FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-10-16
- IRS object ID
- 202542899349301714
- Schema version
- 2024v5.2
- 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
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2025-10-16T15:35:31-05:00 | ReturnTs |
| Tax Period End | 2024-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 871353108 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | EISNER ADVISORY GROUP LLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 130 NORTH 18TH STREET SUITE 3000 | AddressLine1Txt |
| City | PHILADELPHIA | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 191032757 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2024-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 522122720 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FRIEDREICH'S ATAXIA RESEARCH ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FRIE | BusinessNameControlTxt |
| Phone | 4848796160 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 1537 | AddressLine1Txt |
| City | SPRINGFIELD | CityNm |
| State Abbreviation | VA | StateAbbreviationCd |
| ZIP | 22151 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JENNIFER FARMER | PersonNm |
| Person Title | CHIEF EXECUTIVE OFFICER | PersonTitleTxt |
| Phone | 4848796160 | PhoneNum |
| Signature | 2025-10-15 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | 0 | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | HELEN M MARTIN | PreparerPersonNm |
| PTIN | P01330899 | PTIN |
| Phone | 2158818800 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | JENNIFER FARMER | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1Txt |
| City | DOWNINGTOWN | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19335 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $14,956,926 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CUREFA.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1998 | FormationYr |
| Legal Domicile State | VA | LegalDomicileStateCd |
| Activity Or Mission | TO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. | ActivityOrMissionDesc |
| Voting Members Governing Body | 19 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 17 | VotingMembersIndependentCnt |
| Total Employee | 19 | TotalEmployeeCnt |
| Total Volunteers | 500 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $12,011,078 | PYContributionsGrantsAmt |
| CY Contributions Grants | $13,517,065 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $35,631 | PYInvestmentIncomeAmt |
| CY Investment Income | $172,331 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$843,666 | PYOtherRevenueAmt |
| CY Other Revenue | -$553,970 | CYOtherRevenueAmt |
| PY Total Revenue | $11,203,043 | PYTotalRevenueAmt |
| CY Total Revenue | $13,135,426 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $9,307,077 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $10,467,810 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,461,477 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,572,657 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $368,460 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $1,432,219 | PYOtherExpensesAmt |
| CY Other Expenses | $1,236,769 | CYOtherExpensesAmt |
| PY Total Expenses | $12,200,773 | PYTotalExpensesAmt |
| CY Total Expenses | $13,277,236 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$997,730 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$141,810 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $7,752,276 | TotalAssetsBOYAmt |
| Total Assets EOY | $6,946,549 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $1,605,648 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $676,182 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $6,146,628 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $6,270,367 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | TO 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 Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $10,330,478 | ExpenseAmt |
| Grant | $9,606,747 | GrantAmt |
| Desc | RESEARCH AND GRANT PROGRAM - SEE SCHEDULE O | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,354,745 | ExpenseAmt |
| Grant | $781,063 | GrantAmt |
| Desc | CLINICAL 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 (CONTINUED IN SCHEDULE O)CLINICAL RESEARCH INFRASTRUCTURE (CONT'D):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. OVER THE LAST TWO YEARS, 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. QUARTERLY FULL GROUP MEETINGS SERVE AS A PLATFORM FOR INVESTIGATORS TO ESTABLISH COMMON RESEARCH INTERESTS, FORM COLLABORATIONS, AND SHARE THEIR GLOBAL EXPERIENCES WITH OMAVELOXOLONE. 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 2024 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $491,179 | ExpenseAmt |
| Grant | $80,000 | GrantAmt |
