FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2022
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2022-01-01 to 2022-12-31
- Filed
- 2023-07-14
- IRS object ID
- 202301959349300445
- Schema version
- 2022v5.0
- 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
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2023-07-14T11:31:01-05:00 | ReturnTs |
| Tax Period End | 2022-12-31 | 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 | 2022-01-01 | 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 | 2023-07-12 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | JENNIFER | PersonFirstNm |
| Person Last | FARMER | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | 999009999 | SSN |
| 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 |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 2 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2022 | TaxYr |
| Build TS | 2023-04-26 12:10:37Z | 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 | $12,313,824 | 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 | 18 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 16 | VotingMembersIndependentCnt |
| Total Employee | 16 | TotalEmployeeCnt |
| Total Volunteers | 500 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $7,683,701 | PYContributionsGrantsAmt |
| CY Contributions Grants | $11,604,349 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $306,924 | PYInvestmentIncomeAmt |
| CY Investment Income | $78,516 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$272,847 | PYOtherRevenueAmt |
| CY Other Revenue | -$639,954 | CYOtherRevenueAmt |
| PY Total Revenue | $7,717,778 | PYTotalRevenueAmt |
| CY Total Revenue | $11,042,911 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $7,398,876 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $9,234,269 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,160,225 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $1,194,386 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $225,114 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $552,566 | PYOtherExpensesAmt |
| CY Other Expenses | $704,092 | CYOtherExpensesAmt |
| PY Total Expenses | $9,111,667 | PYTotalExpensesAmt |
| CY Total Expenses | $11,132,747 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$1,393,889 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$89,836 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $7,478,784 | TotalAssetsBOYAmt |
| Total Assets EOY | $7,260,774 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $283,508 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $430,349 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $7,195,276 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $6,830,425 | 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 | $9,012,749 | ExpenseAmt |
| Grant | $8,460,000 | GrantAmt |
| Desc | SEE SCHEDULE O | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,021,876 | ExpenseAmt |
| Grant | $774,269 | 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 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. COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): THE CCRN IS AN INTERNATIONAL NETWORK OF 14 CLINICAL RESEARCH CENTERS (UNITED STATES, CANADA, AUSTRALIA, NEW ZEALAND, AND INDIA) THAT WORK TOGETHER TO ADVANCE TREATMENTS AND CLINICAL CARE FOR INDIVIDUALS WITH FRIEDREICH'S ATAXIA. HAVING SUCH A NETWORK MEANS THAT THERE ARE TRAINED PHYSICIANS AND RESEARCH COORDINATORS READY TO DO CLINICAL RESEARCH STUDIES AND TRIALS. ALSO, THIS NETWORK IS BACKED BY A DATA COORDINATION CENTER THAT FACILITATES ALL ASPECTS OF DATA COLLECTION, DATABASE MANAGEMENT, AND STATISTICAL ANALYSIS OF STUDY DATA. TO LEARN MORE AND REVIEW A LIST OF RESEARCH PUBLICATIONS, VISIT CUREFA.ORG/NETWORK.HTMLTHE CCRN LEADS A NATURAL HISTORY AND CLINICAL OUTCOME MEASURE STUDY, CALLED FACOMS. FACOMS HAS MORE THAN 1400 INDIVIDUALS WITH FA ENROLLED AND THE LONGITUDINAL DATA HAS LED TO A BETTER UNDERSTANDING OF SYMPTOMS AND PROGRESSION OF DISEASE. FURTHERMORE, THE CCRN AND FACOMS HAVE VALIDATED CLINICAL OUTCOME MEASURES AND THE FARS SCALE, STUDIED SPEECH, VISION AND HEARING, LAUNCHED BIOMARKER STUDIES, ESTABLISHED DNA AND RNA REPOSITORIES, AND PROVIDED MANY BLOOD SAMPLES TO RESEARCHERS AROUND THE WORLD. THE CCRN IN FA INVESTIGATORS HAVE BEEN INVOLVED IN >12 CLINICAL TRIALS INCLUDING A FEW THAT WERE DESIGNED AND CONDUCTED SOLELY THROUGH NETWORK SITES. ONE CLINICAL TRIAL CONDUCTED THROUGH CCRN CENTERS HAS LED TO THE FIRST APPROVED MEDICATION OR TREATMENT OF FA, AND THE NATURAL HISTORY STUDY DATA WAS ALSO CRITICAL IN DESIGNING THE TRIAL AND UNDERSTANDING THE MEANINGFULNESS OF THE TRIAL OUTCOMES.THE FACOMS STUDY AND THE EFACTS NATURAL HISTORY STUDY (EUROPEAN UNION COUNTRIES) HAVE BEEN CONDUCTED IN PARALLEL, FOR OVER A DECADE, WITH MANY SIMILARITIES. IN 2022, FARA BROUGHT TOGETHER INVESTIGATORS OF BOTH FACOMS AND EFACTS TO COMBINE EFFORTS INTO A SINGLE GLOBAL CONSORTIUM WITH A UNIFIED NATURAL HISTORY AND CLINICAL RESEARCH INFRASTRUCTURE. THE NEW FA GLOBAL CLINICAL CONSORTIUM AND A GLOBAL NATURAL HISTORY STUDY PROTOCOL, THE UNIFAI STUDY, ARE BEING ESTABLISHED TO CONTINUE TO IMPROVE THE PANEL OF OUTCOME MEASURES THAT CAN BE USED IN FA CLINICAL TRIALS, WITH THE GOALS TO BETTER ORGANIZE AND HARMONIZE THE NATURAL HISTORY ECOSYSTEM AND ALLOW FOR A COMPLETE VIEW OF DISEASE PROGRESSION OF FA. ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2022 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG/FINANCIALS | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $372,529 | ExpenseAmt |
| Desc | EDUCATION, AWARENESS & OUTREACH PROGRAMSFRIEDREICH 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 CONDUCTED A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGED COMMUNITY PARTICIPATION LEADING UP TO RARE DISEASE DAY AND FA AWARENESS DAY. FARA AND THE NATIONAL ATAXIA FOUNDATION (NAF) ALSO PARTNERED ON SEVERAL ADVOCACY INITIATIVES RELEVANT TO THE ATAXIA COMMUNITY. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN FA BEING ADDED TO THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 22, RESULTING IN SIX FA RESEARCHERS BEING RECOMMENDED FOR FUNDING TOTALING OVER $14 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2022 NATIONAL ATAXIA AWARENESS DAY (S.RES 850) AND HOSTING THE FOURTH UNITED AGAINST ATAXIA HILL DAY. IN 2022, 78 CONGRESSIONAL MEETINGS WERE HELD WITH 88 FARA AND NAF ADVOCATES PARTICIPATING FROM 31 STATES AND THE DISTRICT OF COLUMBIA. THE PRIMARY ASK WAS TO BROADEN THE DEFINITION ON THE CDMRP FROM "FRIEDREICH'S ATAXIA" TO "HEREDITARY ATAXIA", WHICH WOULD PROVIDE ADDITIONAL FUNDING FOR ATAXIA RESEARCHERS IN FY23. PRESIDENT BIDEN SIGNED THE FISCAL YEAR (FY) 23 CONGRESSIONAL BUDGET ON DECEMBER 29 WHICH LISTED "HEREDITARY ATAXIA" UNDER THE CDMRP'S PEER REVIEWED MEDICAL RESEARCH PROGRAM. THE FARA AMBASSADOR PROGRAM, WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2022. THE PROGRAM NOW INCLUDES >80 PARTICIPANTS. THE MISSION OF THE FARA AMBASSADORS IS TO BE POSITIVE, SUPPORTIVE, PEER REPRESENTATIVES FOR THE FA COMMUNITY; ACTIVELY RAISING AWARENESS AND FUNDS FOR FARA. THE FARA AMBASSADOR PROGRAM MEMBERS ORGANIZE SERVICE PROJECT TEAMS INCLUDING:1. A BLOG TEAM THAT FACILITATES WEEKLY MEET THE COMMUNITY INTERVIEWS WITH PEOPLE LIVING WITH FA AND A MONTHLY MEET THE RESEARCHER INTERVIEW. 2. A CARD WRITING TEAM THAT WRITES PERSONALIZED CARDS TO SEND TO THE VARIOUS STAKEHOLDERS AND COMMUNITY MEMBERS THROUGHOUT THE YEAR TO SAY THANK YOU OR TO OFFER ENCOURAGEMENT. 3. A MONTHLY PEER ZOOM HANGOUT GROUPS FOR THE GREATER FA COMMUNITY TO ATTEND AND CONNECT WITH ONE ANOTHER ONLINE (ONE IS GEARED TO ADULTS, AND ONE IS FOR TEENS WITH FA). 4. A SOCIAL MEDIA TEAM THAT GENERATES ENGAGING CONTENT IN SUPPORT OF FARA INITIATIVES AND CAMPAIGNS. 5. A SPEAKING TEAM WHERE PARTICIPANTS PRACTICE TELLING THEIR STORY LIVING WITH FA ON BEHALF OF THE ORGANIZATION.AMBASSADORS AND OTHER COMMUNITY REPRESENTATIVES CONNECTED WITH MANY OF FARA'S ACADEMIC AND INDUSTRY PARTNERS AS WELL AS REGULATORY AGENCIES LIKE THE FOOD AND DRUG ADMINISTRATION BY SERVING ON PATIENT PANELS AT 12 EVENTS. AMBASSADORS ALSO PARTICIPATED IN EDUCATION PROGRAMS TARGETING MEDICAL PROFESSIONALS, E.G., SPEAKING TO TRAINEES IN GENETIC COUNSELING PROGRAMS AND MEDICAL STUDENTS. FOR MORE INFORMATION VISIT CUREFA.ORG/AMBASSADORS.GROUP FARA HOSTED SEVERAL EDUCATION AND ENGAGEMENT INITIATIVES IN 2022. FOR EXAMPLE. FARA CONTINUED A VIDEO SERIES TO EDUCATE FA FAMILIES AND SUPPORTERS ON THE FARA GRANT PROGRAM. EACH EPISODE EXPLAINS A TYPE OF RESEARCH FUNDED BY FARA IN A 5-MINUTE ANIMATED VIDEO, NARRATED BY AN FA COMMUNITY MEMBER. FARA RELEASED SIX MINUTES OF SCIENCE VIDEOS IN 2022. FARA ALSO OFFERED THE FLASH TALKS SERIES IN MAY WHICH ALLOWED YOUNG INVESTIGATORS TO EXPLAIN THEIR RESEARCH IN LAYMAN TERMS AND TO ANSWER QUESTIONS IN A VIRTUAL FORMAT. IN OCTOBER, FARA PUBLISHED A GUIDE FOR CLINICAL TRIALS PARTICIPANTS. THIS 12-PAGE GUIDE CONTAINS INFORMATION ON THE DIFFERENT PHASES OF CLINICAL TRIALS, TERMS TO KNOW, CLINICAL TRIAL ETIQUETTE, SAFETY MONITORING, AND A GUIDE TO INFORMED CONSENT. IT IS INTENDED TO HELP PEOPLE UNDERSTAND THE DRUG DEVELOPMENT PROCESS SO THAT THEY CAN MAKE AN INFORMED DECISION ON PARTICIPATING IN CLINICAL TRIALS. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $222,693 | ExpenseAmt |
| Desc | WORKSHOPS, SYMPOSIA, & CONFERENCESFARA HOSTED A HYBRID IN-PERSON AND VIRTUAL SINGLE-DAY EDUCATIONAL SYMPOSIUM FOR >200 PATIENTS AND CAREGIVERS IN KING OF PRUSSIA, PA (SEPTEMBER 25, 2022). THIS SYMPOSIUM PROVIDED AN OPPORTUNITY TO EDUCATE THE PATIENT/FAMILY COMMUNITY ON RESEARCH ADVANCES, PROGRESS ON CLINICAL TRIALS AND WAS A UNIQUE FORUM FOR PATIENTS AND RESEARCHERS TO ENGAGE AND LEARN FROM EACH OTHER'S EXPERIENCES AND PERSPECTIVES. INTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN PARTNERSHIP WITH THE NATIONAL ATAXIA FOUNDATION AND ATAXIA UK, FARA ALSO ORGANIZED AND SPONSORED THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH IN NOVEMBER 2022. OVER 450 PEOPLE ATTENDED, INCLUDING THOSE FROM ACADEMIA, INDUSTRY, AND PATIENT ADVOCACY GROUPS. MORE THAN ONE THIRD OF THE PARTICIPANTS WERE JUNIOR INVESTIGATORS WHICH SUPPORTS THE GOAL OF BRINGING NEW TALENT TO THE FIELD AND GROWING THE NEXT GENERATION OF ATAXIA RESEARCHERS. IN ADDITION TO THE OPPORTUNITY TO VIEW NEARLY 300 PRESENTATIONS, MOST ATTENDEES REPORTED MAKING NEW CONTACTS, WHICH STIMULATES COLLABORATION AND PARTNERSHIPS. KEY TAKEAWAYS FROM THE MEETING INCLUDED NEW INSIGHTS INTO THE DISEASE MECHANISMS IN FA, POTENTIAL NEW BIOMARKERS, AND THE USE OF DIGITAL ASSESSMENTS OF ATAXIA.GENE THERAPY IN FA MEETINGIN 2022, FARA ORGANIZED A MEETING WITH THE FOOD AND DRUG ADMINISTRATION (FDA) AND OVER A DOZEN COMPANIES WORKING ON GENE THERAPY AND GENE EDITING PROGRAMS FOR FA. THE MEETING RESULTED IN ALIGNMENT WITH THE REGULATORY AGENCY ON SEVERAL ASPECTS OF THESE INNOVATIVE APPROACHES. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $222,693 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $10,629,847 | 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 | 0 | 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 | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | 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 | 0 | 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 | 0 | 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 | 0 | 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 | 3 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 16 | 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 | 18 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 16 | 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 (21 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/DIR OF FINANCE ADMIN, HR | 25.00 | Yes (X) | Yes (X) | $45,203 | $0 | $13,197 | |
| PAUL AVERY | |||||||
| CHAIRMAN/ DIRECTOR | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| MARILYN E DOWNING | |||||||
| 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 | ||
| 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) | $150,000 | $0 | $5,228 | ||
| BARBARA A TATE | |||||||
| CHIEF SCIENTIFIC OFFICER | 40.00 | $250,000 | $0 | $7,108 | Yes (X) | ||
| ELISABETTA SORAGNI | |||||||
| DIRECTOR OF RESEARCH | 40.00 | $106,090 | $0 | $14,246 | Yes (X) | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $661,293 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $43,590 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 4 | 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 | $103,321 | CompensationAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 1 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $11,998 | FederatedCampaignsAmt |
| Fundraising | $4,008,043 | FundraisingAmt |
| All Other Contributions | $7,584,308 | AllOtherContributionsAmt |
| Noncash Contributions | $232,995 | NoncashContributionsAmt |
| Total Contributions | $11,604,349 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $65,540 | TotalRevenueColumnAmt |
| Exclusion | $65,540 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $222,576 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $209,600 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $12,976 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $12,976 | TotalRevenueColumnAmt |
| Exclusion | $12,976 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $421,359 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $4,008,043 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $1,061,313 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$639,954 | TotalRevenueColumnAmt |
| Exclusion | -$639,954 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $11,042,911 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$561,438 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,466,286 | TotalAmt |
| Program Services | $7,466,286 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,767,983 | TotalAmt |
| Program Services | $1,767,983 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $327,439 | TotalAmt |
| Program Services | $218,116 | ProgramServicesAmt |
| Management And General | $67,934 | ManagementAndGeneralAmt |
| Fundraising | $41,389 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $700,894 | TotalAmt |
| Program Services | $607,615 | ProgramServicesAmt |
| Management And General | $59,486 | ManagementAndGeneralAmt |
| Fundraising | $33,793 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $20,945 | TotalAmt |
| Program Services | $12,728 | ProgramServicesAmt |
| Management And General | $1,384 | ManagementAndGeneralAmt |
| Fundraising | $6,833 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $62,268 | TotalAmt |
| Program Services | $28,105 | ProgramServicesAmt |
| Management And General | $7,326 | ManagementAndGeneralAmt |
| Fundraising | $26,837 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $82,840 | TotalAmt |
| Program Services | $54,865 | ProgramServicesAmt |
| Management And General | $7,773 | ManagementAndGeneralAmt |
| Fundraising | $20,202 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $27,405 | TotalAmt |
| Management And General | $27,405 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,000 | TotalAmt |
| Program Services | $13,000 | ProgramServicesAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $244,166 | TotalAmt |
| Program Services | $202,527 | ProgramServicesAmt |
| Management And General | $22,144 | ManagementAndGeneralAmt |
| Fundraising | $19,495 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $46,027 | TotalAmt |
| Program Services | $14,330 | ProgramServicesAmt |
| Management And General | $6,136 | ManagementAndGeneralAmt |
| Fundraising | $25,561 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $44,563 | TotalAmt |
| Program Services | $28,710 | ProgramServicesAmt |
| Management And General | $8,373 | ManagementAndGeneralAmt |
| Fundraising | $7,480 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $149,561 | TotalAmt |
| Program Services | $124,349 | ProgramServicesAmt |
| Management And General | $24,394 | ManagementAndGeneralAmt |
| Fundraising | $818 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,922 | TotalAmt |
| Management And General | $9,278 | ManagementAndGeneralAmt |
| Fundraising | $7,644 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| SUBSCRIPTIONS & LICENSI | $97,343 | $81,515 | $5,614 | $10,214 |
| BAD DEBT | $22,500 | $22,500 | ||
| CREDIT CARD & BANK FEES | $19,070 | $108 | $164 | $18,798 |
| FACILITIES & EQUIPMENT | $8,997 | $2,778 | $5,933 | $286 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,538 | TotalAmt |
| Program Services | $6,832 | ProgramServicesAmt |
| Management And General | $1,942 | ManagementAndGeneralAmt |
| Fundraising | $5,764 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,132,747 | TotalAmt |
| Program Services | $10,629,847 | ProgramServicesAmt |
| Management And General | $277,786 | ManagementAndGeneralAmt |
| Fundraising | $225,114 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,334,786 | BOYAmt |
| EOY | $3,002,584 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,807,813 | BOYAmt |
| EOY | $1,961,536 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $259,819 | BOYAmt |
| EOY | $369,612 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $94,042 | BOYAmt |
| EOY | $52,398 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $0 | LandBldgEquipCostOrOtherBssAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,976,866 | BOYAmt |
| EOY | $1,728,750 | 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 | $0 | BOYAmt |
| EOY | $140,436 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,478,784 | BOYAmt |
| EOY | $7,260,774 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $261,148 | BOYAmt |
| EOY | $276,962 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $22,360 | BOYAmt |
| EOY | $11,490 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $141,897 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $283,508 | BOYAmt |
| EOY | $430,349 | 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 | $4,608,013 | BOYAmt |
| EOY | $5,146,272 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,587,263 | BOYAmt |
| EOY | $1,684,153 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,195,276 | BOYAmt |
| EOY | $6,830,425 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,478,784 | BOYAmt |
| EOY | $7,260,774 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | -$89,836 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$349,445 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $74,430 | 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) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| 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 | $7,662,625 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,146,206 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $12,628,384 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,808,772 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,604,349 | CurrentTaxYearAmt |
| Total | $46,850,336 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $7,662,625 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,146,206 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $12,628,384 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,808,772 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,604,349 | CurrentTaxYearAmt |
