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FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2021

View the entire original 990 at ProPublica ↗

Organization
FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
Tax period
2021-01-01 to 2021-12-31
Filed
2022-08-05
IRS object ID
202232179349300603
Schema version
2021v4.2
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 ReturnHeader

FieldValueIRS element (for citing)
Return2022-08-05T05:41:17-05:00ReturnTs
Tax Period End2021-12-31TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

FieldValueIRS element (for citing)
Preparer Firm EIN871353108PreparerFirmEIN

Preparer Firm Name PreparerFirmName

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

Preparer US Address PreparerUSAddress

FieldValueIRS element (for citing)
Address Line1130 NORTH 18TH STREET SUITE 3000AddressLine1Txt
CityPHILADELPHIACityNm
State AbbreviationPAStateAbbreviationCd
ZIP191032757ZIPCd
FieldValueIRS element (for citing)
Return Type990ReturnTypeCd
Tax Period Begin2021-01-01TaxPeriodBeginDt

Filer Filer

FieldValueIRS element (for citing)
EIN522122720EIN

Business Name BusinessName

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

US Address USAddress

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

Business Officer BusinessOfficerGrp

FieldValueIRS element (for citing)
PersonJENNIFER FARMERPersonNm
Person TitleCHIEF EXECUTIVE OFFICERPersonTitleTxt
Phone4848796160PhoneNum
Signature2022-08-03SignatureDt
Discuss With Paid PreparerYes (1)DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

FieldValueIRS element (for citing)
Person FirstJENNIFERPersonFirstNm
Person LastFARMERPersonLastNm
FieldValueIRS element (for citing)
SSN999009999SSN

Preparer Person PreparerPersonGrp

FieldValueIRS element (for citing)
Preparer PersonHELEN M MARTINPreparerPersonNm
PTINP01330899PTIN
Phone2158818800PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

FieldValueIRS element (for citing)
Trusted Customer3TrustedCustomerCd
Authentication Assurance LevelAAL1AuthenticationAssuranceLevelCd
Identity Assurance LevelIAL1IdentityAssuranceLevelCd
FieldValueIRS element (for citing)
Tax2021TaxYr
Build TS2022-09-23 18:48:47ZBuildTS