| Desc | AWARENESS, EDUCATION, AND OUTREACH PROGRAMS:AWARENESS: 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. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN THE CONTINUED INCLUSION OF HEREDITARY ATAXIA AS PART OF (CONTINUED IN SCHEDULE O)ADVOCACY: (CONT'D)THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 24, RESULTING IN FOUR HEREDITARY ATAXIA RESEARCH GRANTS BEING RECOMMENDED FOR FUNDING TOTALING OVER $12 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2024 NATIONAL ATAXIA AWARENESS DAY AND HOSTING THE SIXTH UNITED AGAINST ATAXIA HILL DAY- WITH 94 CONGRESSIONAL MEETINGS FEATURING THE PARTICIPATION OF 113 FARA AND NAF ADVOCATES FROM 32 STATES. EDUCATION: IN AN ONGOING EFFORT TO SHARE INFORMATION AND EDUCATION, FARA LAUNCHED A NEW WEBSITE IN 2024. THE SITE REDESIGN PRIORITIZED THE USER EXPERIENCE FOR KEY STAKEHOLDERS INCLUDING PATIENT FAMILIES, RESEARCHERS, AND DONORS. THE NEW SITE COINTAINS UP-TO-DATE INFORMATION ON FA RESEARCH INCLUDING GRANTS FUNDED BY FARA, TREATMENT APPROACHES AND PROGRAMS IN THE DRUG DEVELOPMENT PIPELINE, RESEARCH RESOURCES, AND CLINICAL TRIAL OPPORTUNITIES. IT ALSO OFFERS GUIDANCE FOR FAMILIES NAVIGATING FA AND OPPORTUNITIES TO CONNECT WITH OTHERS AND GET INVOLVED.ENGAGING WITH STAKEHOLDERS: AS EXPERTS IN LIVING WITH FA, INDIVIDUALS AND FAMILIES SHARED THEIR STORIES IN MANY FORUMS AND TO MANY AUDIENCES. IN 2024, OVER 50 INDIVIDUALS FROM THE FA COMMUNITY WORKED WITH FARA TO ENGAGE WITH PHARMACEUTICAL PARTNERS, RESEARCHERS, FUTURE HEALTHCARE PROFESSIONALS, MEDICAID COMMITTEES, AND THE FOOD AND DRUG ADMINISTRATION AT 33 DIFFERENT EVENTS. THEIR VOICES PROVIDE ESSENTIAL INSIGHTS THAT ADVANCE MEANINGFUL AND ACCESSIBLE TREATMENTS. CULTIVATING COMMUNITY: THROUGHOUT 2024, FARA WORKED TO STRENGTHEN THE FA COMMUNITY BY FACILITATING OPPORTUNITIES FOR CONNECTION AND COLLABORATION THROUGH VIRTUAL AND IN-PERSON EVENTS. INDIVIDUALS NEW TO THE FA COMMUNITY HAD THE OPPORTUNITY TO MEET OTHER FA FAMILIES FOR THE FIRST TIME. THE FARA AMBASSADOR PROGRAM, A GROUP OF ADULTS WITH FA WHO VOLUNTEER TO SUPPORT FARA'S MISSION, GREW TO 100 MEMBERS FROM COUNTRIES AROUND THE WORLD. AMBASSADORS NOW REPRESENT 14 COUNTRIES GLOBALLY PLUS 32 STATES THROUGHOUT THE US.TO HELP FURTHER FARA'S AWARENESS AND OUTREACH INITIATIVES, FARA ALSO FUNDED A GRANT FOR THE CREATION OF A DOCUMENTARY FILM ABOUT HOW THE FA COMMUNITY UNITES TO ADVANCE RESEARCH. THE FILM, UNDER THE WORKING TILE "THE HIGHEST ROAD," FOCUSES ON THE FA COMMUNITY'S ROLE IN HELPING TO GET THE FIRST DRUG APPROVED FOR FA A STORY THAT IS TOLD IN PARALLEL WITH COMMUNITY MEMBERS ATTEMPTING TO CYCLE UP THE HIGHEST PAVED ROAD IN INDIA. THE FILM IS CURRENTLY IS POST PRODUCTION WITH THE AIM TO BE SHOWN IN FILM FESTIVALS IN 2026. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $357,617 | ExpenseAmt |
| Desc | WORKSHOPS, SYMPOSIA, & CONFERENCESINTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN NOVEMBER 2024, THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) BROUGHT TOGETHER OVER 600 RESEARCHERS FROM AROUND THE WORLD. IT WAS THE LARGEST ICAR TO DATE AND A POWERFUL EXAMPLE OF HOW WE ACCELERATE PROGRESS WHEN EXPERTS ACROSS DIFFERENT TYPES OF ATAXIA COME TOGETHER TO SHARE IDEAS AND COLLABORATE. FARA WAS HONORED TO CO-HOST THE MEETING ALONG WITH ATAXIA UK, NATIONAL ATAXIA FOUNDATION, AND THE ATAXIA GLOBAL INITIATIVE.THIS YEAR'S PROGRAM INCLUDED A MIX OF PLENARY SESSIONS, BREAKOUT WORKSHOPS, AND SCIENTIFIC DEBATE. THE DEBATE SPARKED THOUGHTFUL DISCUSSION ABOUT THE STRENGTHS OF IN VIVO VS. IN VITRO RESEARCH MODELS AND HIGHLIGHTED HOW BOTH APPROACHES HELP TO MOVE THE SCIENCE FORWARD.SOME INSIGHTS AND LEARNINGS FROM ICAR 2024 INCLUDED: 1. DISCOVERING THAT FRATAXIN ACTIVITY CAN BE BOOSTED BY TARGETING OTHER COMPONENTS OF THE IRON-SULFUR CLUSTER ASSEMBLY REVEALS A POTENTIAL NEW TREATMENT PATHWAY. 2. SOME GAA REPEAT INTERRUPTIONS ARE MORE COMMON THAN PREVIOUSLY KNOWN, IMPACTING CARRIER DETECTION AND OPENING NEW THERAPEUTIC OPPORTUNITIES. 3. INFLAMMATION MIGHT CONTRIBUTE TO NERVE DAMAGE IN FA. 4.CAPSID FOR AN IV GENE ADDITION THERAPY REACHED KEY BRAIN AND HEART AREAS IN ANIMAL MODELS 5. MULTIPLE THERAPIES ACROSS DIFFERENT MECHANISMS OF ACTION ARE SHOWING EARLY PROMISE.FARA ALSO HOSTED FIVE RESEARCH RECEPTIONS AND SYMPOSIUMS TO SHARE INFORMATION ABOUT THE FA DRUG DEVELOPMENT PIPELINE, ONGOING CLINICAL TRIALS, CLINICAL MANAGEMENT, AND FARA RESOURCES. VIRTUAL EDUCATION SESSIONS INCLUDED FLASH TALKS WITH FARA-FUNDED RESEARCHERS, COMMUNITY CONVERSATION WEBINARS WITH FARA LEADERSHIP, AND INFORMATION SESSIONS WITH PHARMACEUTICAL PARTNERS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $357,617 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $12,534,019 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | 0 | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | Yes (1) | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | Yes (1) | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | Yes (1) | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (1) | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 19 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 19 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 19 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 17 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AZ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ND | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | JENNIFER FARMER | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 4848796160 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1Txt |
