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FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2023

View the entire original 990 at ProPublica ↗

Organization
FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
Tax period
2023-01-01 to 2023-12-31
Filed
2024-08-13
IRS object ID
202432269349301073
Schema version
2023v5.1
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)
Return2024-08-13T10:06:15-05:00ReturnTs
Tax Period End2023-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN871353108PreparerFirmEIN

Preparer Firm Name PreparerFirmName

FieldValueIRS element (for citing)
Business Name Line1EISNER ADVISORY GROUP LLCBusinessNameLine1Txt

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1130 NORTH 18TH STREET SUITE 3000AddressLine1Txt
CityPHILADELPHIACityNm
State AbbreviationPAStateAbbreviationCd
ZIP191032757ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2023-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN522122720EIN

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1FRIEDREICH'S ATAXIA RESEARCH ALLIANCEBusinessNameLine1Txt
FieldValueIRS element (for citing)
Business Name ControlFRIEBusinessNameControlTxt
Phone4848796160PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1PO BOX 1537AddressLine1Txt
CitySPRINGFIELDCityNm
State AbbreviationVAStateAbbreviationCd
ZIP22151ZIPCd

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonJENNIFER FARMERPersonNm
Person TitleCHIEF EXECUTIVE OFFICERPersonTitleTxt
Phone4848796160PhoneNum
Signature2024-08-08SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd
FieldValueIRS element (for citing)
IRS Responsible Prty Info Curr0IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonHELEN M MARTINPreparerPersonNm
PTINP01330899PTIN
Phone2158818800PhoneNum
FieldValueIRS element (for citing)
Tax2023TaxYr
Build TS2024-08-08 14:25:15ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerJENNIFER FARMERPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1533 W UWCHLAN AVENUEAddressLine1Txt
CityDOWNINGTOWNCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19335ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$13,561,180GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CUREFA.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1998FormationYr
Legal Domicile StateVALegalDomicileStateCd
Activity Or MissionTO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS.ActivityOrMissionDesc
Voting Members Governing Body18VotingMembersGoverningBodyCnt
Voting Members Independent16VotingMembersIndependentCnt
Total Employee17TotalEmployeeCnt
Total Volunteers500TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$11,604,349PYContributionsGrantsAmt
CY Contributions Grants$12,011,078CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$78,516PYInvestmentIncomeAmt
CY Investment Income$35,631CYInvestmentIncomeAmt
PY Other Revenue-$639,954PYOtherRevenueAmt
CY Other Revenue-$843,666CYOtherRevenueAmt
PY Total Revenue$11,042,911PYTotalRevenueAmt
CY Total Revenue$11,203,043CYTotalRevenueAmt
PY Grants And Similar Paid$9,234,269PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$9,307,077CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$1,194,386PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,461,477CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$297,535CYTotalFundraisingExpenseAmt
PY Other Expenses$704,092PYOtherExpensesAmt
CY Other Expenses$1,432,219CYOtherExpensesAmt
PY Total Expenses$11,132,747PYTotalExpensesAmt
CY Total Expenses$12,200,773CYTotalExpensesAmt
PY Revenues Less Expenses-$89,836PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$997,730CYRevenuesLessExpensesAmt
Total Assets BOY$7,260,774TotalAssetsBOYAmt
Total Assets EOY$7,752,276TotalAssetsEOYAmt
Total Liabilities BOY$430,349TotalLiabilitiesBOYAmt
Total Liabilities EOY$1,605,648TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$6,830,425NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$6,146,628NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTO MARSHAL AND FOCUS THE RESOURCES AND RELATIONSHIPS NEEDED TO CURE FA BY RAISING FUNDS FOR RESEARCH, PROMOTING PUBLIC AWARENESS AND ALIGNING SCIENTISTS, PATIENTS, CLINICIANS, GOVERNMENT AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$9,355,340ExpenseAmt
Grant$8,680,904GrantAmt
DescSEE SCHEDULE ODesc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,569,991ExpenseAmt
Grant$626,173GrantAmt
DescCLINICAL RESEARCH INFRASTRUCTUREIN ADDITION TO RESEARCH GRANTS, FARA FUNDS THE ONGOING DEVELOPMENT OF DOMAIN RESOURCES IN THE FORM OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES INCLUDE PROGRAMS LIKE: FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY: THE FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY (FAGPR) IS THE ONLY WORLDWIDE REGISTRY OF FRIEDREICH'S ATAXIA PATIENTS. THE GOALS OF THE FAGPR ARE TO COLLECT INFORMATION ON ALL FA PATIENTS IN ONE REGISTRY, TO DEVELOP THE REGISTRY INTO A POWERFUL RESOURCE FOR RESEARCH, AND TO ENGAGE THE FA COMMUNITY IN STUDIES AIMED AT ADVANCING OUR KNOWLEDGE OF FA AND THE TREATMENTS BEING DEVELOPED. FARA PARTNERS WITH INTERNATIONAL PATIENT ADVOCACY ORGANIZATIONS THROUGH A GOVERNANCE BOARD TO ENSURE MULTI-STAKEHOLDER ENGAGEMENT AND OVERSIGHT OF THE FAGPR. MORE THAN 1000 INDIVIDUALS WITH FA ARE ENROLLED AND FAGPR WAS USED TO RECRUIT FOR SEVERAL CLINICAL TRIALS AND MANY CLINICAL RESEARCH STUDIES. TO LEARN MORE, VISIT CUREFA.NET/REGISTRY. FA GLOBAL CLINICAL CONSORTIUM: FARA AND THE FA COMMUNITY'S DEDICATION TO COLLECTING NATURAL HISTORY STUDY DATA OVER THE PAST TWO DECADES PROVED INSTRUMENTAL IN THE APPROVAL OF THE FIRST-EVER TREATMENT FOR FA. THROUGH THE FA GLOBAL CLINICAL CONSORTIUM (FA GCC), FARA HAS REDOUBLED ITS INVESTMENT IN NATURAL HISTORY DATA BY ENABLING THE TRANSITION TO AN INDUSTRY-LEADING DATA COLLECTION