| Total | $46,850,336 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $9,138,897 | SubstantialContributorsTotAmt |
| Public Support Total170 | $37,711,439 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $42,296 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $45,345 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $38,997 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $47,170 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $65,540 | CurrentTaxYearAmt |
| Total | $239,348 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $47,089,684 | TotalSupportAmt |
| Public Support CY170 | 0.80080 | PublicSupportCY170Pct |
| Public Support PY170 | 0.83160 | 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 | $3,567 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $17,017 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $20,584 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $11,823,433 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $11,844,017 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $742,201 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $185,550 | 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 | $567,238 | CurrentYearMinus3Amt |
| Current Year Minus2 | $564,107 | CurrentYearMinus2Amt |
| Current Year Minus1 | $629,867 | CurrentYearMinus1Amt |
| Current Year | $742,201 | CurrentYearAmt |
| Total | $2,503,413 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $3,755,120 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $12,259 | CurrentYearMinus3Amt |
| Current Year Minus2 | $9,997 | CurrentYearMinus2Amt |
| Current Year Minus1 | $19,687 | CurrentYearMinus1Amt |
| Current Year | $20,584 | CurrentYearAmt |
| Total | $62,527 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $141,810 | CurrentYearMinus3Amt |
| Current Year Minus2 | $141,027 | CurrentYearMinus2Amt |
| Current Year Minus1 | $157,467 | CurrentYearMinus1Amt |
| Current Year | $185,550 | CurrentYearAmt |
| Total | $625,854 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $938,781 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $7,316 | CurrentYearMinus3Amt |
| Current Year Minus2 | $5,966 | CurrentYearMinus2Amt |
| Current Year Minus1 | $3,570 | CurrentYearMinus1Amt |
| Current Year | $3,567 | CurrentYearAmt |
| Total | $20,419 | TotalAmt |
Schedule D IRS990ScheduleD
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| LEASE LIABILITIES, CURRENT PORTION | $57,082 |
| LONG-TERM LEASE LIABILITIES | $84,815 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $141,897 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $11,734,298 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$349,445 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $153,000 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $887,832 | OtherRevenueAmt |
| Revenue Not Reported | $691,387 | RevenueNotReportedAmt |
| Revenue Subtotal | $11,042,911 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $11,042,911 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $12,099,149 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $153,000 | DonatedServicesUseFcltsAmt |
| Other Expenses Included | $813,402 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $966,402 | ExpensesNotReportedAmt |
| Expenses Subtotal | $11,132,747 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $11,132,747 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART X, LINE 2: | THE INTERNAL REVENUE SERVICE HAS CLASSIFIED FARA AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. 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 FARA, AND HAS CONCLUDED THAT AS OF DECEMBER 31, 2022 AND 2021, 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. FARA RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR THE YEARS ENDED DECEMBER 31, 2022 AND 2021. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE 813,402. PRIOR YEAR GRANT REFUNDS INCLUDED IN SUPPORT ON FINANCIAL STATEMENTS 74,430. |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE 813,402. |
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 | $963,807 |
| EAST ASIA AND THE PACIFIC | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $642,045 |
| SOUTH AMERICA | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $142,631 |
| CANADA | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $19,500 |
| 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 | $1,767,983 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $1,767,983 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (19 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $221,139 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $91,292 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $254,716 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $185,250 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $107,470 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $6,800 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $30,454 | WIRE | $0 |
| SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, | MEDICAL RESEARCH | $46,935 | WIRE | $0 |
| NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) | MEDICAL RESEARCH | $19,500 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $229,940 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $125,000 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $36,617 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $45,800 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $167,607 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $5,110 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $20,000 | WIRE | $0 |
| EUROPE | MEDICAL RESEARCH | $72,536 | WIRE | $0 |
| SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, | MEDICAL RESEARCH | $95,696 | WIRE | $0 |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $6,120 | WIRE | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 16 | Total501c3OrgCnt |
| Total Other Org | 3 | TotalOtherOrgCnt |
| 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 (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 2: | 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. |
| PART III ACCOUNTING METHOD: |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | FARA ENERGY BALL | Event1Nm |
| Gross Receipts Event1 | $1,980,460 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,782,630 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $197,830 | GrossRevenueEvent1Amt |
| Rent Facility Costs Event1 | $174,038 | RentFacilityCostsEvent1Amt |
| Entertainment Event1 | $10,540 | EntertainmentEvent1Amt |
| Other Direct Expenses Event1 | $316,423 | OtherDirectExpensesEvent1Amt |
| Event2 | RIDEATAXIA PHILA | Event2Nm |
| Gross Receipts Event2 | $408,942 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $395,117 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $13,825 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $75,434 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 17 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $2,040,000 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,830,296 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $209,704 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $484,878 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $4,429,402 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $4,008,043 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $421,359 | GrossRevenueTotalEventsAmt |
| Rent Fclty Costs Total Events | $174,038 | RentFcltyCostsTotalEventsAmt |
| Entertainment Total Events | $10,540 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $876,735 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $1,061,313 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$639,954 | 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 (27 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|---|
| CHILDREN'S HOSPITAL OF PHILADELPHIA | |||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $1,146,693 | $0 | MEDICAL RESEARCH | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION | |||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 232237932 | 501(C)(3) | $425,000 | $0 | MEDICAL RESEARCH | |
| OHIO STATE UNIVERSITY | |||||||||
| 333 W 10TH AVE | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | $5,300 | $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) | $40,950 | $0 | MEDICAL RESEARCH | |
| UNIVERSITY OF FLORIDA | |||||||||
| DEPT OF NEUROLOGY L3-100 MCKNIGHT | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $228,887 | $0 | MEDICAL RESEARCH | BRAIN INSTITUTE NEWELL DRIVE |
| UNIVERSITY OF ROCHESTER | |||||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $417,389 | $0 | MEDICAL RESEARCH | |
| ALBANY RESEARCH INSTITUTE | |||||||||
| 113 HOLLAND AVE | ALBANY | NY | 12208 | 141716021 | 501(C)(3) | $108,445 | $0 | MEDICAL RESEARCH | |
| TRUSTREES OF THE UNIVERSITY OF PENNSYLVANIA | |||||||||
| 3451 WALNUT ST RM 310 | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | $342,044 | $0 | MEDICAL RESEARCH | |
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | |||||||||
| 1300 YORK AVENUE C-118 | NEW YORK | NY | 10065 | 131623978 | 501(C)(3) | $100,000 | $0 | MEDICAL RESEARCH | |
| STANFORD UNIVERSITY | |||||||||
| 2770 SAND HILL ROAD | MENLO PARK | CA | 94025 | 941156365 | 501(C)(3) | $125,000 | $0 | MEDICAL RESEARCH | |
| THE BROAD INSTITUTE | |||||||||
| 415 MAIN STREET | CAMBRIDGE | MA | 02142 | 263428781 | 501(C)(3) | $2,291,000 | $0 | MEDICAL RESEARCH | |
| BURKE NEUROLOGICAL INSTITUTE | |||||||||
| 785 MAMARONECK AVENUE | WHITE PLAINS | NY | 10605 | 133434924 | 501(C)(3) | $75,000 | $0 | MEDICAL RESEARCH | |