| City | DOWNINGTOWN | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19335 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (23 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|
| RONALD BARTEK | |||||||
| PRESIDENT/DIRECTOR | 40.00 | Yes (X) | Yes (X) | $110,000 | $0 | $3,811 | |
| RUTH ACTON | |||||||
| TREASURER/DIRECTOR FINANCE | 25.00 | Yes (X) | Yes (X) | $51,000 | $0 | $16,964 | |
| PAUL AVERY | |||||||
| CHAIRMAN/ DIRECTOR | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| MAUREEN JUIP | |||||||
| SECRETARY/ DIRECTOR | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| DR SANJAY BIDICHANDANI | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| BRIGID BRENNAN | |||||||
| DIRECTOR/ GENERAL COUNSEL | 20.00 | Yes (X) | $0 | $0 | $0 | ||
| THOMAS BRENNINKMEIJER | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| ALEX FIELDING | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| JENNIFER GOOD | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| THOMAS HAMILTON | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| DR HOLLY HEDRICK | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| DEREK G HENNECKE | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| WARREN HUFF | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| DR STEVE KLASKO | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| DR KATHY MATHEWS | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| DR JAMES MCARTHUR | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| TONY PLOHOROS | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| PATRICK RITSCHEL | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| DR JAMES R RUSCHE | |||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | ||
| JENNIFER M FARMER | |||||||
| CHIEF EXECUTIVE OFFICER | 40.00 | Yes (X) | $165,000 | $0 | $5,678 | ||
| BARBARA A TATE | |||||||
| CHIEF SCIENTIFIC OFFICER | 40.00 | $250,000 | $0 | $5,527 | Yes (X) | ||
| ELISABETTA SORAGNI | |||||||
| DIRECTOR OF RESEARCH | 40.00 | $115,851 | $0 | $16,023 | Yes (X) | ||
| FELICIA DEROSA | |||||||
| VP FUNDRAISING & COMMS | 40.00 | $106,351 | $0 | $12,292 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $798,202 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $60,295 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 5 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp
Contractor Name ContractorName
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | CAMENE BVBA-MYRIAM ABOUAZAR-RAI | BusinessNameLine1Txt |
Contractor Address ContractorAddress
Foreign Address ForeignAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | BRUSSELBAAN 473 | AddressLine1Txt |
| City | SINTPIETERSLEEUW | CityNm |
| Province Or State | FLEMISH BRABANT | ProvinceOrStateNm |
| Country | BE | CountryCd |
| Foreign Postal | 1600 | ForeignPostalCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Services | INTERNATIONAL RESEARCH AND ADVOCACY CONS | ServicesDesc |
| Compensation | $132,135 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $7,072 | FederatedCampaignsAmt |
| Fundraising | $3,362,180 | FundraisingAmt |
| All Other Contributions | $10,147,813 | AllOtherContributionsAmt |
| Noncash Contributions | $881,511 | NoncashContributionsAmt |
| Total Contributions | $13,517,065 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $145,621 | TotalRevenueColumnAmt |
| Exclusion | $145,621 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $645,455 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $618,745 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $26,710 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $26,710 | TotalRevenueColumnAmt |
| Exclusion | $26,710 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $648,785 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $3,362,180 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $1,202,755 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$553,970 | TotalRevenueColumnAmt |
| Exclusion | -$553,970 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $13,135,426 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$381,639 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,117,301 | TotalAmt |
| Program Services | $7,117,301 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,350 | TotalAmt |
| Program Services | $13,350 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,337,159 | TotalAmt |
| Program Services | $3,337,159 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $352,453 | TotalAmt |
| Program Services | $235,494 | ProgramServicesAmt |
| Management And General | $77,129 | ManagementAndGeneralAmt |
| Fundraising | $39,830 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,005,136 | TotalAmt |
| Program Services | $743,605 | ProgramServicesAmt |
| Management And General | $145,566 | ManagementAndGeneralAmt |
| Fundraising | $115,965 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,699 | TotalAmt |
| Program Services | $17,493 | ProgramServicesAmt |
| Management And General | $3,331 | ManagementAndGeneralAmt |