PLATFORM AND A UNIFIED GLOBAL NATURAL HISTORY PROTOCOL (UNIFAI) RESULTING FROM THE HARMONIZATION OF TWO WELL-ESTABLISHED NATURAL HISTORY STUDIES, THE FA CLINICAL OUTCOME MEASURES STUDY (FA-COMS) AND THE EUROPEAN FRIEDREICH'S ATAXIA CONSORTIUM FOR TRANSLATIONAL STUDIES (EFACTS). THE FA GCC AND THE UNIFAI STUDY HAVE BEEN EXPANDED TO MAKE PATIENT CONTRIBUTIONS TO NATURAL HISTORY EVEN MORE POWERFUL IN UNDERSTANDING FA, EVALUATING THE IMPACT OF TREATMENT OPTIONS FOR FA, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. AT EACH UNIFAI STUDY VISIT THERE ARE MORE THAN 1400 DATA ELEMENTS RECORDED. IN 2023, THE FA GCC HAD ACTIVE PARTICIPATION FROM 54 INVESTIGATORS FROM 33 SITES REPRESENTING 18 COUNTRIES ALONG WITH REPRESENTATIVES FROM PATIENT ADVOCACY AND RESEARCH ORGANIZATIONS. FA GCC RESEARCH ACTIVITIES: THE FA GCC LEADERSHIP IDENTIFIED INITIAL SCIENTIFIC PRIORITIES AND CREATED WORKGROUPS TO ADDRESS THESE PRIORITIES. THE FOLLOWING WORK GROUPS, EACH MADE UP OF 5-10 CONSORTIUM MEMBERS, MET REGULARLY TO ADDRESS GAPS IN CURRENT FA RESEARCH: CARDIAC NATURAL HISTORY, LATE-STAGE SYMPTOMS, PEDIATRIC / PRESYMPTOMATIC, BIO-SAMPLES, MOOD AND COGNITION, AND PATIENT ADVOCACY/ADVISORY TEAM. IMPACT AND FUTURE DIRECTION: THE CONSORTIUM HAS A LONG-TERM OBJECTIVE OF FOSTERING MULTILATERAL RESEARCH AND COLLABORATION ACROSS CONTINENTS, UNIFYING GLOBAL OPINIONS TO REGULATORS AND INDUSTRY PARTNERS, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES, AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2023 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORGDesc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$351,618ExpenseAmt
DescAWARENESS, EDUCATION, AND OUTREACH PROGRAMSAWARENESS: FRIEDREICH ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO ADVOCACY AND RAISING AWARENESS FOR FA. FARA HAS UTILIZED BOTH TRADITIONAL AND SOCIAL MEDIA STRATEGIES TO BRING GREATER AWARENESS TO FA IN THE GENERAL PUBLIC AND TO ENGAGE AND EDUCATE THE FA COMMUNITY. FOR EXAMPLE, FARA CONDUCTS AN ANNUAL A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGES COMMUNITY PARTICIPATION LEADING UP TO FA AWARENESS DAY. ADVOCACY: FARA AND THE NATIONAL ATAXIA FOUNDATION (NAF) PARTNERED ON SEVERAL ADVOCACY INITIATIVES RELEVANT TO THE ATAXIA COMMUNITY. MOST NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN HEREDITARY ATAXIA BEING ADDED TO THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 23, RESULTING IN SEVEN FA RESEARCHERS BEING RECOMMENDED FOR FUNDING TOTALING OVER $10 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2023 NATIONAL ATAXIA AWARENESS DAY (S.RES 807) AND HOSTING THE FIFTH UNITED AGAINST ATAXIA HILL DAY- WITH 86 CONGRESSIONAL MEETINGS FEATURING THE PARTICIPATION OF 64 FARA AND NAF ADVOCATES FROM 33 STATES. ELEVATING THE FA VOICE: INDIVIDUALS AND FAMILIES LIVING WITH FA PROVIDE EXPERT INSIGHTS NECESSARY TO ADVANCE MEANINGFUL AND ACCESSIBLE TREATMENTS. THIS PAST YEAR, MEMBERS OF THE FA COMMUNITY ADVOCATED FOR FAIR COVERAGE OF SKYCLARYS AT 5 STATE MEDICAID MEETINGS. INDIVIDUALS WITH FA AND CAREGIVERS ALSO PROVIDED GUIDANCE FOR THE DESIGN OF A PATIENT PREFERENCE STUDY, WHICH WILL INVESTIGATE THE FA COMMUNITY'S ATTITUDES TOWARDS THE RISKS AND BENEFITS OF GENE THERAPY. ENGAGING WITH STAKEHOLDERS: THROUGH THE SHARING OF LIVED EXPERIENCES, MEMBERS OF THE FA COMMUNITY RAISED AWARENESS OF FA AND PROVIDED FEEDBACK TO DIFFERENT STAKEHOLDERS INCLUDING RESEARCHERS, PHARMACEUTICAL PARTNERS, AND GENETIC COUNSELING STUDENTS, AT 17 DIFFERENT EVENTS. SEVERAL PHARMACEUTICAL PARTNERS WORKING ON FA TREATMENTS COMMUNICATED DIRECTLY WITH THE FA COMMUNITY AT WEBINARS AND RESEARCH RECEPTIONS THROUGHOUT THE YEAR. CULTIVATING COMMUNITY: IN 2023 FARA STROVE TO SUPPORT THE FA COMMUNITY BY PROVIDING AVENUES FOR CONNECTION AND COLLABORATION. THE FARA AMBASSADOR PROGRAM, A GROUP OF ADULTS WITH FA WHO VOLUNTEER TO SUPPORT FARA'S MISSION, GREW TO 82 MEMBERS FROM COUNTRIES AROUND THE WORLD. AMBASSADORS NOW REPRESENT 12 COUNTRIES GLOBALLY. PLUS 32 STATES THROUGHOUT THE US.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$296,502ExpenseAmt
DescWORKSHOPS, SYMPOSIA, & CONFERENCESEDUCATION: FARA HOSTED 5 RESEARCH RECEPTIONS AND SYMPOSIUMS TO SHARE INFORMATION ABOUT THE FA RESEARCH PIPELINE, CURRENT CLINICAL TRIALS, CLINICAL MANAGEMENT OF FA, MENTAL WELLNESS, AND MORE. OVER 500 COMMUNITY MEMBERS ATTENDED THESE EVENTS TO LEARN AND CONNECT WITH EACH OTHER. VIRTUAL EDUCATION SESSIONS, INCLUDING FLASH TALKS, WEBINARS, AND 2 MINUTE MECHANISM VIDEOS, WERE ALSO SHARED THROUGHOUT THE YEAR.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$296,502TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$11,573,451TotalProgramServiceExpensesAmt
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 Equipment0ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other LiabilitiesYes (1)ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt0IndependentAuditFinclStmtInd
Consolidated Audit Fincl StmtYes (1)ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign OfficeYes (1)ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
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 EntityYes (1)RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document9IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee17EmployeeCnt
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 Members18GoverningBodyVotingMembersCnt
Independent Voting Member16IndependentVotingMemberCnt
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 Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process 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 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 FldMSStatesWhereCopyOfReturnIsFldCd
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
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

