurrentTaxYearAmt
Total$21,703,069TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$4,662,117CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,939,641CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$4,581,460CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$4,193,403CurrentTaxYearMinus1YearAmt
Current Tax Year$4,326,448CurrentTaxYearAmt
Total$21,703,069TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$2,729,544SubstantialContributorsTotAmt
Public Support Total170$18,973,525PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$176,313CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$172,568CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$166,672CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$169,963CurrentTaxYearMinus1YearAmt
Current Tax Year$175,015CurrentTaxYearAmt
Total$860,531TotalAmt
FieldValueIRS element (for citing)
Total Support$22,563,600TotalSupportAmt
Gross Receipts Rltd Activities$497,389GrossReceiptsRltdActivitiesAmt
Public Support CY1700.84090PublicSupportCY170Pct
Public Support PY1700.83760PublicSupportPY170Pct
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$1,662,877BeginningYearBalanceAmt
Investment Earnings Or Losses$115,953InvestmentEarningsOrLossesAmt
Other Expenditures$151,792OtherExpendituresAmt
End Year Balance$1,627,038EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

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 Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

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 Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

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

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$2,051,305BeginningYearBalanceAmt
Investment Earnings Or Losses$4,828InvestmentEarningsOrLossesAmt
End Year Balance$2,056,133EndYearBalanceAmt
FieldValueIRS element (for citing)
Board Designated Balance EOY0.05000BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY0.95000PrmnntEndowmentBalanceEOYPct
Endowments Held Unrelated Org0EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org0EndowmentsHeldRelatedOrgInd

Land LandGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$2,000OtherCostOrOtherBasisAmt
Book Value$2,000BookValueAmt

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$99,346OtherCostOrOtherBasisAmt
Depreciation$91,499DepreciationAmt
Book Value$7,847BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$78,328OtherCostOrOtherBasisAmt
Depreciation$70,690DepreciationAmt
Book Value$7,638BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$17,485TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescDUE TO AFFILIATESDesc
Amt$66,784Amt
FieldValueIRS element (for citing)
Total Liability$66,784TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$5,098,528TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$415,947NetUnrealizedGainsInvstAmt
Revenue Not Reported$415,947RevenueNotReportedAmt
Revenue Subtotal$4,682,581RevenueSubtotalAmt
Investment Expenses Not Incld$46,725InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$46,725RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$4,729,306TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$4,751,578TotExpnsEtcAuditedFinclStmtAmt
Expenses Not Reported$0ExpensesNotReportedAmt
Expenses Subtotal$4,751,578ExpensesSubtotalAmt
Investment Expenses Not Incld2$46,725InvestmentExpensesNotIncld2Amt
Expenses Not Rpt Fincl Stmt$46,725ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$4,798,303TotalExpensesPerForm990Amt

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, 2019, 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)
Event1DETROIT STEPPING OUT WALKEvent1Nm
Gross Receipts Event1$132,424GrossReceiptsEvent1Amt
Charitable Contri Event1$58,306CharitableContriEvent1Amt
Gross Revenue Event1$74,118GrossRevenueEvent1Amt
Other Direct Expenses Event1$74,118OtherDirectExpensesEvent1Amt
Event2COCONUT CREEK STEPPING OUT WALKEvent2Nm
Gross Receipts Event2$46,242GrossReceiptsEvent2Amt
Charitable Contri Event2$33,530CharitableContriEvent2Amt
Gross Revenue Event2$12,712GrossRevenueEvent2Amt
Other Direct Expenses Event2$12,712OtherDirectExpensesEvent2Amt
Other Events Total62OtherEventsTotalCnt
Gross Receipts Other Events$243,068GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$94,784CharitableContriOtherEventsAmt
Gross Revenue Other Events$148,284GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$148,284OthDirectExpnssOtherEventsAmt
Gross Receipts Total$421,734GrossReceiptsTotalAmt
Charitable Contributions Tot$186,620CharitableContributionsTotAmt
Gross Revenue Total Events$235,114GrossRevenueTotalEventsAmt
Oth Direct Expnss Total Events$235,114OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$235,114DirectExpenseSummaryEventsAmt
Net Income Summary$0NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records Maintained0GrantRecordsMaintainedInd

Recipient Table RecipientTable (8 entries)

Address Line1USAddress/AddressLine1TxtAddress Line2USAddress/AddressLine2TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
NORTHWESTERN UNIVERSITY
750 N LAKE SHORE DR RUBLOFF 7TH FLRFLRCHICAGOIL60611362167817501(C)3$150,000RESEARCH
DREXEL UNIVERSITY
OFFICE OF RESEARCH 1505 RACE STREET10TH FLOORPHILADELPHIAPA19102231352630501(C)3$100,000RESEARCH
THE MEDICAL UNIVERSITY OF SOUTH CAROLINA (GRANT 1)
179 ASHLEY AVENUECHARLESTONSC29425576000722501(C)3$150,000RESEARCH
THE MEDICAL UNIVERSITY OF SOUTH CAROLINA (GRANT 2)
179 ASHLEY AVENUECHARLESTONSC29425576000722501(C)3$150,000RESEARCH
TRUSTEES OF DARTMOUTH COLLEGE
OFFICE OF SPONSORED PROJECTS 11ROPE FERRY ROADHANOVERNH03755020222111501(C)3$150,000RESEARCH
UNIVERSITY OF PITTSBURGH
123 UNIVERSITY PLACEPITTSBURGHPA15213250965591501(C)3$150,000RESEARCH
UNIVERSITY OF UTAH
75 S 2000 ESALT LAKE CITYUT84112876000525501(C)3$150,000RESEARCH
VIRGINIA COMMONWEALTH UNIVERSITY
OFFICE OF SPONSORED PROGRAMS 800EAST LEIGH ST STE 3200 BOX 980568RICHMONDVA23298546001758501(C)3$150,000RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org7Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypeNATIONAL CONFERENCE SCHOLARSHIPGrantTypeTxt
Recipient63RecipientCnt
Cash Grant$42,545CashGrantAmt
Non Cash Assistance$0NonCashAssistanceAmt

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. THE SCLERODERMA FOUNDATION ALSO PROVIDES A LIMITED NUMBER OF SCHOLARSHIPS FOR PATIENTS AND CAREGIVERS TO ATTEND ITS ANNUAL NATIONAL PATIENT EDUCATION CONFERENCE. DONORS GIVE SPECIFICALLY TO SUPPORT THE CONFERENCE SCHOLARSHIP FUND AND ALL FUNDS GIVEN FOR THIS PURPOSE ARE USED TO FUND FULL OR PARTIAL SCHOLARSHIPS, BASED ON A DEMONSTRATED FINANCIAL NEED. A CONFIDENTIAL APPLICATION PROCESS FOR APPLYING FOR SCHOLARSHIP FUNDS HAS BEEN ESTABLISHED, THAT INCLUDES THE SUBMISSION OF THE APPLICANTS' MOST RECENT INCOME TAX RETURN TO HELP VERIFY FINANCIAL NEED. AN INDEPENDENT COMMITTEE COMPRISED OF SCLERODERMA PATIENTS, BOARD MEMBERS, AND STAFF REVIEW AND SCORE APPLICATIONS. FULL GUIDELINES FOR THE NATIONAL PATIENT EDUCATION CONFERENCE SCHOLARSHIP FUND CAN BE FOUND ON THE FOUNDATION'S WEBSITE AT WWW.SCLERODERMA.ORG/CONFERENCE.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.