| Fundraising | $1,875 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $94,846 | TotalAmt |
| Program Services | $79,156 | ProgramServicesAmt |
| Management And General | $5,460 | ManagementAndGeneralAmt |
| Fundraising | $10,230 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $97,523 | TotalAmt |
| Program Services | $72,766 | ProgramServicesAmt |
| Management And General | $15,658 | ManagementAndGeneralAmt |
| Fundraising | $9,099 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $28,777 | TotalAmt |
| Management And General | $28,777 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,550 | TotalAmt |
| Program Services | $7,550 | ProgramServicesAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $487,223 | TotalAmt |
| Program Services | $383,230 | ProgramServicesAmt |
| Management And General | $10,373 | ManagementAndGeneralAmt |
| Fundraising | $93,620 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,786 | TotalAmt |
| Program Services | $1,995 | ProgramServicesAmt |
| Management And General | $5,023 | ManagementAndGeneralAmt |
| Fundraising | $9,768 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $47,789 | TotalAmt |
| Program Services | $32,849 | ProgramServicesAmt |
| Management And General | $8,264 | ManagementAndGeneralAmt |
| Fundraising | $6,676 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $250,194 | TotalAmt |
| Program Services | $198,384 | ProgramServicesAmt |
| Management And General | $47,520 | ManagementAndGeneralAmt |
| Fundraising | $4,290 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,021 | TotalAmt |
| Program Services | $2,486 | ProgramServicesAmt |
| Management And General | $9,213 | ManagementAndGeneralAmt |
| Fundraising | $3,322 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| SUBSCRIPTIONS & LICENSI | $306,389 | $280,541 | $0 | $25,848 |
| CREDIT CARD & BANK FEES | $27,790 | $213 | $397 | $27,180 |
| FACILITIES & EQUIPMENT | $15,239 | $1,000 | $14,239 | $0 |
| PRINTING AND COPYING | $13,354 | $4,091 | $1,125 | $8,138 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,657 | TotalAmt |
| Program Services | $5,356 | ProgramServicesAmt |
| Management And General | $2,682 | ManagementAndGeneralAmt |
| Fundraising | $12,619 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,277,236 | TotalAmt |
| Program Services | $12,534,019 | ProgramServicesAmt |
| Management And General | $374,757 | ManagementAndGeneralAmt |
| Fundraising | $368,460 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,076,159 | BOYAmt |
| EOY | $1,776,063 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,880,952 | BOYAmt |
| EOY | $2,220,120 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $766,590 | BOYAmt |
| EOY | $693,221 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $49,155 | BOYAmt |
| EOY | $67,503 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,870,166 | BOYAmt |
| EOY | $1,705,100 | EOYAmt |
Investments Other Securities InvestmentsOtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| EOY | $432,680 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,458 | BOYAmt |
| EOY | $5,458 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $103,796 | BOYAmt |
| EOY | $46,404 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,752,276 | BOYAmt |
| EOY | $6,946,549 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,489,034 | BOYAmt |
| EOY | $615,612 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,567 | BOYAmt |
| EOY | $10,630 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $112,047 | BOYAmt |
| EOY | $49,940 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,605,648 | BOYAmt |
| EOY | $676,182 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,182,849 | BOYAmt |
| EOY | $3,919,967 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $963,779 | BOYAmt |
| EOY | $2,350,400 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,146,628 | BOYAmt |
| EOY | $6,270,367 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,752,276 | BOYAmt |
| EOY | $6,946,549 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | -$141,810 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $173,831 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $91,718 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $12,628,384 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,808,772 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $11,604,349 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $12,011,078 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $13,517,065 | CurrentTaxYearAmt |
| Total | $57,569,648 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $12,628,384 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,808,772 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $11,604,349 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $12,011,078 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $13,517,065 | CurrentTaxYearAmt |
| Total | $57,569,648 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $16,878,960 | SubstantialContributorsTotAmt |