FieldValueIRS element (for citing)
Business Name Line1JENNIFER FARMERBusinessNameLine1Txt
FieldValueIRS element (for citing)
Phone4848796160PhoneNum

US Address USAddress

FieldValueIRS element (for citing)
Address Line1533 W UWCHLAN AVENUEAddressLine1Txt
CityDOWNINGTOWNCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19335ZIPCd

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
RONALD BARTEK
PRESIDENT/DIRECTOR40.00Yes (X)Yes (X)$114,377$0$4,006
RUTH ACTON
TREASURER/DIRECTOR FINANCE ADMIN & HR25.00Yes (X)Yes (X)$47,463$0$13,735
MARILYN E DOWNING
SECRETARY/ DIRECTOR10.00Yes (X)Yes (X)$0$0$0
DR SANJAY BIDICHANDANI
DIRECTOR10.00Yes (X)$0$0$0
BRIGID BRENNAN
DIRECTOR/ GENERAL COUNSEL20.00Yes (X)$0$0$0
THOMAS BRENNINKMEIJER
DIRECTOR10.00Yes (X)$0$0$0
ALEX FIELDING
DIRECTOR10.00Yes (X)$0$0$0
JENNIFER GOOD
DIRECTOR10.00Yes (X)$0$0$0
THOMAS HAMILTON
DIRECTOR10.00Yes (X)$0$0$0
DR HOLLY HEDRICK
DIRECTOR10.00Yes (X)$0$0$0
DEREK G HENNECKE
DIRECTOR10.00Yes (X)$0$0$0
DR STEVE KLASKO
DIRECTOR10.00Yes (X)$0$0$0
DR KATHY MATHEWS
DIRECTOR10.00Yes (X)$0$0$0
DR JAMES MCARTHUR
DIRECTOR10.00Yes (X)$0$0$0
TONY PLOHOROS
DIRECTOR10.00Yes (X)$0$0$0
PATRICK RITSCHEL
DIRECTOR10.00Yes (X)$0$0$0
DR JAMES R RUSCHE
DIRECTOR10.00Yes (X)$0$0$0
PAUL AVERY
CHAIRMAN/ DIRECTOR10.00Yes (X)Yes (X)$0$0$0
JENNIFER M FARMER
CHIEF EXECUTIVE OFFICER40.00Yes (X)$167,825$0$5,834
BARBARA A TATE
CHIEF SCIENTIFIC OFFICER40.00$250,000$0$7,799Yes (X)
ELISABETTA SORAGNI
DIRECTOR OF RESEARCH40.00$111,935$0$15,538Yes (X)
FELICIA DEROSA
VP FUNDRAISING & COMMS40.00$102,261$0$11,840Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$793,861TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$58,752TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K5IndivRcvdGreaterThan100KCnt
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 Line1CAMENE BVBA-MYRIAM ABOUAZAR-RAIBusinessNameLine1Txt

Contractor Address ContractorAddress

Foreign Address ForeignAddress

FieldValueIRS element (for citing)
Address Line1BRUSSELBAAN 473AddressLine1Txt
CitySINTPIETERSLEEUWCityNm
Province Or StateFLEMISH BRABANTProvinceOrStateNm
CountryBECountryCd
Foreign Postal1600ForeignPostalCd
FieldValueIRS element (for citing)
ServicesINTERNATIONAL RESEARCH AND ADVOCACY CONSServicesDesc
Compensation$113,339CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Federated Campaigns$9,229FederatedCampaignsAmt
Fundraising$3,818,252FundraisingAmt
All Other Contributions$8,183,597AllOtherContributionsAmt
Noncash Contributions$284,818NoncashContributionsAmt
Total Contributions$12,011,078TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$130,614TotalRevenueColumnAmt
Exclusion$130,614ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$998,025SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$1,093,008SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities-$94,983SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$94,983TotalRevenueColumnAmt
Exclusion-$94,983ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$421,463FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$3,818,252ContriRptFundraisingEventAmt
Fundraising Direct Expenses$1,265,129FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$843,666TotalRevenueColumnAmt
Exclusion-$843,666ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$11,203,043TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion-$808,035ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$7,001,397TotalAmt
Program Services$7,001,397ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$53,400TotalAmt
Program Services$53,400ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$2,252,280TotalAmt
Program Services$2,252,280ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$291,732TotalAmt
Program Services$218,799ProgramServicesAmt
Management And General$23,262ManagementAndGeneralAmt
Fundraising$49,671FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$969,778TotalAmt
Program Services$715,459ProgramServicesAmt
Management And General$161,406ManagementAndGeneralAmt
Fundraising$92,913FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$23,031TotalAmt
Program Services$17,016ProgramServicesAmt
Management And General$3,947ManagementAndGeneralAmt
Fundraising$2,068FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$88,543TotalAmt
Program Services$64,940ProgramServicesAmt
Management And General$12,967ManagementAndGeneralAmt
Fundraising$10,636FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$88,393TotalAmt
Program Services$64,810ProgramServicesAmt
Management And General$12,856ManagementAndGeneralAmt
Fundraising$10,727FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$27,406TotalAmt
Management And General$27,406ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$12,550TotalAmt
Program Services$12,550ProgramServicesAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$707,623TotalAmt
Program Services$669,227ProgramServicesAmt
Management And General$1,197ManagementAndGeneralAmt
Fundraising$37,199FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$22,849TotalAmt
Program Services$2,790ProgramServicesAmt
Management And General$4,399ManagementAndGeneralAmt
Fundraising$15,660FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$50,250TotalAmt
Program Services$34,007ProgramServicesAmt
Management And General$8,882ManagementAndGeneralAmt
Fundraising$7,361FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$209,747TotalAmt
Program Services$161,103ProgramServicesAmt
Management And General$47,476ManagementAndGeneralAmt
Fundraising$1,168FundraisingAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$13,993TotalAmt
Management And General$2,737ManagementAndGeneralAmt
Fundraising$11,256FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
SUBSCRIPTIONS & LICENSI$320,095$290,829$12,683$16,583
CREDIT CARD & BANK FEES$23,026$210$22,816
PRINTING AND COPYING$13,846$5,995$534$7,317
POSTAGE SERVICES$10,865$2,621$1,350$6,894

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$19,969TotalAmt
Program Services$6,018ProgramServicesAmt
Management And General$8,685ManagementAndGeneralAmt
Fundraising$5,266FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$12,200,773TotalAmt
Program Services$11,573,451ProgramServicesAmt
Management And General$329,787ManagementAndGeneralAmt
Fundraising$297,535FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$3,002,584BOYAmt
EOY$3,076,159EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$1,961,536BOYAmt
EOY$1,880,952EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$369,612BOYAmt
EOY$766,590EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$52,398BOYAmt
EOY$49,155EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$1,728,750BOYAmt
EOY$1,870,166EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$5,458BOYAmt
EOY$5,458EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$140,436BOYAmt
EOY$103,796EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$7,260,774BOYAmt
EOY$7,752,276EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$276,962BOYAmt
EOY$1,489,034EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$11,490BOYAmt
EOY$4,567EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$141,897BOYAmt
EOY$112,047EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$430,349BOYAmt
EOY$1,605,648EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$5,146,272BOYAmt
EOY$5,182,849EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,684,153BOYAmt
EOY$963,779EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$6,830,425BOYAmt
EOY$6,146,628EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$7,260,774BOYAmt
EOY$7,752,276EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss-$997,730ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst$231,231NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets$82,702OtherChangesInNetAssetsAmt
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)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
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$7,146,206CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$12,628,384CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,808,772CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$11,604,349CurrentTaxYearMinus1YearAmt
Current Tax Year$12,011,078CurrentTaxYearAmt
Total$51,198,789TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,146,206CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$12,628,384CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,808,772CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$11,604,349CurrentTaxYearMinus1YearAmt
Current Tax Year$12,011,078CurrentTaxYearAmt
Total$51,198,789TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$12,667,220SubstantialContributorsTotAmt
Public Support Total170$38,531,569PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$45,345CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$38,997CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$47,170CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$65,540CurrentTaxYearMinus1YearAmt
Current Tax Year$130,614CurrentTaxYearAmt
Total$327,666TotalAmt
FieldValueIRS element (for citing)
Total Support$51,526,455TotalSupportAmt
Public Support CY1700.74780PublicSupportCY170Pct
Public Support PY1700.80080PublicSupportPY170Pct
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$3,700FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$16,700FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$20,400FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$12,126,385FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$12,146,785FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$757,339FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$189,335FilingOrganizationsTotalAmt

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 Minus3$564,107CurrentYearMinus3Amt
Current Year Minus2$629,867CurrentYearMinus2Amt
Current Year Minus1$742,201CurrentYearMinus1Amt
Current Year$757,339CurrentYearAmt
Total$2,693,514TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$4,040,271LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$9,997CurrentYearMinus3Amt
Current Year Minus2$19,687CurrentYearMinus2Amt
Current Year Minus1$20,584CurrentYearMinus1Amt
Current Year$20,400CurrentYearAmt
Total$70,668TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$141,027CurrentYearMinus3Amt
Current Year Minus2$157,467CurrentYearMinus2Amt
Current Year Minus1$185,550CurrentYearMinus1Amt
Current Year$189,335CurrentYearAmt
Total$673,379TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$1,010,069GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$5,966CurrentYearMinus3Amt
Current Year Minus2$3,570CurrentYearMinus2Amt
Current Year Minus1$3,567CurrentYearMinus1Amt
Current Year$3,700CurrentYearAmt
Total$16,803TotalAmt

Schedule D IRS990ScheduleD

FieldValueIRS element (for citing)
Total Book Value Land Buildings$0TotalBookValueLandBuildingsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDescAmtAmt
LEASE LIABILITIES, CURRENT PORTION$68,826
LONG-TERM LEASE LIABILITIES$43,221
FieldValueIRS element (for citing)
Total Liability$112,047TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART X, LINE 2:FormAndLineReferenceDesc
ExplanationTHE INTERNAL REVENUE SERVICE HAS CLASSIFIED FARA AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. FARA EUROPE WAS FORMED AS A NON-PROFIT ENTITY UNDER THE LAWS OF THE NETHERLANDS AND IS EXEMPT FROM INCOME TAXES. ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES RECOGNIZED IN AN ENTERPRISE'S FINANCIAL STATEMENTS. MANAGEMENT HAS ANALYZED THE TAX POSITIONS TAKEN BY THE ORGANIZATION, AND HAS CONCLUDED THAT AS OF DECEMBER 31, 2023, THERE ARE NO UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN THAT WOULD REQUIRE RECOGNITION OF A LIABILITY OR DISCLOSURE IN THE FINANCIAL STATEMENTS. THE ORGANIZATION RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR THE YEAR ENDED DECEMBER 31, 2023.ExplanationTxt

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
EUROPE01GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$1,347,010
EAST ASIA AND THE PACIFIC00GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$438,345
SOUTH AMERICA00GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$108,500
CANADA00GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$358,425
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees1SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee1TotalEmployeeCnt
Subtotal Spent$2,252,280SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$2,252,280TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (18 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtNon Cash AssistanceNonCashAssistanceAmt
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$69,667WIRE$0
EUROPEMEDICAL RESEARCH$71,370WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$178,059WIRE$0
EUROPEMEDICAL RESEARCH$60,000WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$119,719WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$5,600WIRE$0
EUROPEMEDICAL RESEARCH$86,621WIRE$0
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES)MEDICAL RESEARCH$7,700WIRE$0
EUROPEMEDICAL RESEARCH$279,400WIRE$0
EUROPEMEDICAL RESEARCH$186,027WIRE$0
EUROPEMEDICAL RESEARCH$85,000WIRE$0
EUROPEMEDICAL RESEARCH$141,981WIRE$0
EUROPEMEDICAL RESEARCH$111,611WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$65,300WIRE$0
SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR,MEDICAL RESEARCH$73,500WIRE$0
SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR,MEDICAL RESEARCH$35,000WIRE$0
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES)MEDICAL RESEARCH$350,725WIRE$0
EUROPEMEDICAL RESEARCH$325,000WIRE$0
FieldValueIRS element (for citing)
Total501c3 Org18Total501c3OrgCnt
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 I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS.ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1FARA ENERGY BALLEvent1Nm
Gross Receipts Event1$1,904,209GrossReceiptsEvent1Amt
Charitable Contri Event1$1,700,053CharitableContriEvent1Amt
Gross Revenue Event1$204,156GrossRevenueEvent1Amt
Rent Facility Costs Event1$142,769RentFacilityCostsEvent1Amt
Entertainment Event1$10,500EntertainmentEvent1Amt
Other Direct Expenses Event1$451,853OtherDirectExpensesEvent1Amt
Event2RIDEATAXIA PHILAEvent2Nm
Gross Receipts Event2$551,805GrossReceiptsEvent2Amt
Charitable Contri Event2$535,210CharitableContriEvent2Amt
Gross Revenue Event2$16,595GrossRevenueEvent2Amt
Rent Facility Costs Event2$20,649RentFacilityCostsEvent2Amt
Other Direct Expenses Event2$91,877OtherDirectExpensesEvent2Amt
Other Events Total16OtherEventsTotalCnt
Gross Receipts Other Events$1,783,701GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$1,582,989CharitableContriOtherEventsAmt
Gross Revenue Other Events$200,712GrossRevenueOtherEventsAmt
Rent Fclty Costs Other Events$83,274RentFcltyCostsOtherEventsAmt
Entertainment Other Events$7,545EntertainmentOtherEventsAmt
Oth Direct Expnss Other Events$456,662OthDirectExpnssOtherEventsAmt
Gross Receipts Total$4,239,715GrossReceiptsTotalAmt
Charitable Contributions Tot$3,818,252CharitableContributionsTotAmt
Gross Revenue Total Events$421,463GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$246,692RentFcltyCostsTotalEventsAmt
Entertainment Total Events$18,045EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$1,000,392OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$1,265,129DirectExpenseSummaryEventsAmt
Net Income Summary-$843,666NetIncomeSummaryAmt
FieldValueIRS element (for citing)
Individual With BooksFELICIA DEROSAIndividualWithBooksNm

Persons With Books US Address PersonsWithBooksUSAddress

FieldValueIRS element (for citing)
Address Line1533 W UWCHLAN AVENUEAddressLine1Txt
CityDOWNINGTOWNCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19335ZIPCd

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (24 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
CHILDREN'S HOSPITAL OF PHILADELPHIA
34TH ST CIVIC CENTER BLVDPHILADELPHIAPA19104231352166501(C)(3)$1,117,453$0MEDICAL RESEARCH
CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION
34TH ST CIVIC CENTER BLVDPHILADELPHIAPA19104232237932501(C)(3)$500,000$0MEDICAL RESEARCH
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES
10920 WILSHIRE BLVD 5TH FLOORLOS ANGELESCA90024956006143501(C)(3)$22,000$0MEDICAL RESEARCH
UNIVERSITY OF FLORIDA
DEPT OF NEUROLOGY L3-100 MCKNIGHTGAINESVILLEFL32611596002052501(C)(3)$554,216$0MEDICAL RESEARCHBRAIN INSTITUTE NEWELL DRIVE
UNIVERSITY OF IOWA DEPT OF PEDIATRICS
200 HAWKINS DRIVEIOWA CITYIA52242426004813501(C)(3)$8,400$0MEDICAL RESEARCH
UNIVERSITY OF ROCHESTER
515 HYLAN BUILDING RC BOX 270140ROCHESTERNY14627160743209501(C)(3)$235,144$0MEDICAL RESEARCH
TRUSTEES OF BOSTON COLLEGE
140 COMMONWEALTH AVECHESTNUT HILLMA02467042103545501(C)(3)$38,000$0MEDICAL RESEARCH
TRUSTREES OF THE UNIVERSITY OF PENNSYLVANIA
3451 WALNUT ST RM 310PHILADELPHIAPA19104231352685501(C)(3)$108,107$0MEDICAL RESEARCH
UPLIFTING ATHLETES INC
PO BOX 574 8 ATKINSON DRIVEDOYLESTOWNPA18901341986485501(C)(3)$10,000$0MEDICAL RESEARCH
WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
1300 YORK AVENUE C-118NEW YORKNY10065131623978501(C)(3)$250,000$0MEDICAL RESEARCH
UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER
FIVE PARTNERS PLACE STE 3100 201NORMANOK73019731377584501(C)(3)$116,733$0MEDICAL RESEARCHSTEPHENSON PKWY
STANFORD UNIVERSITY
2770 SAND HILL ROADMENLO PARKCA94025941156365501(C)(3)$225,000$0MEDICAL RESEARCH
THE BROAD INSTITUTE
415 MAIN STREETCAMBRIDGEMA02142263428781501(C)(3)$2,319,548$0MEDICAL RESEARCH
BURKE NEUROLOGICAL INSTITUTE
785 MAMARONECK AVENUEWHITE PLAINSNY10605133434924501(C)(3)$59,592$0MEDICAL RESEARCH
ST JUDE CHILDREN'S RESEARCH HOSPITAL
262 DANNY THOMAS PLACEMEMPHISTN38105620646012501(C)(3)$62,708$0MEDICAL RESEARCH
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DRIVELA JOLLACA92093956006144501(C)(3)$125,000$0MEDICAL RESEARCH
THE REGENTS OF THE UNIVERSITY OF MINNESOTA
200 SE OAK ST 600MINNEAPOLISMN55455416007513501(C)(3)$515,884$0MEDICAL RESEARCH
UNIVERSITY OF SOUTH FLORIDA BOARD OF TRUSTEES
4202 EAST FOWLER AVE SVC 1039TAMPAFL10000593102112501(C)(3)$10,000$0MEDICAL RESEARCH
UNIVERSITY OF SOUTH FLORIDA FOUNDATION
4202 EAST FOWLER AVETAMPAFL33620590879015501(C)(3)$105,009$0MEDICAL RESEARCH
THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK
154 HAVEN AVENUE SECOND FLOORNEW YORKNY10032135598093501(C)(3)$125,000$0MEDICAL RESEARCH
CALIFORNIA INSTITUTE OF TECHNOLOGY
1200 EAST CALIFORNIA BLVDPASADENACA91125951643307501(C)(3)$67,842$0MEDICAL RESEARCH
THE CURATORS OF THE UNIVERSITY OF MISSOURI
118 UNIVERSITY HALLCOLUMBIAMO65211436003859501(C)(3)$19,150$0MEDICAL RESEARCH
THE NATIONAL CANCER INSTITUTE(NIHNIC)
BUILDING 31 ROOM 22A-16 9000BETHESDAMD20892015208581501(C)(3)$125,000$0MEDICAL RESEARCHROCKVILLE PIKE
TRUSTEES OF THE INDIANA UNIVERSITY
509 EAST 3RD STBLOOMINGTONIN47401356001673501(C)(3)$272,187$0MEDICAL RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org24Total501c3OrgCnt
Total Other Org0TotalOtherOrgCnt

Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp

FieldValueIRS element (for citing)
Grant TypeFARA FELLOWS AWARDSGrantTypeTxt
Recipient4RecipientCnt
Cash Grant$53,400CashGrantAmt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
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 (2 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
BARBARA A TATE
CHIEF SCIENTIFIC OFFICER$250,000$0$0$0$0$0$6,950$0$849$0$257,799$0$0$0
JENNIFER M FARMER
CHIEF EXECUTIVE OFFICER$167,825$0$0$0$0$0$4,950$0$884$0$173,659$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution8ContributionCnt
Noncash Contributions Rpt F990$284,818NoncashContributionsRptF990Amt
Method Of Determining RevenuesHI-LOW DATE OF GIFTMethodOfDeterminingRevenuesTxt