Form 990 IRS990

FieldValueIRS element (for citing)
Principal OfficerJENNIFER FARMERPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1533 W UWCHLAN AVENUEAddressLine1Txt
CityDOWNINGTOWNCityNm
State AbbreviationPAStateAbbreviationCd
ZIP19335ZIPCd
FieldValueIRS element (for citing)
Gross Receipts$9,652,238GrossReceiptsAmt
Group Return For Affiliates0GroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.CUREFA.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1998FormationYr
Legal Domicile StateVALegalDomicileStateCd
Activity Or MissionTO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS.ActivityOrMissionDesc
Voting Members Governing Body18VotingMembersGoverningBodyCnt
Voting Members Independent16VotingMembersIndependentCnt
Total Employee13TotalEmployeeCnt
Total Volunteers500TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm$0NetUnrelatedBusTxblIncmAmt
PY Contributions Grants$12,628,384PYContributionsGrantsAmt
CY Contributions Grants$7,683,701CYContributionsGrantsAmt
PY Program Service Revenue$0PYProgramServiceRevenueAmt
CY Program Service Revenue$0CYProgramServiceRevenueAmt
PY Investment Income$108,792PYInvestmentIncomeAmt
CY Investment Income$306,924CYInvestmentIncomeAmt
PY Other Revenue-$193,341PYOtherRevenueAmt
CY Other Revenue-$272,847CYOtherRevenueAmt
PY Total Revenue$12,543,835PYTotalRevenueAmt
CY Total Revenue$7,717,778CYTotalRevenueAmt
PY Grants And Similar Paid$6,348,843PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid$7,398,876CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members$0PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members$0CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid$995,045PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid$1,160,225CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns$0CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense$193,923CYTotalFundraisingExpenseAmt
PY Other Expenses$394,814PYOtherExpensesAmt
CY Other Expenses$552,566CYOtherExpensesAmt
PY Total Expenses$7,738,702PYTotalExpensesAmt
CY Total Expenses$9,111,667CYTotalExpensesAmt
PY Revenues Less Expenses$4,805,133PYRevenuesLessExpensesAmt
CY Revenues Less Expenses-$1,393,889CYRevenuesLessExpensesAmt
Total Assets BOY$9,314,067TotalAssetsBOYAmt
Total Assets EOY$7,478,784TotalAssetsEOYAmt
Total Liabilities BOY$608,696TotalLiabilitiesBOYAmt
Total Liabilities EOY$283,508TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$8,705,371NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$7,195,276NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTO MARSHAL AND FOCUS THE RESOURCES AND RELATIONSHIPS NEEDED TO CURE FA BY RAISING FUNDS FOR RESEARCH, PROMOTING PUBLIC AWARENESS AND ALIGNING SCIENTISTS, PATIENTS, CLINICIANS, GOVERNMENT AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS.MissionDesc
Significant New Program Srvc0SignificantNewProgramSrvcInd
Significant Change0SignificantChangeInd
Expense$7,072,712ExpenseAmt
Grant$6,519,272GrantAmt
DescRESEARCH AND GRANT PROGRAMFARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2021, FARA AWARDED OVER $6.5 MILLION IN RESEARCH FUNDING. THIS INCLUDED MORE THAN 37 ACTIVE RESEARCH PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AS WELL AS SUPPORT FOR INSTITUTIONAL BASED RESEARCH AND FARA DIRECTED PROJECTS. FIFTEEN NEW GRANTS WERE FUNDED AFTER PEER REVIEW THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AND TWENTY-TWO APPROVED IN PREVIOUS YEARS RECEIVED CONTINUED FUNDING. SIX OF THE NEW GRANTS WERE AWARDED TO INVESTIGATORS NEW TO FA RESEARCH, INCLUDING 4 JUNIOR INVESTIGATORS. RESEARCHERS IN 9 COUNTRIES ARE RECEIVING RESEARCH FUNDING FROM FARA. 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, WE ARE 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. FARA DIRECTED PROJECTS ARE RESEARCH INITIATIVES IDENTIFIED AND LEAD BY FARA'S SCIENTIFIC ADVISORY BOARD AND STAFF. ALL OF THESE RESEARCH PROJECTS ARE HIGH PRIORITY AS THEY AIM TO PROVIDE RESEARCH RESOURCES, ADDRESS SPECIFIC GAPS IN KNOWLEDGE OR DEEPEN OUR UNDERSTANDING OF DISEASE MECHANISM, PATHOLOGY, AND PROGRESSION AND DISCOVERY OF INNOVATIVE APPROACHES TO THERAPY. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PATHE 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. FARA HAS MAINTAINED THIS FUNDING PARTNERSHIP WITH THE CUREFA FOUNDATION (ESTABLISHED BY THE HAMILTON AND FINNERAN FAMILIES) TO ADVANCE RESEARCH THROUGH THE COE. 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 COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. OVER THE PAST EIGHT YEARS, THE COE REACHED SEVERAL SIGNIFICANT RESEARCH MILESTONES WITH THE DISCOVERY OF POSSIBLE TREATMENT CANDIDATES, THE STUDY OF NEW BIOMARKERS TO MEASURE THE DISEASE, AND LAUNCH OF PROMISING NEUROLOGIC AND CARDIAC CLINICAL TRIALS AND STUDIES. FUNDING PROVIDED BY THE COE ENABLED EARLY RESEARCH FINDINGS WHICH HAS ALLOWED INVESTIGATORS TO APPLY FOR AND RECEIVE LARGER GRANTS FROM THE NATIONAL INSTITUTES OF HEALTH TO CONTINUE TO EXPAND THIS IMPORTANT WORK. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARDTHE 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. THE LEADER OF THE ACCELERATOR, VAMSI MOOTHA, A HOWARD HUGHES MEDICAL INSTITUTE INVESTIGATOR, HAS SEVERAL LINES OF FA RESEARCH UNDERWAY INCLUDING DRUG DISCOVERY THROUGH IDENTIFICATION OF CHEMICAL AND GENETIC MODIFIERS OF FA, AND HYPOXIA-INSPIRED RESEARCH BASED ON PRIOR FINDINGS THAT LIMITED OXYGEN IN CELLS, OR HYPOXIA, REJUVENATES CELLS THAT LACK FRATAXIN. GARY RUVKUN, A PROFESSOR OF GENETICS AT HARVARD MEDICAL SCHOOL AND MASSACHUSETTS GENERAL HOSPITAL, LEADS A TEAM USING SIMPLE MODEL SYSTEM TO TEST DIFFERENT MOLECULES FOR THEIR ABILITY TO RESCUE FRATAXIN-DEFICIENT CELLS. DAVID LIU, WHO IS ALSO A HOWARD HUGHES MEDICAL INSTITUTE INVESTIGATOR, HAS A TEAM APPLYING NEW GENE EDITING TECHNOLOGIES TO DIRECTLY CORRECT THE GENETIC CAUSES OF FRIEDREICH'S ATAXIA. IN 2021, THE SEIDMAN LAB JOINED THE FA ACCELERATOR. LED BY CHRISTINE AND JONATHAN SEIDMAN AT THE HARVARD MEDICAL SCHOOL AND BRIGHAM AND WOMEN'S HOSPITAL, THE SEIDMAN LAB WILL FOCUS ON RESEARCH TO UNDERSTAND THE MECHANISMS OF CARDIOMYOPATHY IN FA.FARA DIRECTED RESEARCHIN 2021, FARA FUNDED DIRECTED RESEARCH PROGRAMS INCLUDING: 1. MAINTAINING A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://SITES.UAB.EDU/THENAPIERALALAB/FRDA-CELL-LINE-REPOSITORY/ 2. TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM ESTABLISHED IN 2020, IS 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 INITIATED ENROLLMENT IN 2021. THE GOAL IS TO ENROLL 200 INDIVIDUALS WITH FA AND 100 MATCHED CONTROLS AND CONDUCT NEUROIMAGING OF THE BRAIN AND SPINAL CORD, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS 3. FOSTERING A COLLABORATIVE EFFORT BETWEEN UNIVERSITY OF OKLAHOMA, UNIVERSITY OF ALABAMA, 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 IN FA, NEW GUIDELINES ARE EXPECTED TO BE PUBLISHED IN 2022. 5. INITIATING 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).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 2021 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT-AWARDSA COMPLETE LIST OF 2021 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/SCIENTIFIC-NEWS/FUNDED-RESEARCHDesc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$1,087,755ExpenseAmt
Grant$879,604GrantAmt
DescCLINICAL RESEARCH INFRASTRUCTUREIN ADDITION TO RESEARCH GRANTS, FARA FUNDS THE ONGOING DEVELOPMENT OF DOMAIN RESOURCES IN THE FORM OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES CAN INCLUDE THINGS 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.ORG/REGISTRY. COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): THE CCRN IS AN INTERNATIONAL NETWORK OF 13 CLINICAL RESEARCH CENTERS (UNITED STATES, CANADA, AUSTRALIA, NEW ZEALAND) 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. IN 2021, A NEW CLINIC SITE IN NEW DEHLI, INDIA WAS ADDED TO THE NETWORK. 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. LONGITUDINAL DATA (USUALLY ABOUT 10 YEARS) ON INDIVIDUALS WITH A DISEASE THAT DESCRIBES AND QUANTIFIES THE PROGRESSION OF THE DISEASE ALONG WITH THE SYMPTOMS AND MANIFESTATIONS OF THE DISEASE. NATURAL HISTORY CAN SOMETIMES SERVE AS THE BASIS FROM WHICH MEASUREMENTS CAN BE MADE TO DETERMINE EFFECTS OF NEW TREATMENTS, DRUGS OR INTERVENTIONS.CLINICAL OUTCOME MEASURES OR FUNCTIONAL PERFORMANCE TESTS (E.G., TIMED PEGBOARD OR WALK TESTS, VISION, HEARING OR SPEECH TESTS) ARE ASSESSED TO QUANTIFY HOW MUCH CHANGE TAKES PLACE IN A SPECIFIC AMOUNT OF TIME AND ARE USED IN CLINICAL TRIALS TO MEASURE WHETHER A DRUG IS ALTERING THE COURSE OF THE DISEASE.BIOMARKERS: ANYTHING THAT CAN BE USED AS AN INDICATOR OF A PARTICULAR DISEASE STATE - USUALLY PROTEINS, ENZYMES, GENETIC VARIANTS, IMAGING (MRI, CT OR PET SCANS). THE CCRN AND FACOMS COLLECT BLOOD AND TISSUE SAMPLES FOR BIOMARKER DISCOVERY. BIOMARKERS CAN BE USED TO ASSESS RISK OF DISEASE, DIAGNOSIS, OR OUTCOMES. USE OF BIOMARKERS IN DRUG DEVELOPMENT IS ESSENTIAL BECAUSE BIOMARKERS CAN PROVIDE EVIDENCE OF BIOLOGICAL ACTIVITY, POTENTIALLY DEMONSTRATING THERAPEUTIC BENEFIT MORE QUICKLY THAN TRADITIONAL OUTCOME MEASURES. BIOREPOSITORY: A REPOSITORY OF STORED BIOLOGICAL MATERIALS SUCH AS BLOOD SAMPLES, DNA, ORGANS, AND TISSUES (SUCH AS SKIN, MUSCLE, HEART) THAT CAN BE USED FOR RESEARCH.THROUGH THE CCRN IN FA WE HAVE COLLECTED NATURAL HISTORY DATA (ONGOING) IN MORE THAN 1,100 INDIVIDUALS WITH FA, 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 MULTIPLE CLINICAL TRIALS INCLUDING A FEW THAT WERE DESIGNED AND CONDUCTED SOLELY THROUGH NETWORK SITES. CRITICAL PATH INSTITUTE DATA COLLABORATION PROJECTIN 2017, FARA INITIATED A PROJECT WITH CRITICAL PATH INSTITUTE'S (C-PATH) DATA COLLABORATION CENTER (DCC) TO DEVELOP AN AGGREGATED DATABASE OF CLINICAL DATA FOR FA. SIX DE-IDENTIFIED DATASETS FROM PREVIOUS CLINICAL TRIALS AND THE CCRN FACOMS DATASETS HAVE BEEN AGGREGATED INTO A SINGLE DATABASE (FA-ICD) IN A SCIENTIFICALLY RIGOROUS MANNER. AS OF DECEMBER 31, 2021, THIS DATA WAS SHARED WITH >20 RESEARCH ORGANIZATIONS (ACADEMIC AND INDUSTRY) TO FURTHER UNDERSTAND THE CLINICAL PHENOTYPE, NATURAL HISTORY, OUTCOME MEASURES AND TO ASSIST IN DESIGNING CLINICAL TRIALS. THE FA-ICD IS ALSO A PART OF THE RARE DISEASE CURES ACCELERATOR DATA AND ANALYTICS PLATFORM (COLLABORATIVE PLATFORM ESTABLISHED BY C-PATH, NORD AND FDA) WHERE THERE IS BETTER SEARCH AND ANALYTIC FUNCTIONS AND THE ABILITY TO LOOK AT FA DATA SET IN COMBINATION WITH DATA FROM OTHER DISEASES.ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2021 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG/FINANCIALSDesc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$338,711ExpenseAmt
DescEDUCATION, 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 SUCH AS GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2021 NATIONAL ATAXIA AWARENESS DAY (S.RES 339) AND HOSTING THE THIRD UNITED AGAINST ATAXIA HILL DAY. IN 2021, 240 PEOPLE REGISTERED FOR UNITED AGAINST ATAXIA HILL DAY, RESULTING IN 100 CONGRESSIONAL MEETINGS COVERING 44 STATES. THE PRIMARY ASK WAS TO ADD "HEREDITARY ATAXIA" TO THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE, WHICH WOULD PROVIDE ADDITIONAL FUNDING FOR ATAXIA RESEARCHERS. FARA ALSO SUPPORTED THE ACT FOR ALS WHICH PROMISED TO BRING NEW FEDERAL RESOURCES TO ALL RARE DEGENERATIVE CONDITIONS AND WHICH WAS SIGNED INTO LAW ON DEC 23, 2021. (PUBLIC LAW NO: 118-79)THE FARA AMBASSADOR PROGRAM, WHICH WAS LAUNCHED IN 2011 WITH APPROXIMATELY 20 PARTICIPANTS, HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2021. THE PROGRAM NOW INCLUDES MORE THAN 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. 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 BY SERVING ON PATIENT PANELS AT 15 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 2021. EARLY IN THE YEAR, FARA LAUNCHED A MONTHLY 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 NINE MINUTES OF SCIENCE VIDEOS BY THE END OF 2021. 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 SEPTEMBER, SELF-PACED EDUCATION FOR GENE THERAPY MODULES WERE RELEASED. BACKGROUND CONCEPTS, INFORMED CONSENT, AND FACILITATED DECISION-MAKING WERE COVERED IN A WHITEBOARD VIDEO AND IN ONLINE MODULES FOR SELF-DIRECTED LEARNING. THROUGHOUT THE YEAR INFORMATIONAL WEBINARS WERE PRESENTED ON THE FA TREATMENT PIPELINE AND CLINICAL RESEARCH STUDIES.Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

FieldValueIRS element (for citing)
Expense$177,445ExpenseAmt
DescWORKSHOPS, SYMPOSIA, & CONFERENCESFARA HOSTED A HYBRID IN-PERSON AND VIRTUAL SINGLE-DAY EDUCATIONAL SYMPOSIUM FOR >200 PATIENTS AND CAREGIVERS IN KING OF PRUSSIA, PA (OCTOBER 10, 2021). 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.Desc
FieldValueIRS element (for citing)
Total Other Prog Srvc Expense$177,445TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses$8,676,623TotalProgramServiceExpensesAmt
Described In Section501c3Yes (1)DescribedInSection501c3Ind
Schedule B RequiredYes (1)ScheduleBRequiredInd
Political Campaign Acty0PoliticalCampaignActyInd
Lobbying ActivitiesYes (1)LobbyingActivitiesInd
Subject To Proxy Tax0SubjectToProxyTaxInd
Donor Advised Fund0DonorAdvisedFundInd
Conservation Easements0ConservationEasementsInd
Collections Of Art0CollectionsOfArtInd
Credit Counseling0CreditCounselingInd
Donor Rstr Or Quasi Endowments0DonorRstrOrQuasiEndowmentsInd
Report Land Building EquipmentYes (1)ReportLandBuildingEquipmentInd
Report Investments Other Sec0ReportInvestmentsOtherSecInd
Report Program Related Invst0ReportProgramRelatedInvstInd
Report Other Assets0ReportOtherAssetsInd
Report Other Liabilities0ReportOtherLiabilitiesInd
Include FIN48 FootnoteYes (1)IncludeFIN48FootnoteInd
Independent Audit Fincl StmtYes (1)IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt0ConsolidatedAuditFinclStmtInd
School Operating0SchoolOperatingInd
Foreign OfficeYes (1)ForeignOfficeInd
Foreign ActivitiesYes (1)ForeignActivitiesInd
More Than5000 K To OrgYes (1)MoreThan5000KToOrgInd
More Than5000 K To Individuals0MoreThan5000KToIndividualsInd
Professional Fundraising0ProfessionalFundraisingInd
Fundraising ActivitiesYes (1)FundraisingActivitiesInd
Gaming Activities0GamingActivitiesInd
Operate Hospital0OperateHospitalInd
Grants To OrganizationsYes (1)GrantsToOrganizationsInd
Grants To Individuals0GrantsToIndividualsInd
Schedule J RequiredYes (1)ScheduleJRequiredInd
Tax Exempt Bonds0TaxExemptBondsInd
Engaged In Excess Benefit Trans0EngagedInExcessBenefitTransInd
PY Excess Benefit Trans0PYExcessBenefitTransInd
Loan Outstanding0LoanOutstandingInd
Grant To Related Person0GrantToRelatedPersonInd
Business Rln With Org Mem0BusinessRlnWithOrgMemInd
Business Rln With Fam Mem0BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent0BusinessRlnWith35CtrlEntInd
Deductible Non Cash ContriYes (1)DeductibleNonCashContriInd
Deductible Art Contribution0DeductibleArtContributionInd
Terminate Operations0TerminateOperationsInd
Partial Liquidation0PartialLiquidationInd
Disregarded Entity0DisregardedEntityInd
Related Entity0RelatedEntityInd
Related Organization Ctrl Ent0RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org0TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp0ActivitiesConductedPrtshpInd
Schedule O RequiredYes (1)ScheduleORequiredInd
IRP Document1IRPDocumentCnt
IRP Document W2 G0IRPDocumentW2GCnt
Backup Wthld ComplianceYes (1)BackupWthldComplianceInd
Employee13EmployeeCnt
Employment Tax Returns FiledYes (1)EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit0UnrelatedBusIncmOverLimitInd
Foreign Financial Account0ForeignFinancialAccountInd
Prohibited Tax Shelter Trans0ProhibitedTaxShelterTransInd
Taxable Party Notification0TaxablePartyNotificationInd
Nondeductible Contributions0NondeductibleContributionsInd
Quid Pro Quo ContributionsYes (1)QuidProQuoContributionsInd
Quid Pro Quo Contri DisclYes (1)QuidProQuoContriDisclInd
Form8282 Property Disposed Of0Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct0RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct0PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services0IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt0SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc0SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VIYes (X)InfoInScheduleOPartVIInd
Governing Body Voting Members18GoverningBodyVotingMembersCnt
Independent Voting Member16IndependentVotingMemberCnt
Family Or Business Rln0FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties0DelegationOfMgmtDutiesInd
Change To Org Documents0ChangeToOrgDocumentsInd
Material Diversion Or Misuse0MaterialDiversionOrMisuseInd
Members Or Stockholders0MembersOrStockholdersInd
Election Of Board Members0ElectionOfBoardMembersInd
Decisions Subject To Approva0DecisionsSubjectToApprovaInd
Minutes Of Governing BodyYes (1)MinutesOfGoverningBodyInd
Minutes Of CommitteesYes (1)MinutesOfCommitteesInd
Officer Mailing Address0OfficerMailingAddressInd
Local Chapters0LocalChaptersInd
Form990 Provided To Gvrn BodyYes (1)Form990ProvidedToGvrnBodyInd
Conflict Of Interest PolicyYes (1)ConflictOfInterestPolicyInd
Annual Disclosure Covered PrsnYes (1)AnnualDisclosureCoveredPrsnInd
Regular Monitoring EnfrcYes (1)RegularMonitoringEnfrcInd
Whistleblower PolicyYes (1)WhistleblowerPolicyInd
Document Retention PolicyYes (1)DocumentRetentionPolicyInd
Compensation Process CEOYes (1)CompensationProcessCEOInd
Compensation Process OtherYes (1)CompensationProcessOtherInd
Investment In Joint Venture0InvestmentInJointVentureInd
States Where Copy Of Return Is FldALStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldAZStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldARStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldCTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldFLStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldGAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldILStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldKYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMEStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMSStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMOStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNJStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNMStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNYStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldNDStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOHStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldOKStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldORStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldPAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldRIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldSCStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldTNStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldUTStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldVAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWAStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWVStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldWIStatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is FldMAStatesWhereCopyOfReturnIsFldCd
Own WebsiteYes (X)OwnWebsiteInd
Upon RequestYes (X)UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

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

US Address USAddress

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

Form990 Part VII Section A Form990PartVIISectionAGrp (21 entries)

TitleTitleTxtAverage Hours Per WeekAverageHoursPerWeekRtHighest Compensated EmployeeHighestCompensatedEmployeeIndReportable Comp From OrgReportableCompFromOrgAmtReportable Comp From Rltd OrgReportableCompFromRltdOrgAmtOther CompensationOtherCompensationAmtOfficerOfficerIndIndividual Trustee Or DirectorIndividualTrusteeOrDirectorInd
BARBARA A TATE
CHIEF SCIENTIFIC OFFICER40.00Yes (X)$250,000$0$6,439
JENNIFER M FARMER
CHIEF EXECUTIVE OFFICER40.00$150,000$0$5,123Yes (X)
RONALD BARTEK
PRESIDENT/DIRECTOR40.00$110,000$0$3,734Yes (X)Yes (X)
ELISABETTA SORAGNI
DIRECTOR OF RESEARCH40.00Yes (X)$103,000$0$13,380
RUTH ACTON
TREASURER/DIR OF FINANCE ADMIN, HR25.00$43,050$0$12,185Yes (X)Yes (X)
PAUL AVERY
CHAIRMAN/ DIRECTOR10.00$0$0$0Yes (X)Yes (X)
MARILYN E DOWNING
SECRETARY/ DIRECTOR10.00$0$0$0Yes (X)Yes (X)
DR SANJAY BIDICHANDANI
DIRECTOR10.00$0$0$0Yes (X)
BRIGID BRENNAN
DIRECTOR/ GENERAL COUNSEL20.00$0$0$0Yes (X)
THOMAS BRENNINKMEIJER
DIRECTOR10.00$0$0$0Yes (X)
ALEX FIELDING
DIRECTOR10.00$0$0$0Yes (X)
JENNIFER GOOD
DIRECTOR10.00$0$0$0Yes (X)
THOMAS HAMILTON
DIRECTOR10.00$0$0$0Yes (X)
DR HOLLY HEDRICK
DIRECTOR10.00$0$0$0Yes (X)
DEREK G HENNECKE
DIRECTOR10.00$0$0$0Yes (X)
DR STEVE KLASKO
DIRECTOR10.00$0$0$0Yes (X)
DR KATHY MATHEWS
DIRECTOR10.00$0$0$0Yes (X)
DR JAMES MCARTHUR
DIRECTOR10.00$0$0$0Yes (X)
TONY PLOHOROS
DIRECTOR10.00$0$0$0Yes (X)
PATRICK RITSCHEL
DIRECTOR10.00$0$0$0Yes (X)
DR JAMES R RUSCHE
DIRECTOR10.00$0$0$0Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$656,050TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$40,861TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed0FormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (1)TotalCompGreaterThan150KInd
Compensation From Other Srcs0CompensationFromOtherSrcsInd
Cntrct Rcvd Greater Than100 K0CntrctRcvdGreaterThan100KCnt
Federated Campaigns$9,288FederatedCampaignsAmt
Fundraising$3,415,421FundraisingAmt
Government Grants$212,315GovernmentGrantsAmt
All Other Contributions$4,046,677AllOtherContributionsAmt
Noncash Contributions$457,781NoncashContributionsAmt
Total Contributions$7,683,701TotalContributionsAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$47,170TotalRevenueColumnAmt
Exclusion$47,170ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$1,404,133SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$1,144,379SecuritiesAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$259,754SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column$259,754TotalRevenueColumnAmt
Exclusion$259,754ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$517,234FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$3,415,421ContriRptFundraisingEventAmt
Fundraising Direct Expenses$790,081FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column-$272,847TotalRevenueColumnAmt
Exclusion-$272,847ExclusionAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$7,717,778TotalRevenueColumnAmt
Related Or Exempt Func Income$0RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue$0UnrelatedBusinessRevenueAmt
Exclusion$34,077ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$5,509,037TotalAmt
Program Services$5,509,037ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$1,889,839TotalAmt
Program Services$1,889,839ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$324,092TotalAmt
Program Services$212,690ProgramServicesAmt
Management And General$65,387ManagementAndGeneralAmt
Fundraising$46,015FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$678,343TotalAmt
Program Services$604,783ProgramServicesAmt
Management And General$51,495ManagementAndGeneralAmt
Fundraising$22,065FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$21,914TotalAmt
Program Services$13,569ProgramServicesAmt
Management And General$1,284ManagementAndGeneralAmt
Fundraising$7,061FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$67,130TotalAmt
Program Services$36,401ProgramServicesAmt
Management And General$5,400ManagementAndGeneralAmt
Fundraising$25,329FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$68,746TotalAmt
Program Services$54,635ProgramServicesAmt
Management And General$7,783ManagementAndGeneralAmt
Fundraising$6,328FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$18,200TotalAmt
Management And General$18,200ManagementAndGeneralAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$207,357TotalAmt
Program Services$195,461ProgramServicesAmt
Management And General$8,116ManagementAndGeneralAmt
Fundraising$3,780FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$10TotalAmt
Fundraising$10FundraisingAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$25,748TotalAmt
Program Services$7,169ProgramServicesAmt
Management And General$4,667ManagementAndGeneralAmt
Fundraising$13,912FundraisingAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$37,357TotalAmt
Program Services$24,905ProgramServicesAmt
Management And General$6,948ManagementAndGeneralAmt
Fundraising$5,504FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$79,359TotalAmt
Program Services$37,806ProgramServicesAmt
Management And General$41,553ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$15,950TotalAmt
Management And General$11,993ManagementAndGeneralAmt
Fundraising$3,957FundraisingAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
SUBSCRIPTIONS & LICENSI$94,983$81,879$4,559$8,545
MISCELLANEOUS$32,003$144$31,859
FACILITIES & EQUIPMENT$15,276$2,887$12,134$255
CREDIT CARD & BANK FEES$13,569$60$189$13,320

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$12,754TotalAmt
Program Services$5,502ProgramServicesAmt
Management And General$1,269ManagementAndGeneralAmt
Fundraising$5,983FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$9,111,667TotalAmt
Program Services$8,676,623ProgramServicesAmt
Management And General$241,121ManagementAndGeneralAmt
Fundraising$193,923FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$3,850,878BOYAmt
EOY$3,334,786EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
EOY$1,807,813EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$277,880BOYAmt
EOY$259,819EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$42,086BOYAmt
EOY$94,042EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$7,135LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$7,135LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

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

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$5,137,765BOYAmt
EOY$1,976,866EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

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

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$9,314,067BOYAmt
EOY$7,478,784EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$508,696BOYAmt
EOY$261,148EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$100,000BOYAmt
EOY$22,360EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$608,696BOYAmt
EOY$283,508EOYAmt
FieldValueIRS element (for citing)
Organization Follows FASB117Yes (X)OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,124,902BOYAmt
EOY$4,608,013EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

FieldValueIRS element (for citing)
BOY$4,580,469BOYAmt
EOY$2,587,263EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,705,371BOYAmt
EOY$7,195,276EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$9,314,067BOYAmt
EOY$7,478,784EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss-$1,393,889ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst-$100,126NetUnrlzdGainsLossesInvstAmt
Investment Expense-$17,664InvestmentExpenseAmt
Other Changes In Net Assets$1,584OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or Review0AccountantCompileOrReviewInd
FS AuditedYes (1)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Separate Basis Fincl StmtYes (X)SeparateBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (1)AuditCommitteeInd
Federal Grant Audit Required0FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,518,776CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$7,662,625CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,146,206CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$12,628,384CurrentTaxYearMinus1YearAmt
Current Tax Year$7,808,772CurrentTaxYearAmt
Total$42,764,763TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$7,518,776CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$7,662,625CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$7,146,206CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$12,628,384CurrentTaxYearMinus1YearAmt
Current Tax Year$7,808,772CurrentTaxYearAmt
Total$42,764,763TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$6,952,524SubstantialContributorsTotAmt
Public Support Total170$35,812,239PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$37,283CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$42,296CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$45,345CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$38,997CurrentTaxYearMinus1YearAmt
Current Tax Year$47,170CurrentTaxYearAmt
Total$211,091TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year$87,760CurrentTaxYearAmt
Total$87,760TotalAmt
FieldValueIRS element (for citing)
Total Support$43,063,614TotalSupportAmt
Public Support CY1700.83160PublicSupportCY170Pct
Public Support PY1700.71800PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$3,570FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$16,117FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$19,687FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$9,577,658FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$9,597,345FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$629,867FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$157,467FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

FieldValueIRS element (for citing)
Filing Organizations Total$0FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$481,734CurrentYearMinus3Amt
Current Year Minus2$567,238CurrentYearMinus2Amt
Current Year Minus1$564,107CurrentYearMinus1Amt
Current Year$629,867CurrentYearAmt
Total$2,242,946TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$3,364,419LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$8,925CurrentYearMinus3Amt
Current Year Minus2$12,259CurrentYearMinus2Amt
Current Year Minus1$9,997CurrentYearMinus1Amt
Current Year$19,687CurrentYearAmt
Total$50,868TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$120,434CurrentYearMinus3Amt
Current Year Minus2$141,810CurrentYearMinus2Amt
Current Year Minus1$141,027CurrentYearMinus1Amt
Current Year$157,467CurrentYearAmt
Total$560,738TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$841,107GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$5,326CurrentYearMinus3Amt
Current Year Minus2$7,316CurrentYearMinus2Amt
Current Year Minus1$5,966CurrentYearMinus1Amt
Current Year$3,570CurrentYearAmt
Total$22,178TotalAmt

Schedule D IRS990ScheduleD

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$7,135OtherCostOrOtherBasisAmt
Depreciation$7,135DepreciationAmt
Book Value$0BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$0TotalBookValueLandBuildingsAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$8,486,069TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst-$100,126NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$96,000DonatedServicesAndUseFcltsAmt
Other Revenue$790,081OtherRevenueAmt
Revenue Not Reported$785,955RevenueNotReportedAmt
Revenue Subtotal$7,700,114RevenueSubtotalAmt
Investment Expenses Not Incld$17,664InvestmentExpensesNotIncldAmt
Revenue Not Reported Fincl Stmt$17,664RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990$7,717,778TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$9,996,164TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$96,000DonatedServicesUseFcltsAmt
Other Expenses Included$790,081OtherExpensesIncludedAmt
Expenses Not Reported$886,081ExpensesNotReportedAmt
Expenses Subtotal$9,110,083ExpensesSubtotalAmt
Other Expenses Not Included$1,584OtherExpensesNotIncludedAmt
Expenses Not Rpt Fincl Stmt$1,584ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990$9,111,667TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
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, 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, 2021 AND 2020.
PART XI, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENTS EXPENSE 790,081.
PART XII, LINE 2D - OTHER ADJUSTMENTS:SPECIAL EVENTS EXPENSE 790,081.
PART XII, LINE 4B - OTHER ADJUSTMENTS:PRIOR YEAR GRANT REFUNDS NETTED AGAINST EXPENSE ON FINANCIAL STATEMENTS 1,584.

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)

RegionRegionTxtOfficesOfficesCntEmployeeEmployeeCntType Of Activities ConductedTypeOfActivitiesConductedTxtSpecific Services ProvidedSpecificServicesProvidedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
EUROPE01GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$1,227,516
EAST ASIA AND THE PACIFIC00GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$605,388
SOUTH AMERICA00GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$46,935
CANADA00GRANTS TO RECIPIENTS LOCATED IN REGIONRESEARCH AND GRANT PROGRAM$10,000
FieldValueIRS element (for citing)
Subtotal Offices0SubtotalOfficesCnt
Subtotal Employees1SubtotalEmployeesCnt
Continuation Total Office0ContinuationTotalOfficeCnt
Continuation Total Employee0ContinuationTotalEmployeeCnt
Total Office0TotalOfficeCnt
Total Employee1TotalEmployeeCnt
Subtotal Spent$1,889,839SubtotalSpentAmt
Continuation Spent$0ContinuationSpentAmt
Total Spent$1,889,839TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (19 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtNon Cash AssistanceNonCashAssistanceAmt
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$85,645WIRE$0
EUROPEMEDICAL RESEARCH$82,590WIRE$0
EUROPEMEDICAL RESEARCH$150,000WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$265,990WIRE$0
EUROPEMEDICAL RESEARCH$236,250WIRE$0
EUROPEMEDICAL RESEARCH$148,887WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$52,253WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$10,500WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$150,000WIRE$0
EUROPEMEDICAL RESEARCH$82,901WIRE$0
SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR,MEDICAL RESEARCH$46,935WIRE$0
NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES)MEDICAL RESEARCH$10,000WIRE$0
EUROPEMEDICAL RESEARCH$35,000WIRE$0
EUROPEMEDICAL RESEARCH$59,732WIRE$0
EUROPEMEDICAL RESEARCH$99,742WIRE$0
EUROPEMEDICAL RESEARCH$125,000WIRE$0
EUROPEMEDICAL RESEARCH$73,236WIRE$0
EAST ASIA AND THE PACIFICMEDICAL RESEARCH$41,000WIRE$0
EUROPEMEDICAL RESEARCH$134,178WIRE$0
FieldValueIRS element (for citing)
Total501c3 Org17Total501c3OrgCnt
Total Other Org2TotalOtherOrgCnt
Transfer To Foreign Corp0TransferToForeignCorpInd
Interest In Foreign Trust0InterestInForeignTrustInd
Foreign Corp Ownership0ForeignCorpOwnershipInd
Passive Foreign Investmest Co0PassiveForeignInvestmestCoInd
Foreign Partnership0ForeignPartnershipInd
Boycott Countries0BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
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

FieldValueIRS element (for citing)
Event1FARA ENERGY BALLEvent1Nm
Gross Receipts Event1$1,740,051GrossReceiptsEvent1Amt
Charitable Contri Event1$1,384,581CharitableContriEvent1Amt
Gross Revenue Event1$355,470GrossRevenueEvent1Amt
Rent Facility Costs Event1$111,416RentFacilityCostsEvent1Amt
Entertainment Event1$8,500EntertainmentEvent1Amt
Other Direct Expenses Event1$240,548OtherDirectExpensesEvent1Amt
Event2RIDEATAXIA PHILAEvent2Nm
Gross Receipts Event2$612,394GrossReceiptsEvent2Amt
Charitable Contri Event2$597,169CharitableContriEvent2Amt
Gross Revenue Event2$15,225GrossRevenueEvent2Amt
Other Direct Expenses Event2$60,802OtherDirectExpensesEvent2Amt
Other Events Total12OtherEventsTotalCnt
Gross Receipts Other Events$1,580,210GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$1,433,671CharitableContriOtherEventsAmt
Gross Revenue Other Events$146,539GrossRevenueOtherEventsAmt
Oth Direct Expnss Other Events$368,815OthDirectExpnssOtherEventsAmt
Gross Receipts Total$3,932,655GrossReceiptsTotalAmt
Charitable Contributions Tot$3,415,421CharitableContributionsTotAmt
Gross Revenue Total Events$517,234GrossRevenueTotalEventsAmt
Rent Fclty Costs Total Events$111,416RentFcltyCostsTotalEventsAmt
Entertainment Total Events$8,500EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events$670,165OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events$790,081DirectExpenseSummaryEventsAmt
Net Income Summary-$272,847NetIncomeSummaryAmt
FieldValueIRS element (for citing)
Individual With BooksFELICIA DEROSAIndividualWithBooksNm