| Public Support Total170 | $40,690,688 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $38,997 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $47,170 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $65,540 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $130,614 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $145,621 | CurrentTaxYearAmt |
| Total | $427,942 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $57,997,590 | TotalSupportAmt |
| Public Support CY170 | 0.70160 | PublicSupportCY170Pct |
| Public Support PY170 | 0.74780 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $3,586 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $11,586 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $15,172 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $12,827,374 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $12,842,546 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $792,127 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $198,032 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $629,867 | CurrentYearMinus3Amt |
| Current Year Minus2 | $742,201 | CurrentYearMinus2Amt |
| Current Year Minus1 | $757,339 | CurrentYearMinus1Amt |
| Current Year | $792,127 | CurrentYearAmt |
| Total | $2,921,534 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $4,382,301 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $19,687 | CurrentYearMinus3Amt |
| Current Year Minus2 | $20,584 | CurrentYearMinus2Amt |
| Current Year Minus1 | $20,400 | CurrentYearMinus1Amt |
| Current Year | $15,172 | CurrentYearAmt |
| Total | $75,843 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $157,467 | CurrentYearMinus3Amt |
| Current Year Minus2 | $185,550 | CurrentYearMinus2Amt |
| Current Year Minus1 | $189,335 | CurrentYearMinus1Amt |
| Current Year | $198,032 | CurrentYearAmt |
| Total | $730,384 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $1,095,576 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $3,570 | CurrentYearMinus3Amt |
| Current Year Minus2 | $3,567 | CurrentYearMinus2Amt |
| Current Year Minus1 | $3,700 | CurrentYearMinus1Amt |
| Current Year | $3,586 | CurrentYearAmt |
| Total | $14,423 | TotalAmt |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
Other Securities OtherSecuritiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | ISHARES CORE S&P 500 EFT | Desc |
| Book Value | $432,680 | BookValueAmt |
| Method Valuation | F | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Securities | $432,680 | TotalBookValueSecuritiesAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | LEASE LIABILITIES, CURRENT PORTION | Desc |
| Amt | $49,940 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $49,940 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART X, LINE 2: | FormAndLineReferenceDesc |
| Explanation | THE 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, 2024, 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, 2024. | ExplanationTxt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| EUROPE | 0 | 1 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $1,804,190 |
| EAST ASIA AND THE PACIFIC | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $970,045 |
| SOUTH AMERICA | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $93,500 |
| CANADA | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $427,972 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 1 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 1 | TotalEmployeeCnt |
| Subtotal Spent | $3,295,707 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $3,295,707 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (27 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $417,769 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $181,411 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $30,000 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $77,800 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $98,960 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $7,736 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $156,369 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $90,900 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $67,850 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $42,600 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $125,000 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $196,928 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $80,000 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $120,240 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $88,777 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $104,068 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $85,500 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $124,923 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $130,750 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $407,105 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $139,548 | WIRE | $0 |
| NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) | MEDICAL RESEARCH | $7,000 | WIRE | $0 |
| NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) | MEDICAL RESEARCH | $10,913 | WIRE | $0 |
| NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) | MEDICAL RESEARCH | $53,600 | WIRE | $0 |
| NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) | MEDICAL RESEARCH | $356,459 | WIRE | $0 |
| SOUTH AMERICA- ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR | MEDICAL RESEARCH | $58,500 | WIRE | $0 |
| SOUTH AMERICA- ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR | MEDICAL RESEARCH | $35,000 | WIRE | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 25 | Total501c3OrgCnt |
| Total Other Org | 2 | TotalOtherOrgCnt |
Foreign Individuals Grants ForeignIndividualsGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Type Of Assistance | FARA FELLOWS AWARDS | TypeOfAssistanceTxt |
| Region | EUROPE (INCLUDING ICELAND & GREENLAND) | RegionTxt |
| Recipient | 3 | RecipientCnt |
| Cash Grant | $40,050 | CashGrantAmt |
| Manner Of Cash Disbursement | WIRE | MannerOfCashDisbursementTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | GRANTS 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. FARA INSTITUTED A PROGRAM TO SUPPORT YOUNG EMERGING SCIENTISTS (UP TO SIX PER YEAR) WITH THE FARA FELLOWS AWARD. APPLICATIONS ARE SUBMITTED BY THE FELLOWS AND THEIR MENTORS AND ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY THE BOARD. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | FARA ENERGY BALL | Event1Nm |
| Gross Receipts Event1 | $1,651,351 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,153,631 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $497,720 | GrossRevenueEvent1Amt |
| Rent Facility Costs Event1 | $144,106 | RentFacilityCostsEvent1Amt |
| Entertainment Event1 | $10,500 | EntertainmentEvent1Amt |
| Other Direct Expenses Event1 | $416,430 | OtherDirectExpensesEvent1Amt |
| Event2 | RIDEATAXIA PHILA | Event2Nm |
| Gross Receipts Event2 | $578,416 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $562,366 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $16,050 | GrossRevenueEvent2Amt |
| Rent Facility Costs Event2 | $3,206 | RentFacilityCostsEvent2Amt |
| Other Direct Expenses Event2 | $107,521 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 16 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,781,198 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,646,183 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $135,015 | GrossRevenueOtherEventsAmt |
| Rent Fclty Costs Other Events | $16,028 | RentFcltyCostsOtherEventsAmt |
| Oth Direct Expnss Other Events | $504,964 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $4,010,965 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $3,362,180 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $648,785 | GrossRevenueTotalEventsAmt |
| Rent Fclty Costs Total Events | $163,340 | RentFcltyCostsTotalEventsAmt |
| Entertainment Total Events | $10,500 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $1,028,915 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $1,202,755 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$553,970 | NetIncomeSummaryAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Individual With Books | FELICIA DEROSA | IndividualWithBooksNm |
Persons With Books US Address PersonsWithBooksUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1Txt |
| City | DOWNINGTOWN | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19335 | ZIPCd |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (32 entries)
| Address Line1USAddress/AddressLine1Txt | Address Line2USAddress/AddressLine2Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|---|---|
| BOARD REGENTS OF THE UNIVERSITY OF OKLAHOMA | |||||||||
| FIVE PARTNERS PLACE STE 3100 201 | STEPHENSON PARKWAY | NORMAN | OK | 73019 | 731377584 | 501(C)(3) | $116,813 | $0 | MEDICAL RESEARCH |
| BOSTON COLLEGE | |||||||||
| 140 COMMONWEALTH AVE | CHESTNUT HILL | MA | 02467 | 042103545 | 501(C)(3) | $38,000 | $0 | MEDICAL RESEARCH | |
| CALIFORNIA INSTITUTE OF TECHNOLOGY | |||||||||
| 1200 EAST CALIFORNIA BLVD | PASADENA | CA | 91125 | 951643307 | 501(C)(3) | $100,000 | $0 | MEDICAL RESEARCH | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA RESEARCH INSTITUTE | |||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $713,919 | $0 | MEDICAL RESEARCH | |
| COLUMBIA UNIVERSITY | |||||||||
| 615 W 131ST STREET 6TH FLOOR MC8725 | NEW YORK | NY | 10027 | 135598093 | 501(C)(3) | $125,000 | $0 | MEDICAL RESEARCH | |
| EMORY UNIVERSITY | |||||||||
| 1390 OXFORD ROAD NE 3RD FLOOR | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | $5,991 | $0 | MEDICAL RESEARCH | |
| EPICRISPR BIOTECHNOLOGIES INC | |||||||||
| 7000 SHORELINE COURT SUITE 100 | SOUTH SAN FRANCISCO | CA | 94080 | 824177431 | $100,000 | $0 | MEDICAL RESEARCH | ||
| JOHN HOPKINS UNIVERSITY | |||||||||
| 733 N BROADWAY SUITE 117 | BALTIMORE | MD | 21205 | 520595110 | 501(C)(3) | $86,175 | $0 | MEDICAL RESEARCH | |
| MASSACHUSETTS GENERAL HOSPITAL | |||||||||
| 55 FRUIT STREET | BOSTON | MA | 02114 | 043230035 | 501(C)(3) | $313,988 | $0 | MEDICAL RESEARCH | |
| NATIONWIDE CHILDREN'S HOSPITAL | |||||||||
| 700 CHILDRENS DR | COLUMBUS | OH | 43205 | 311036372 | 501(C)(3) | $9,012 | $0 | MEDICAL RESEARCH | |
| REGENTS OF THE UNIVERSITY OF MINNESOTA | |||||||||
| 600 MCNAMARA ALUMNI CENTER SE 200 | SE OAK ST | MINNEAPOLIS | MN | 55455 | 416007513 | 501(C)(3) | $339,615 | $0 | MEDICAL RESEARCH |