Other Non Cash Contri Table OtherNonCashContriTableGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
DescAUCTION ITEMSDesc
Contribution213ContributionCnt
Noncash Contributions Rpt F990$552,454NoncashContributionsRptF990Amt
Method Of Determining RevenuesFAIR MARKET VALUEMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC GiftsYes (1)ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, COLUMN (B):FormAndLineReferenceDesc
ExplanationFOR LINE 9, THE ORGANIZATION RECOGNIZES IN COLUMN B EACH UNIQUE NON-CASH CONTRIBUTION RECEIVED FROM A DONOR. FOR LINE 25, THE COUNT OF AUCTION ITEMS REPRESENTS EACH INDIVIDUAL CONTRIBUTION OF TANGIBLE ITEMS BY A DONOR.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (7 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART III, LINE 4ARESEARCH AND GRANT PROGRAM FARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2023, FARA AWARDED $9 MILLION IN RESEARCH FUNDING. THIS INCLUDED 37 GRANT PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH, AND FARA DIRECTED PROJECTS. IT ALSO INCLUDED FUNDING A PATIENT REGISTRY AND LONGITUDINAL NATURAL HISTORY THROUGH THE FA GLOBAL CLINICAL CONSORTIUM WHICH IS DESCRIBED IN THE SECOND PROGRAM SECTION BELOW. FARA GRANT PROGRAM FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-TWO NEW GRANTS AND APPROVED CONTINUED FUNDING FOR FIFTEEN GRANTS. RESEARCHERS IN TEN COUNTRIES ARE RECEIVING RESEARCH FUNDING FROM FARA. THE PROGRAM IS A COMPETITIVE FUNDING MECHANISM THAT SUPPORTS RESEARCH TO FURTHER THE UNDERSTANDING OF FA AND PROMOTE THERAPEUTIC DISCOVERY AND DEVELOPMENT. FARA PRIORITIZES FUNDING PROJECTS THAT FILL GAPS IN KNOWLEDGE OF DISEASE MECHANISMS, SUPPORT EARLY DEVELOPMENT OF THERAPEUTIC INTERVENTIONS, ESTABLISH AND ADVANCE THE DEVELOPMENT OF TOOLS FOR DRUG DEVELOPERS AND ACADEMIC RESEARCHERS, AND FOCUS ON CLINICAL RESEARCH AND TRIALS. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH FARA'S FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. WITH FARA'S GOAL IN MIND OF INSPIRING AND SUPPORTING JUNIOR INVESTIGATORS AND BUILD THE NEXT GENERATIONS OF FA SCIENTISTS, IN 2023, FARA ESTABLISHED TWO NEW PROGRAMS: THE FARA GRADUATE RESEARCH FELLOWSHIP TO SUPPORT YOUNG RESEARCHER ENGAGED IN GRADUATE STUDY LEADING TO A PH.D. DEGREE AND THE FARA FELLOW PROGRAM THAT PROVIDES MENTORSHIP, TRAINING AND NETWORKING OPPORTUNITIES TO TALENTED YOUNG SCIENTISTS. THE FARA FELLOWS PROGRAM WAS INITIATED WITH SUPPORT FOR FOUR FELLOWS FROM STANFORD UNIVERSITY, COLUMBIA UNIVERSITY, CALTECH, AND UT SOUTHWESTERN. FARA HAS ALSO IDENTIFIED OPPORTUNITIES TO FUND RESEARCH AT INSTITUTIONS WHERE THERE ARE MULTIPLE INVESTIGATORS WITH AN EXPERTISE AND COMMITMENT TO FA RESEARCH AND/OR OPPORTUNITY TO LEVERAGE TECHNOLOGIES, INNOVATION OR NEW GROWTH TO THE FA COMMUNITY. BY ESTABLISHING THESE INSTITUTIONAL FUNDING PROGRAMS, FARA IS ABLE TO PROMOTE COLLABORATION AND SYNERGY ACROSS BASIC, TRANSLATIONAL AND CLINICAL RESEARCH, PROVIDE A LONGER-TERM COMMITMENT FOR RESEARCH, ATTRACT NEW INVESTIGATORS, AND LEVERAGE THE INSTITUTIONS RESOURCES AND ENGAGEMENT. FARA PROVIDES INSTITUTIONAL BASED RESEARCH SUPPORT FOR THE FA CENTER OF EXCELLENCE AT PENN MEDICINE/CHILDREN'S HOSPITAL OF PHILADELPHIA AND THE FA ACCELERATOR PROGRAM AT THE BROAD INSTITUTE. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PA THE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT TO PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA, PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES/ CUREFA FOUNDATION. PROJECTS AND INVESTIGATORS WITH CONTINUED FUNDING INCLUDED DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY, AND DR. CLEMINTINA MASAROS- LIPID AND METABOLIC PROFILING. THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. OVER THE PAST YEAR, THIS SYNERGY HAS RESULTED IN MEANINGFUL STRIDES FORWARD IN FA RESEARCH. FOR EXAMPLE, THE BASIC RESEARCH PROGRAMS HAVE PROVIDED INSIGHTS INTO CHANGES IN THE CEREBELLUM THAT SUGGEST A NOVEL THERAPEUTIC TARGET, A SPECIFIC TYPE OF GLUTAMATE RECEPTOR. WORK IN MODEL SYSTEMS HAS ALSO SUGGESTED THAT THE IMMUNE SYSTEM MAY PLAY A ROLE IN FA, PROVIDING AN ADDITIONAL AVENUE FOR THERAPEUTIC INTERVENTION. THE LABS AT CHOP HAVE DEVELOPED SENSITIVE AND SPECIFIC ASSAYS FOR FORMS OF FRATAXIN, AS WELL AS ASSAYS FOR METABOLITES THAT ARE ALTERED IN FA. THESE BIOMARKER ASSAYS ARE CRITICAL TO THERAPEUTIC DEVELOPMENT. FINALLY, THE CLINICIANS AT CHOP HAVE MADE MAJOR CONTRIBUTIONS TO THE CLINICAL CARE GUIDELINES FOR THE TREATMENT AND MANAGEMENT OF FA AND HAVE PARTICIPATED IN THE TESTING OF THERAPEUTICS IN CLINICAL TRIALS. AT THE END OF 2023, FOUR COE INVESTIGATORS WERE AWARDED APPROXIMATELY $7M IN EXTERNALLY-FUNDED GRANTS FROM THE DEPARTMENT OF DEFENSE'S CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS (CDMRP). THIS IS A GREAT EXAMPLE OF HOW THE FOUNDATIONAL WORK SUPPORTED BY FARA ATTRACTS SIGNIFICANT ADDITIONAL FUNDING TO CONTINUE TO ADVANCE THESE IMPORTANT FA PROGRAMS. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARD THE FRIEDREICH'S ATAXIA ACCELERATOR (FAA) AT THE BROAD INSTITUTE OF MIT AND HARVARD WAS ESTABLISHED IN AUGUST 2020. FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA, THE FAA IS A COLLABORATIVE, MULTI-DISCIPLINARY EFFORT AIMED AT GALVANIZING RESEARCH INTO FA AND SEEDING A GROWING COMMUNITY ACROSS BROAD, MIT, HARVARD AND AFFILIATED INSTITUTIONS COMMITTED TO TACKLING FA. IT IS LED BY VAMSI MOOTHA, MD, THE FAA INVESTIGATORS INCLUDE GARY RUVKIN, PHD, DAVID LIU, PHD, CHRISTINE SEIDMAN, MD, JONATHAN SEIDMAN, PHD, ANOOPUM GUPTA, MD AND ANTHONY PHILIPPAKIS, MD. THE WORK AT THE FAA HAS YIELDED INSIGHTS IN KEY RESEARCH AREAS FOR FA IN 2023. THE MOOTHA LAB HAS ADVANCED AN UNDERSTANDING OF THE INTERACTION OF FRATAXIN FUNCTION AND ENVIRONMENTAL STRESSORS, WHILE THE RUVKUN LAB HAS GENERATED PRELIMINARY DATA ON POTENTIAL MECHANISMS TO BYPASS FRATAXIN LOSS. THE LIU LAB, EXPERTS IN GENE EDITING APPROACHES, ARE OPTIMIZING THIS TECHNIQUE FOR REACTIVATING FRATAXIN EXPRESSION. FINALLY, THE SEIDMANS HAVE BROUGHT DEEP EXPERIENCE AND KNOWLEDGE OF CARDIOMYOPATHY AND HOW FA IS SIMILAR TO OTHER DISEASES AFFECTING THE HEART POTENTIALLY PROVIDING THE BASIS FOR THE USE OF EXISTING HEART MEDICATIONS FOR FA. FARA DIRECTED RESEARCH IN 2023, FARA FUNDED DIRECTED RESEARCH PROGRAMS INCLUDING: 1. MAINTAINING A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://LABS.UTSOUTHWESTERN.EDU/NAPIERALA-LAB 2. TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM ESTABLISHED IN 2020, A NATURAL HISTORY STUDY DESIGNED TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. PARTICIPATING CLINICAL SITES IN USA, BRAZIL, CANADA, GERMANY, AND AUSTRALIA COMPLETED ENROLLMENT IN 2023. THE STUDY ENROLLED 182 INDIVIDUALS WITH FA AND 97 MATCHED CONTROLS AND CONDUCTED NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS. DATA COLLECTION COMPLETION FOR THE STUDY IS ANTICIPATED BEFORE THE END OF 2025. 3. FOSTERING A COLLABORATIVE EFFORT BETWEEN RESEARCHERS AT UNIVERSITY OF OKLAHOMA, UNIVERSITY OF TEXAS SOUTHWESTERN, AND UNIVERSITY OF PENNSYLVANIA TO STUDY THE PRECISE MECHANISM OF THIS GENE SILENCING IN DIFFERENT TISSUES AND MODELS OVER TIME. 4. DEVELOPMENT AND VALIDATION OF A POTENCY ASSAY FOR USE IN THE DEVELOPMENT OF GENE AND PROTEIN REPLACEMENT THERAPIES. 5. THE AUSTRALIAN GENE AND CELL THERAPY CONSORTIUM 6. LEADING WORK TO CREATE A NEW DISEASE MODEL FOR PRE-CLINICAL RESEARCH, AN FA RAT MODEL. 7. IDENTIFYING AND FUNDING RESEARCH TO UNDERSTAND THE THERAPEUTIC WINDOW (MINIMAL AMOUNT OF FRATAXIN NEEDED FOR A THERAPEUTIC BENEFIT AND THRESHOLD FOR MAXIMUM AMOUNTS OR TOXIC AMOUNTS OF FRATAXIN IN THE CELL. 8. ONGOING MAINTENANCE OF CLINICAL MANAGEMENT GUIDELINES IN FA FOR REFERENCE USE BY PHYSICIANS AND PATIENTS (PUBLISHED IN 2022): FRDAGUIDELINES.ORG 9. RETROSPECTIVE CARDIAC NATURAL HISTORY STUDY-THIS PROJECT WILL RE-ANALYZE EXISTING ECHOCARDIOGRAMS TO QUICKLY ASSESS THE VALUE OF THESE DATA IN UNDERSTANDING AND PREDICTING THE PROGRESSION OF HEART DISEASE IN FA. OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA CAN PROVIDE INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. A COMPLETE LIST OF 2023 FARA FUNDED GRANTS AND PUBLICATIONS CAN BE FOUND AT: CUREFA.ORG
FORM 990, PART VI, SECTION B, LINE 11BCOPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING.
FORM 990, PART VI, SECTION B, LINE 12CALL NEW AND EXISTING BOARD MEMBERS ARE REQUIRED TO ANNUALLY REVIEW AND SIGN A CONFLICT OF INTEREST POLICY AND REPORT DISCLOSURES.
FORM 990, PART VI, SECTION B, LINE 15EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT, CEO, CSO AND DIRECTOR FINANCE ADMINISTRATION.
FORM 990, PART VI, SECTION C, LINE 19FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG FINANCIAL STATEMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FORM 1023 ARE AVAILABLE UPON REQUEST.
FORM 990, PART XI, LINE 9:PRIOR YEAR GRANT REFUNDS INCLUDED IN SUPPORT ON FINANCIAL STATEMENTS 82,702.
FORM 990, PART XII, LINE 2CFARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS AND 990 PRIOR TO SHARING WITH THE FULL BOARD FOR A VOTE. ALL 990 INFORMATION IS VERIFIED FOR ACCURACY AND COMPLETENESS BY FARA'S DIRECTOR OF FINANCE, FARA'S VP OF FUNDRAISING AND COMMUNICATIONS AND FARA'S CEO. THE VERIFIED DRAFT IS REVIEWED BY THE FARA FINANCE COMMITTEE AND SUBMITTED TO THE FULL FARA BOARD FOR REVIEW AND APPROVAL PRIOR TO FILING.

Schedule R IRS990ScheduleR

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1STICHTING FRIEDREICH'S ATAXIA RESEARCH ALLIANCE EUROPEBusinessNameLine1Txt

Foreign Address ForeignAddress

FieldValueIRS element (for citing)
Address Line1JACHTHAVENWEG 111AddressLine1Txt
CityKM AMSTERDAMCityNm
CountryNLCountryCd
FieldValueIRS element (for citing)
Primary ActivitiesRESEARCHPrimaryActivitiesTxt
Legal Domicile Foreign CountryNLLegalDomicileForeignCountryCd

Direct Controlling Entity Name DirectControllingEntityName

FieldValueIRS element (for citing)
Business Name Line1FRIEDREICH'S ATAXIA RESEARCH ALLIANCEBusinessNameLine1Txt
FieldValueIRS element (for citing)
Controlled Organization0ControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts Rylts0ReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth OrgYes (1)GiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth Org0GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other Org0LoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth Org0LoansOrGuaranteesFromOthOrgInd
Div Related Organization0DivRelatedOrganizationInd
Asset Sale To Other Org0AssetSaleToOtherOrgInd
Asset Purchase From Other Org0AssetPurchaseFromOtherOrgInd
Asset Exchange0AssetExchangeInd
Rental Of Facilities To Oth Org0RentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth Org0RentalOfFcltsFromOthOrgInd
Perform Of Services For Oth Org0PerformOfServicesForOthOrgInd
Perform Of Services By Other Org0PerformOfServicesByOtherOrgInd
Sharing Of Facilities0SharingOfFacilitiesInd
Paid Employees Sharing0PaidEmployeesSharingInd
Reimbursement Paid To Other Org0ReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other Org0ReimbursementPaidByOtherOrgInd
Transfer To Other Org0TransferToOtherOrgInd
Transfer From Other Org0TransferFromOtherOrgInd