| CYAGEN BIOMODELS LLC | |||||||||
| 2255 MARTIN AVE STE E | SANTA CLARA | CA | 95050 | 820941939 | $24,539 | $0 | MEDICAL RESEARCH | ||
| MASSACHUSETTS GENERAL HOSPITAL | |||||||||
| 55 FRUIT STREET | BOSTON | MA | 02114 | 041564655 | 501(C)(3) | $71,875 | $0 | MEDICAL RESEARCH | |
| ST JUDE CHILDREN'S RESEARCH HOSPITAL | |||||||||
| 262 DANNY THOMAS PLACE | MEMPHIS | TN | 38105 | 620646012 | 501(C)(3) | $64,902 | $0 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO | |||||||||
| 9500 GILMAN DRIVE | LA JOLLA | CA | 92093 | 956006144 | 501(C)(3) | $125,000 | $0 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF MINNESOTA | |||||||||
| 200 SE OAK ST 600 | MINNEAPOLIS | MN | 55455 | 416007513 | 501(C)(3) | $278,913 | $0 | MEDICAL RESEARCH | |
| THOMAS JEFFERSON UNIVERSITY | |||||||||
| 1020 WALNUT STREET | PHILADELPHIA | PA | 19107 | 232829095 | 501(C)(3) | $150,000 | $0 | MEDICAL RESEARCH | |
| UNIVERSITY OF SOUTH FLORIDA FOUNDATION | |||||||||
| 4202 EAST FOWLER AVE | TAMPA | FL | 33620 | 590879015 | 501(C)(3) | $50,000 | $0 | MEDICAL RESEARCH | |
| THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK | |||||||||
| 154 HAVEN AVENUE SECOND FLOOR | NEW YORK | NY | 10032 | 135598093 | 501(C)(3) | $200,000 | $0 | MEDICAL RESEARCH | |
| CALIFORNIA INSTITUTE OF TECHNOLOGY | |||||||||
| 1200 EAST CALIFORNIA BLVD | PASADENA | CA | 91125 | 951643307 | 501(C)(3) | $67,361 | $0 | MEDICAL RESEARCH | |
| STEALTH BIOTHERAPEUTICS INC | |||||||||
| 123 HIGHLAND AVENUE FLOOR 2 | NEEDHAM HEIGHTS | MA | 02494 | 261512085 | $169,390 | $0 | MEDICAL RESEARCH | ||
| UT SOUTHWESTERN MEDICAL CENTER | |||||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75390 | 756002868 | 501(C)(3) | $365,500 | $0 | MEDICAL RESEARCH | |
| VESIGEN INC | |||||||||
| 790 MEMORIAL DRIVE SUITE 103 | CAMBRIDGE | MA | 01239 | 842449757 | $248,611 | $0 | MEDICAL RESEARCH | ||
| WHITEHEAD INSTITUTE FOR BIOMEDICAL RESEARCH | |||||||||
| 455 MAIN STREET | CAMBRIDGE | MA | 02142 | 061043412 | 501(C)(3) | $100,000 | $0 | MEDICAL RESEARCH | |
| YALE UNIVERSITY | |||||||||
| 25 SCIENCE PARK 150 MUNSON STREET | NEW HAVEN | CT | 06520 | 060646973 | 501(C)(3) | $100,000 | $0 | MEDICAL RESEARCH | |
| TRUSTEES OF THE INDIANA UNIVERSITY | |||||||||
| 509 EAST 3RD ST | BLOOMINGTON | IN | 47401 | 356001673 | 501(C)(3) | $137,187 | $0 | MEDICAL RESEARCH | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 24 | Total501c3OrgCnt |
| Total Other Org | 3 | TotalOtherOrgCnt |
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. | 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 | $6,350 | $0 | $758 | $0 | $257,108 | $0 | $0 | $0 |
| JENNIFER M FARMER | ||||||||||||||
| CHIEF EXECUTIVE OFFICER | $150,000 | $0 | $0 | $0 | $0 | $0 | $4,500 | $0 | $728 | $0 | $155,228 | $0 | $0 | $0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 5 | ContributionCnt |
| Noncash Contributions Rpt F990 | $176,540 | 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 | 196 | ContributionCnt |
| Noncash Contributions Rpt F990 | $56,455 | NoncashContributionsRptF990Amt |
| 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 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 (8 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 2022, FARA AWARDED NEARLY $8.5 MILLION IN RESEARCH FUNDING. THIS INCLUDED 50 ACTIVE RESEARCH PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH AND FARA DIRECTED PROJECTS. FARA GRANT PROGRAM FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-TWO NEW GRANTS AND APPROVED CONTINUED FUNDING FOR SIXTEEN GRANTS. NINE OF THESE NEW GRANTS WERE AWARDED TO INVESTIGATORS NEW TO FA RESEARCH, INCLUDING FOUR JUNIOR INVESTIGATORS. RESEARCHERS IN SEVEN COUNTRIES ARE RECEIVING RESEARCH FUNDING FROM FARA. FARA'S GRANT PROGRAM IS FUNDING RESEARCH THAT FURTHERS THE UNDERSTANDING OF FA AT A VERY BASIC OR MECHANISTIC LEVEL, PROMOTES DRUG DISCOVERY, ADVANCES GENE AND CELL THERAPY APPROACHES, SEEKS TO IDENTIFY NEW BIOMARKERS AND CLINICAL OUTCOME ASSESSMENTS THAT CAN INFORM AND SUPPORT FUTURE CLINICAL TRIALS AND INVESTIGATES APPROACHES TO IMPROVE CLINICAL OUTCOMES FOR THOSE LIVING WITH FA. 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. FARA HAS 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 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. JENNIFER PHILLIPS CREMINS- GENETIC MODELING. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. FOR EXAMPLE, DR. LYNCH, WHO ACTIVELY PARTICIPATES IN BOTH BASIC AND CLINICAL RESEARCH, IS INVESTIGATING WHETHER THE METABOLIC ALTERATIONS HE HAS OBSERVED IN PATIENTS COULD BE DUE TO DYSFUNCTIONS OF SPECIFIC ENZYMES WHEN FRATAXIN LEVELS ARE LOW. HIS FINDINGS HAVE THE POTENTIAL TO IDENTIFY NEW THERAPEUTIC TARGETS. ANOTHER EXAMPLE IS THE EXRX-FA TRIAL, AN NIH SUPPORTED CLINICAL TRIAL THAT INSPIRED THE PRECLINICAL STUDIES ON MUSCLE AND HEART OF THE COE COLLABORATORS, ERIN SEIFERT, PHD AND JOSEPH BAUR, PHD. IN ADDITION, WITH SUPPORT FROM FARA, THE EXRX-FA CLINICAL TRIAL HAS BEEN EXPANDED TO INCLUDE COLLECTION OF BIOMARKER DATA, MEASURES THAT COULD BE USEFUL IN FUTURE THERAPEUTIC TRIALS. A MAJOR ACCOMPLISHMENT IN 2022, LED BY DAVID LYNCH, MD, PHD, WAS THE COMPLETION AND PUBLICATION OF STUDIES OF OMAVELOXOLONE, A NEW TREATMENT THAT HAS COMPLETED CLINICAL TRIALS IN FA. THESE STUDIES PROVIDED THE EVIDENCE NEEDED TO RECEIVE AN EXPEDITED REVIEW OF THIS FIRST NEW DRUG APPLICATION AT THE FDA. THE INVESTIGATORS AT THE COE AT CHOP CONTRIBUTE TO FINDING TREATMENTS FOR FA BY REGULARLY PUBLISHING THEIR WORK, TRAINING NEW INVESTIGATORS TO COMMIT TO RESEARCH ON FA, PARLAYING FARA FUNDING INTO LARGER GRANTS FROM NIH AND BY BEING THE LARGEST SITE FOR THE FA NATURAL HISTORY STUDY. 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. LED BY VAMSI MOOTHA, MD, THE FAA INVESTIGATORS INCLUDE GARY RUVJUM, PHD, DAVID LIU, PHD, CHRISTINE SEIDMAN, MD,JONATHAN SEIDMAN, PHD, ANOOPUM GUPTA, MD AND ANTHONY PHILIPPAKIS, MD. THE FIRST THREE YEARS OF FAA SUPPORTED RESEARCH INITIATIVES TO UNDERSTAND THE DEEP BIOCHEMICAL BASIS OF FA AS WELL AS TO EVALUATE THE THERAPEUTIC POTENTIAL OF NEW EARLY-STAGE INNOVATIVE APPROACHES IN ANIMAL MODELS. PROJECTS INCLUDE EVALUATING HYPOXIA AS A THERAPY, DIRECT EDITING OF DNA TO REPAIR THE FA REPEAT LESION, IDENTIFYING GENETIC/CHEMICAL MODIFIERS THAT CAN BYPASS THE NEED FOR FRATAXIN, AND UNDERSTANDING THE CAUSE OF FA CARDIOMYOPATHY. OVER THE FIRST 2.5 YEARS OF FAA, INVESTMENT IN UNDERSTANDING FA BASIC AND TRANSLATIONAL BIOLOGY HAS ALREADY YIELDED NEW DISCOVERIES (WITH FOUR NEW RESEARCH PAPERS SUBMITTED) AND SUGGEST COMPLETELY NEW THERAPEUTIC AVENUES (WITH THREE NEW PATENTS SUBMITTED). IN 2022, TWO NEW PROJECTS WERE LAUNCHED. ONE TO ACCELERATE ADVANCEMENT OF EFFECTIVE TREATMENTS BY DEVELOPING AT HOME ASSESSMENTS OF MOVEMENT AND SPEECH. THE OTHER TO LEVERAGE EXISTING LARGE BIOBANKS OF GENETIC SEQUENCE DATA TO FURTHER UNDERSTAND THE PREVALENCE OF FA, AS WELL AS POTENTIALLY UNCOVER NOVEL GENETIC MODIFIERS OF THE CONDITION. FAA HAS HAD AN IMPACT IN COMMUNITY BUILDING. DURING THE PAST 2.5 YEARS, FAA HAS ENABLED OVER 20 RESEARCHERS ACROSS FIVE LABORATORIES TO APPLY THEIR EXISTING EXPERTISE TOWARD FA RESEARCH. TWO FAA POST-DOCTORAL FELLOWS HAVE JUST LAUNCHED THEIR OWN INDEPENDENT LABORATORIES THAT WILL CONTINUE FA-RELATED RESEARCH: TSLIL AST AT THE WEIZMANN INSTITUTE AND MANDA ARBAB AT THE BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL NEUROSCIENCE CENTER AND HARVARD MEDICAL SCHOOL. TSLIL AST'S FA RESEARCH RECEIVED THE PRESTIGIOUS ERIC S. LANDER AWARD RECOGNIZING OUTSTANDING ACCOMPLISHMENT IN SCIENCE. FARA DIRECTED RESEARCH IN 2022, 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, DESIGNED A NATURAL HISTORY STUDY TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. PARTICIPATING CLINICAL SITES IN USA, BRAZIL, GERMANY, AND AUSTRALIA CONTINUED ENROLLMENT IN 2022. THE GOAL IS TO ENROLL 200 INDIVIDUALS WITH FA AND 100 MATCHED CONTROLS AND CONDUCT NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS. AT THE CLOSE OF 2022, 122 INDIVIDUALS WITH FA AND 43 CONTROLS HAD BEEN ENROLLED. THE CONSORTIUM PUBLISHED ITS FIRST SCIENTIFIC ARTICLE THAT PRESENTS THE BACKGROUND ON THE TRACK-FA STUDY AND THE SCIENTIFIC PROCEDURES. THE PUBLICATION IS OPEN ACCESS AT: HTTPS://JOURNALS.PLOS.ORG/PLOSONE/ARTICLE?ID=10.1371/JOURNAL.PONE.026964 9 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. ASSEMBLING GLOBAL CLINICAL EXPERTS TO LEAD A RE-EVALUATION AND UPDATE TO THE CLINICAL MANAGEMENT GUIDELINES (CMG) IN FA. AN UPDATE TO THE CMG FOR FA WAS PUBLISHED IN 2022 FOR REFERENCE USE BY PHYSICIANS, AND PATIENTS. THIS PROJECT, LED BY DR. LOUISE CORBEN, IS THE RESULT OF THE EFFORTS OF A 12-PERSON STEERING COMMITTEE, 70 EXPERT AUTHORS, AND AN 11-PERSON PATIENT AND CAREGIVER PANEL. THE CMGS CAN BE ACCESSED AT HTTPS://FRDAGUIDELINES.ORG AND INCLUDES TOPIC CHAPTERS, LAY SUMMARIES, RECOMMENDATIONS, BEST PRACTICE STATEMENTS, AND LINKS TO THE EVIDENCE TO RECOMMENDATION TABLES. ALSO, THERE ARE THREE NEW TOPICS: EMERGENCY MEDICINE, DIGITAL AND ASSISTIVE TECHNOLOGIES, AND MENTAL HEALTH. 5. DEVELOPMENT AND VALIDATION OF A POTENCY ASSAY FOR USE IN THE DEVELOPMENT OF GENE AND PROTEIN REPLACEMENT THERAPIES. 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. |
| FORM 990, PART III, LINE 4A | 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 2022 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT/GRANT-AWARDS A COMPLETE LIST OF 2022 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/RESEARCH/FARA-FUNDED-RESEARCH |
| 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 74,430. |
| 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 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. |