| RGENTA THERAPEUTICS INC | |||||||||
| 300 TRADECENTER DR SUITE 6600 | WOBURNMA | MA | 01801 | 237094113 | $125,000 | $0 | MEDICAL RESEARCH | ||
| ST JUDE CHILDREN'S RESEARCH HOSPITAL | |||||||||
| 262 DANNY THOMAS PLACE | MEMPHIS | TN | 38105 | 620646012 | 501(C)(3) | $67,138 | $0 | MEDICAL RESEARCH | |
| STANFORD UNIVERSITY | |||||||||
| 450 JANE STANFORD WAY | STANFORD | CA | 94305 | 941156365 | 501(C)(3) | $250,000 | $0 | MEDICAL RESEARCH | |
| STEALTH BIOTHERAPEUTICS INC | |||||||||
| 123 HIGHLAND AVE STE 201 | NEEDHAM | MA | 02494 | 261512085 | $185,182 | $0 | MEDICAL RESEARCH | ||
| THE BROAD INSTITUTE | |||||||||
| 415 MAIN STREET | CAMBRIDGE | MA | 02142 | 263428781 | 501(C)(3) | $1,945,086 | $0 | MEDICAL RESEARCH | |
| THE HIGHEST ROAD FILM LLC | |||||||||
| 1023 PHEASANT RIDGE DRIVE | GRAPEVINE | TX | 76051 | 992207841 | $80,000 | $0 | DISEASE AWARENESS | ||
| THE NATIONAL CANCER INSTITUTE | |||||||||
| BUILDING 31 ROOM 11A-16 9000 | ROCKVILLE PIKE | BETHESDA | MD | 20892 | 015208581 | 501(C)(3) | $124,922 | $0 | MEDICAL RESEARCH |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS | |||||||||
| ONE SHIELDS AVE | DAVIS | CA | 95616 | 946036494 | 501(C)(3) | $150,000 | $0 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO | |||||||||
| 9500 GILMAN DRIVE | LA JOLLA | CA | 92093 | 956006144 | 501(C)(3) | $194,830 | $0 | MEDICAL RESEARCH | |
| THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER | |||||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75390 | 746000089 | 501(C)(3) | $74,768 | $0 | MEDICAL RESEARCH | |
| THE WINIFRED MASTERSON BURKE MEDICAL RESEARCH INSTITUTE | |||||||||
| 785 MAMARONECK AVENUE | WHITE PLAINS | NY | 10605 | 133434924 | 501(C)(3) | $61,572 | $0 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES | |||||||||
| 10920 WILSHIRE BLVD 5TH FLOOR | LOS ANGELES | CA | 90024 | 956006143 | 501(C)(3) | $45,145 | $0 | MEDICAL RESEARCH | |
| UNIVERSITY OF COLORADO | |||||||||
| 1800 GRANT STREET | DENVER | CO | 80203 | 846000555 | 501(C)(3) | $5,483 | $0 | MEDICAL RESEARCH | |
| UNIVERSITY OF FLORIDA | |||||||||
| DEPT OF NEUROLOGY L3-100 MCKNIGHT | BRAIN INSTITUTE NEWELL DRIVE | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $359,182 | $0 | MEDICAL RESEARCH |
| UNIVERSITY OF MASSACHUSETTS | |||||||||
| 100 MORRISSEY BLVD | BOSTON | MA | 02125 | 043167352 | 501(C)(3) | $300,000 | $0 | MEDICAL RESEARCH | |
| UNIVERSITY OF ROCHESTER | |||||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $100,000 | $0 | MEDICAL RESEARCH | |
| UPLIFTING ATHLETES | |||||||||
| PO BOX 574 8 ATKINSON DRIVE | DOYLESTOWN | PA | 18901 | 341986485 | 501(C)(3) | $10,000 | $0 | MEDICAL RESEARCH | |
| USF FOUNDATION | |||||||||
| 4202 E FOWLER AVE ALC100 | TAMPA | FL | 33620 | 590879015 | 501(C)(3) | $100,000 | $0 | MEDICAL RESEARCH | |
| VESIGEN INC | |||||||||
| 790 MEMORIAL DRIVE SUITE 103 | CAMBRIDGE | MA | 02139 | 842449757 | $204,136 | $0 | MEDICAL RESEARCH | ||
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | |||||||||
| 1300 YORK AVENUE C-118 | NEW YORK | NY | 10065 | 131623978 | 501(C)(3) | $274,855 | $0 | MEDICAL RESEARCH | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION | |||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 232237932 | 501(C)(3) | $500,000 | $0 | MEDICAL RESEARCH | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 27 | Total501c3OrgCnt |
| Total Other Org | 5 | TotalOtherOrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Type | FARA FELLOWS AWARD | GrantTypeTxt |
| Recipient | 1 | RecipientCnt |
| Cash Grant | $13,350 | CashGrantAmt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | GRANTS 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. FARA INSTITUTED A PROGRAM TO SUPPORT YOUNG EMERGING SCIENTISTS (UP TO SIX PER YEAR) WITH THE FARA FELLOWS AWARD. APPLICATIONS ARE SUBMITTED BY THE FELLOWS AND THEIR MENTORS AND ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY THE BOARD. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| BARBARA A TATE | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $250,000 | $0 | $0 | $0 | $0 | $0 | $4,833 | $0 | $694 | $0 | $255,527 | $0 | $0 | $0 |
| JENNIFER M FARMER | ||||||||||||||
| CHIEF EXECUTIVE OFFICER | $165,000 | $0 | $0 | $0 | $0 | $0 | $4,950 | $0 | $728 | $0 | $170,678 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 12 | ContributionCnt |
| Noncash Contributions Rpt F990 | $460,344 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | HI-LOW DATE OF GIFT | MethodOfDeterminingRevenuesTxt |
Other Non Cash Contri Table OtherNonCashContriTableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Desc | AUCTION ITEMS | Desc |
| Contribution | 495 | ContributionCnt |
| Noncash Contributions Rpt F990 | $421,167 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FAIR MARKET VALUE | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, COLUMN (B): | FormAndLineReferenceDesc |