Persons With Books US Address PersonsWithBooksUSAddress

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

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (25 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtNon Cash AssistanceNonCashAssistanceAmtPurpose Of GrantPurposeOfGrantTxtAddress Line2USAddress/AddressLine2Txt
CHILDREN'S HOSPITAL OF PHILADELPHIA
34TH ST CIVIC CENTER BLVDPHILADELPHIAPA19104231352166501(C)(3)$556,704$0MEDICAL RESEARCH
CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION
34TH ST CIVIC CENTER BLVDPHILADELPHIAPA19104232237932501(C)(3)$425,000$0MEDICAL RESEARCH
OHIO STATE UNIVERSITY
333 W 10TH AVECOLUMBUSOH43210316025986501(C)(3)$5,300$0MEDICAL RESEARCH
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES
10920 WILSHIRE BLVD 5TH FLOORLOS ANGELESCA90024956006143501(C)(3)$45,550$0MEDICAL RESEARCH
UNIVERSITY OF FLORIDA
DEPT OF NEUROLOGY L3-100 MCKNIGHTGAINESVILLEFL32611596002052501(C)(3)$168,440$0MEDICAL RESEARCHBRAIN INSTITUTE NEWELL DRIVE
UNIVERSITY OF ROCHESTER
515 HYLAN BUILDING RC BOX 270140ROCHESTERNY14627160743209501(C)(3)$333,963$0MEDICAL RESEARCH
ALBANY RESEARCH INSTITUTE
113 HOLLAND AVEALBANYNY12208141716021501(C)(3)$109,745$0MEDICAL RESEARCH
TRUSTREES OF THE UNIVERSITY OF PENNSYLVANIA
3451 WALNUT ST RM 310PHILADELPHIAPA19104231352685501(C)(3)$412,551$0MEDICAL RESEARCH
UNIVERSITY OF ALABAMA - BIRMINGHAM
1720 2ND AVE SBIRMINGHAMAL35294636005396501(C)(3)$150,000$0MEDICAL RESEARCH
NYU SCHOOL OF MEDICINE
550 1ST AVENUENEW YORKNY10016135562309501(C)(3)$25,000$0MEDICAL RESEARCH
WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY
1300 YORK AVENUE C-118NEW YORKNY10065131623978501(C)(3)$150,000$0MEDICAL RESEARCH
UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER
865 RESEARCH PARKWAY SUITE 450OKLAHOMA CITYOK73126731563627501(C)(3)$57,000$0MEDICAL RESEARCH
STANFORD UNIVERSITY
2770 SAND HILL ROADMENLO PARKCA94025941156365501(C)(3)$142,643$0MEDICAL RESEARCH
THE BROAD INSTITUTE
415 MAIN STREETCAMBRIDGEMA02142263428781501(C)(3)$1,591,000$0MEDICAL RESEARCH
UNIVERSITY OF CALIFORNIA DAVIS
1850 RESEARCH PARK DRIVEDAVISCA95618946036494501(C)(3)$225,000$0MEDICAL RESEARCH
UNIVERSITY OF PITTSBURGH
116 ATWOOD STREET SUITE 201PITTSBURGHPA15213250965591501(C)(3)$225,000$0MEDICAL RESEARCH
BURKE NEUROLOGICAL INSTITUTE
785 MAMARONECK AVENUEWHITE PLAINSNY10605133434924501(C)(3)$75,000$0MEDICAL RESEARCH
CYAGEN BIOMODELS LLC
2255 MARTIN AVE STE ESANTA CLARACA95050$20,455$0MEDICAL RESEARCH
MASSACHUSETTS GENERAL HOSPITAL
55 FRUIT STREETBOSTONMA02114041564655501(C)(3)$71,875$0MEDICAL RESEARCH
NATIONAL ATAXIA FOUNDATION
600 HIGHWAY 169 SOUTH SUITE 1725MINNEAPOLISMN55455410832903501(C)(3)$24,750$0MEDICAL RESEARCH
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO
9500 GILMAN DRIVELA JOLLACA92093956006144501(C)(3)$125,000$0MEDICAL RESEARCH
THE REGENTS OF THE UNIVERSITY OF MINNESOTA
200 SE OAK ST 600MINNEAPOLISMN55455416007513501(C)(3)$234,361$0MEDICAL RESEARCH
THOMAS JEFFERSON UNIVERSITY
1020 WALNUT STREETPHILADELPHIAPA19107232829095501(C)(3)$150,000$0MEDICAL RESEARCH
UNIVERSITY OF SOUTH FLORIDA FOUNDATION
4202 EAST FOWLER AVETAMPAFL33620590879015501(C)(3)$100,000$0MEDICAL RESEARCH
THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK
154 HAVEN AVENUE SECOND FLOORNEW YORKNY10032135598093501(C)(3)$75,000$0MEDICAL RESEARCH
FieldValueIRS element (for citing)
Total501c3 Org24Total501c3OrgCnt
Total Other Org1TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

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

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance Payment0SeverancePaymentInd
Supplemental Nonqual Rtr Plan0SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm0EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org0CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs0CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org0CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs0CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments0AnyNonFixedPaymentsInd
Initial Contract Exception0InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (2 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountBonus Related OrganizationsBonusRelatedOrganizationsAmtOther Compensation Filing OrgOtherCompensationFilingOrgAmtOther Compensation Rltd OrgsOtherCompensationRltdOrgsAmtDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
BARBARA A TATE
CHIEF SCIENTIFIC OFFICER$250,000$0$0$0$0$0$5,850$0$589$0$256,439$0$0$0
JENNIFER M FARMER
CHIEF EXECUTIVE OFFICER$150,000$0$0$0$0$0$4,500$0$623$0$155,123$0$0$0

Schedule M IRS990ScheduleM

Securities Publicly Traded SecuritiesPubliclyTradedGrp

FieldValueIRS element (for citing)
Non Cash CheckboxYes (X)NonCashCheckboxInd
Contribution10ContributionCnt
Noncash Contributions Rpt F990$457,781NoncashContributionsRptF990Amt
Method Of Determining RevenuesHI-LOW DATE OF GIFTMethodOfDeterminingRevenuesTxt
FieldValueIRS element (for citing)
Any Property That Must Be Held0AnyPropertyThatMustBeHeldInd
Review Process Unusual NC GiftsYes (1)ReviewProcessUnusualNCGiftsInd
Third Parties Used0ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, COLUMN (B):FormAndLineReferenceDesc
ExplanationTHE ORGANIZATION RECOGNIZES IN COLUMN B EACH UNIQUE NON-CASH CONTRIBUTION RECEIVED FROM A DONOR.ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (6 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART VI, SECTION B, LINE 11BCOPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING.
FORM 990, PART VI, SECTION B, LINE 12CALL NEW AND EXISTING BOARD MEMBERS ARE REQUIRED TO ANNUALLY REVIEW AND SIGN A CONFLICT OF INTEREST POLICY AND REPORT DISCLOSURES.
FORM 990, PART VI, SECTION B, LINE 15EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT, CEO, CSO AND DIRECTOR FINANCE ADMINISTRATION.
FORM 990, PART VI, SECTION C, LINE 19FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG FINANCIAL STATEMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FORM 1023 ARE AVAILABLE UPON REQUEST.
FORM 990, PART XI, LINE 9:PRIOR YEAR GRANT REFUNDS NETTED AGAINST EXPENSE ON FINANCIAL STATEMENTS 1,584.
FORM 990, PART XII, LINE 2CFARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS AND 990 PRIOR TO SHARING WITH THE FULL BOARD FOR A VOTE. ALL 990 INFORMATION IS VERIFIED FOR ACCURACY AND COMPLETENESS BY FARA'S DIRECTOR OF FINANCE, FARA'S VP OF FUNDRAISING AND COMMUNICATIONS AND FARA'S CEO. THE VERIFIED DRAFT IS REVIEWED BY THE FARA FINANCE COMMITTEE AND SUBMITTED TO THE FULL FARA BOARD OF DIRECTORS FOR REVIEW AND APPROVAL PRIOR TO FILING.