| Explanation | FOR LINE 9, THE ORGANIZATION RECOGNIZES IN COLUMN B EACH UNIQUE STOCK CONTRIBUTION RECEIVED FROM A DONOR. FOR LINE 25, THE COUNT OF AUCTION ITEMS REPRESENTS EACH INDIVIDUAL CONTRIBUTION BY A DONOR. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 4A | RESEARCH AND GRANT PROGRAM FARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2024, FARA AWARDED $10+ MILLION IN RESEARCH FUNDING. THIS INCLUDED 46 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 AND SUPPORT FOR COMMUNITY AWARENESS WHICH ARE DESCRIBED IN THE SECOND AND THIRD PROGRAM SECTIONS BELOW. FARA GRANT PROGRAM: FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-SIX NEW GRANTS AND APPROVED CONTINUED FUNDING FOR TWENTY GRANTS. RESEARCHERS ON FIVE CONTINENTS 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 BUILDING THE NEXT GENERATIONS OF FA SCIENTISTS, IN 2024, FARA AWARDED GRANTS TO 11 JUNIOR INVESTIGATORS. 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 CAN 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 CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA) 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 CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA), 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. CLEMENTINA MESAROS- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY. 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. FOR EXAMPLE, 95% OF INDIVIDUALS WITH FA HAVE THE SAME GENE MUTATION, A GAA REPEAT EXPANSION, HOWEVER, 5% OF INDIVIDUALS HAVE NON-GAA REPEAT MUTATIONS. COE CLINICIANS OBSERVED THAT INDIVIDUALS WITH CERTAIN NON-GAA MUTATIONS HAVE DIFFERENT CLINICAL SYMPTOMS AND DISEASE PROGRESSION (BOTH MORE AND LESS SEVERE). THESE CLINICAL OBSERVATIONS SPARKED LAB-BASED STUDIES INTO HOW SPECIFIC MISSENSE MUTATIONS MAY AFFECT FRATAXIN'S FUNCTION BEYOND ITS WELL-KNOWN ROLE IN IRON-SULFUR CLUSTER SYNTHESIS. THIS WORK EXPLORES WHETHER FRATAXIN MAY HAVE ADDITIONAL CELLULAR ACTIVITIES, OFFERING BOTH A NEW LENS THROUGH WHICH TO UNDERSTAND DISEASE VARIABILITY AND THE EXPLORATION OF NEW THERAPEUTIC TARGETS. 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. 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. LED BY DR. VAMSI MOOTHA, THE FAA'S OVERARCHING GOAL IS TO NUCLEATE A RESEARCH COMMUNITY THAT LEVERAGES THE LATEST ADVANCES IN BIOMEDICAL RESEARCH TO DEVELOP NEW THERAPEUTIC STRATEGIES. DR. DAVID LIU HAS BEEN INVESTIGATING THERAPEUTIC APPROACHES THAT WOULD EDIT THE FRATAXIN GENE, WITH THE GOAL OF REMOVING THE GAA REPEATS (PRIME EDITING) OR INTERRUPTING THE GAA REPEATS (BASE EDITING) AND THUS REACTIVATING THE PROTEIN EXPRESSION. DR. GARY RUVKUN (A 2024 NOBEL LAUREATE) IS WORKING TO DISCOVER PROTEINS THAT INTERACT WITH FRATAXIN. DRS. JONATHAN AND CHRISTINE SEIDMAN ARE DISCOVERING CHANGES IN THE HEARTS OF PEOPLE WITH FA, INCLUDING AN INCREASE IN INFLAMMATION. THIS WORK IS FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA. IT DEEPENS OUR KNOWLEDGE OF FA, AND THESE LEARNINGS WERE SHARED BY FOUR MEMBERS OF THE FAA WHO PRESENTED THEIR WORK AT THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) IN NOVEMBER IN LONDON. FARA DIRECTED RESEARCH: IN 2024, 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. STUDY PROGRESS IN 2024 AT THE PARTICIPATING CLINICAL SITES IN USA, BRAZIL, CANADA, GERMANY, AND AUSTRALIA OF THE 279 PARTICIPANTS ENROLLED IN THE STUDY, 100% HAD COMPLETED THEIR BASELINE AND 12-MONTH VISITS, AND MORE THAN HALF HAD COMPLETED THEIR FINAL VISITS. THIS REMARKABLE PROGRESS KEEPS THE STUDY ON TRACK TO FINALIZE DATA COLLECTION OF NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS, IN 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. LEADING WORK TO CREATE A NEW DISEASE MODEL FOR PRE-CLINICAL RESEARCH, AN FA RAT MODEL. 6. 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. 7. ONGOING MAINTENANCE OF CLINICAL MANAGEMENT GUIDELINES IN FA FOR REFERENCE USE BY PHYSICIANS AND PATIENTS (PUBLISHED IN 2022): FRDAGUIDELINES.ORG 8. RETROSPECTIVE CARDIAC NATURAL HISTORY STUDY-THIS PROJECT RE-ANALYZES 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. |
| FORM 990, PART VI, SECTION B, LINE 11B | COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL 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 15 | EVALUATION 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 19 | FORM 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 91,718. |
| FORM 990, PART XII, LINE 2C | FARA'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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | STICHTING FRIEDREICH'S ATAXIA RESEARCH ALLIANCE EUROPE | BusinessNameLine1Txt |
Foreign Address ForeignAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | JACHTHAVENWEG 111 | AddressLine1Txt |
| City | KM AMSTERDAM | CityNm |
| Country | NL | CountryCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Primary Activities | RESEARCH | PrimaryActivitiesTxt |
| Legal Domicile Foreign Country | NL | LegalDomicileForeignCountryCd |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FRIEDREICH'S ATAXIA RESEARCH ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | Yes (1) | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | 0 | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | 0 | SharingOfFacilitiesInd |
| Paid Employees Sharing | 0 | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |