FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2014
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2014-01-01 to 2014-12-31
- Filed
- 2015-05-08
- IRS object ID
- 201521289349301712
- Schema version
- 2014v5.0
- 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 | 2015-05-08T13:35:40-05:00 | ReturnTs |
| Tax Period End | 2014-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 231518888 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MAILLIE LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 624 WILLOWBROOK LANE | AddressLine1Txt |
| City | WEST CHESTER | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19382 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2014-01-01 | 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 | EXECUTIVE DIRECTOR | PersonTitleTxt |
| Phone | 4848796160 | PhoneNum |
| Signature | 2015-04-20 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | EDWARD FRONCZKOWSKI CPA | PreparerPersonNm |
| PTIN | P01259092 | PTIN |
| Phone | 6106964353 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2014 | TaxYr |
| Build TS | 2016-03-07 17:11:31Z | 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 | $5,996,377 | 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 BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. | ActivityOrMissionDesc |
| Voting Members Governing Body | 16 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 15 | VotingMembersIndependentCnt |
| Total Employee | 6 | TotalEmployeeCnt |
| Total Volunteers | 350 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,852,500 | PYContributionsGrantsAmt |
| CY Contributions Grants | $4,958,831 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $59,864 | PYInvestmentIncomeAmt |
| CY Investment Income | $287,653 | CYInvestmentIncomeAmt |
| PY Other Revenue | $75,480 | PYOtherRevenueAmt |
| CY Other Revenue | -$3,737 | CYOtherRevenueAmt |
| PY Total Revenue | $3,987,844 | PYTotalRevenueAmt |
| CY Total Revenue | $5,242,747 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,806,246 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $4,113,902 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $451,977 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $462,636 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $96,708 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $211,229 | PYOtherExpensesAmt |
| CY Other Expenses | $233,456 | CYOtherExpensesAmt |
| PY Total Expenses | $3,469,452 | PYTotalExpensesAmt |
| CY Total Expenses | $4,809,994 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $518,392 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $432,753 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $3,688,078 | TotalAssetsBOYAmt |
| Total Assets EOY | $4,011,934 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $381,693 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $290,640 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $3,306,385 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $3,721,294 | 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, GOV'T AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $4,337,835 | ExpenseAmt |
| Grant | $4,103,902 | GrantAmt |
| Desc | RESEARCH & GRANT PROGRAM: FARA'S COMMITMENT TO FUNDING HIGH QUALITY RESEARCH PROJECTS THAT MOVE US CLOSER TO EFFECTIVE TREATMENTS CONTINUED AT AN ACCELERATED PACE IN 2014. IN TOTAL, FARA PROVIDED >$4M IN BASIC AND TRANSLATIONAL AND CLINICAL RESEARCH GRANTS, A NEW FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, SCIENTIFIC CONFERENCE SUPPORT AND CLINICAL RESEARCH INFRASTRUCTURE FUNDING. OVER THE PAST YEAR, >35 NEW LETTERS OF INTENT FOR FUNDING REQUESTS WERE SUBMITTED, 21 FULL APPLICATIONS WERE SUBMITTED AND AFTER RIGOROUS PEER REVIEW, 15 WERE DETERMINED MERITORIOUS AND AWARDED FUNDING IN 2014 AND EARLY 2015. IN ADDITION, BASED ON EXCELLENT PROGRESS, CONTINUATION FUNDING WAS PROVIDED FOR 14 PROJECTS, FOR A TOTAL OF 29 RESEARCH GRANTS AWARDED. FARA ALSO AWARDED TWO CONFERENCE GRANTS TO SUPPORT SCIENTIFIC MEETINGS WITH CONTENT FOCUSED ON FRIEDREICH'S ATAXIA. THESE FUNDED PROJECTS ADDRESS NUMEROUS IMPORTANT RESEARCH QUESTIONS THAT DIRECTLY TARGET FARA'S STRATEGIC RESEARCH INITIATIVES, INCLUDING EVALUATING OF MECHANISMS OF DISEASE, DRUG DISCOVERY, PRE-CLINICAL AND CLINICAL STUDIES OF LEAD CANDIDATES IN THE TREATMENT PIPELINE, ADVANCES IN GENE AND CELL THERAPY APPROACHES, ADVANCES IN DIFFERENTIATION OF INDUCED PLURIPOTENT STEM (IPS) CELL LINES FROM FA PATIENTS INTO SENSORY NEURONS AND CARDIOMYOCYTES, DEVELOPMENT OF NEW ANIMAL MODELS, CARDIAC RESEARCH AND EVALUATION OF NOVEL BIOMARKERS. SEVERAL ARE CO-FUNDED WITH OUR FRIEDREICH'S ATAXIA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA IS PROVIDING INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. NEW IN 2014 - FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA PAIN MARCH, FARA ANNOUNCED THE ESTABLISHMENT OF THE PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE. THE CENTER WAS LAUNCHED WITH A GIFT OF $3.25 MILLION (OVER 3 YEARS) PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES. THIS CENTER WILL HELP TO EXPEDITE BASIC SCIENCE AND DRUG DISCOVERY FINDINGS FOR NEW TREATMENTS, PROVIDE RESOURCES FOR CLINICAL RESEARCH AND CARE THAT WILL HELP TO INCREASE UNDERSTANDING OF THE DISEASE, AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FRIEDREICH'S ATAXIA. PROJECTS AND INVESTIGATORS BEING FUNDED INCLUDE DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- CLINICAL AND NEUROSCIENCE RESEARCH, DR, IAN BLAIR- METABOLIC BIOMARKERS, AND DR. KIM LIN- CARDIAC RESEARCH.A FEW HIGHLIGHTED NEW RESEARCH GRANTS:2014 KEITH MICHAEL ANDRUS MEMORIAL AWARD (FOR CARDIAC RESEARCH), TITLE: IDENTIFICATION OF THERAPEUTIC COMPOUNDS ON A CARDIAC DROSOPHILA MODEL OF FRIEDREICH'S ATAXIA, PRINCIPAL INVESTIGATOR, DR. VERONIQUE MONNIER (UNVERSITE' PARIS)DR. VERONIQUE MONNIER AND HER TEAM HAVE DEVELOPED A DROSOPHILA CARDIAC MODEL OF FRIEDREICH'S ATAXIA THAT RECAPITULATES THE DEFECTS OF CARDIAC FUNCTION OBSERVED IN PATIENTS AND FRDA MOUSE MODELS, IN PARTICULAR HEART DILATATION AND IMPAIRED SYSTOLIC FUNCTION. IN A RECENT PUBLICATION DESCRIBING THIS FRDA FLY MODEL, THEY SHOWED THAT METHYLENE BLUE, A CLINICALLY APPROVED DRUG, WAS ABLE TO PREVENT THE HEART DYSFUNCTION (TRICOIRE H, PALANDRI A, BOURDAIS A, CAMADRO JM, MONNIER V. HUMAN MOLECULAR GENETICS 23:968- 979, 2014). THE MAJOR GOAL OF THIS PROJECT IS TO USE THE DROSOPHILA CARDIAC MODEL TO IDENTIFY NEW THERAPEUTIC COMPOUNDS THROUGH A MEDIUM-SCALE UNBIASED DRUG SCREENING OF 1280 COMPOUNDS. CARDIAC IMAGING WILL BE PERFORMED IN VIVO TO SELECT COMPOUNDS THAT IMPROVE THE HEART FUNCTION OF THE FLY. THIS DRUG SCREEN HAS GREAT POTENTIAL FOR IDENTIFYING NOVEL COMPOUNDS THAT ARE LIKELY TO LEAD TO THERAPEUTIC INTERVENTIONS FOR FRDA. 2014 KYLE BRYANT TRANSLATIONAL RESEARCH AWARD, TITLE: SMALL MOLECULE INDUCED EXON SKIPPING OF MLH3 TO SLOW REPEAT EXPANSION IN AN FRDA MOUSEL MODEL, PRINCIPAL INVESTIGATOR, DR. EDWARD GRABCZYK, LOUSIANA STATE UNIVERSITY. DR. GRABCZYK FOUND THAT A PROTEIN CALLED MSH3 CAUSES GAA REPEATS IN THE FXN GENE TO EXPAND. HE THEN DISCOVERED THAT TRANSCRIPTION THROUGH THE REPEAT AND THE SEQUENTIAL ACTIONS OF SEVERAL DNA MISMATCH REPAIR PROTEINS CALLED MUTSBETA (MSH2/MSH3 HETERODIMER) AND THEN MUTLGAMMA (MLH1/MLH3 HETERODIMER) ARE LINKED TO CELL LOSS OR REPEAT EXPANSION IN FRDA PATIENT TISSUE SAMPLES. MUTLGAMMA IS THE PROTEIN COMPLEX THAT CUTS THE DNA IN THE REPEAT TO START THE EXPANSION. WITHOUT THE CUT, THERE IS NO EXPANSION. WHEN TREATING CELLS WITH SPLICE-SWITCHING OLIGONUCLEOTIDES (SSOS), THE REPEAT STOPS EXPANDING. DR. GRABCZYK WILL EXPLORE AND TEST THE USE SSOS TO BLOCK THIS EXPANSION IN MOUSE MODELS OF FA AS A FIRST STEP HEADING TO HUMAN TRIALS. TITLE: ACTIVATION OF FRATAXIN EXPRESSION BY DUPLEX RNA, PRINCIPAL INVESTIGATOR, DR. DAVID COREY,(UT SOUTHWESTERN DR. DAVID COREY DESIGNED DUPLEX RNAS TO RECOGNIZE THE REPEAT REGION IN FA AND POTENTIALLY INTERFERE WITH CHROMATIN CONTACTS THAT MIGHT CONTRIBUTE TO DECREASED TRANSCRIPTION. HE HAS DISCOVERED THAT INTRODUCTION OF THESE DUPLEX RNAS INTO FA-PATIENT DERIVED CELLS CAUSED AN INCREASE OF FXN MRNA AND PROTEIN TO LEVELS SIMILAR TO THOSE IN NORMAL CELLS. THESE DATA SUGGEST THAT DUPLEX RNAS CAN BE USED TO UP-REGULATE FXN EXPRESSION AND MAY PROVIDE A NEW STRATEGY FOR THERAPY. TITLE: EARLY AND LONGITUDINAL ASSESSMENT OF NEURODEGENERATION IN THE BRAIN AND SPINAL CORD IN FRIEDREICH'S ATAXIA CO-PRINCIPAL INVESTIGATORS: PIERRE-GILLES HENRY AND CHRISTOPHE LENGLET (UNIVERSITY OF MINNESOTA) THE OVERALL GOAL OF THIS PROJECT IS TO DEMONSTRATE THE FEASIBILITY OF IDENTIFYING AND TRACKING STRUCTURAL AND NEUROCHEMICAL CHANGES IN THE SPINAL CORD AND BRAIN OF PATIENTS WITH FRDA, ESPECIALLY AT AN EARLY STAGE OF THE DISEASE. DRS. HENRY AND LENGLET WILL USE BOTH MAGNETIC RESONANCE SPECTROSCOPY AND DIFFUSION MAGNETIC RESONANCE IMAGING, WHICH PROVIDE COMPLEMENTARY INFORMATION ON NEUROCHEMICAL AND MICROSTRUCTURAL CHANGES. THESE STUDIES MAY RESULT IN NOVEL AND UNIQUE TOOLS FOR THE QUANTITATIVE ASSESSMENT OF DISEASE PROGRESSION AND TREATMENT EFFICACY IN PROSPECTIVE THERAPEUTIC TRIALS OF FRDA.ADDITIONALLY, FARA CONTINUES TO SUPPORT OF THE DEVELOPMENT OF NEW MOUSE MODELS OF FA WITH RESEARCH FUNDING THE JACKSON LABORATORIES, BAR HARBOR, MAINE AND DR. VIJAY CHANDRAN AT THE UNIVERISTY OF CALIFORNIA LOS ANGELES.RESULTS REPORTED FROM FARA AWARDED GRANTS - IN 2014, THERE WERE >20 MEDICAL AND SCIENTIFIC PUBLICATIONS THAT WERE DETAILED REPORTS OF FARA FUNDED RESEARCH. HERE ARE TWO HIGHLIGHTED PUBLICATIONS:DR. HELENE PUCCIO A RESEARCH DIRECTOR AT THE FRENCH INSTITUTE OF HEALTH AND MEDICAL RESEARCH (INSERM) AND FARA FUNDED SCIENTIST, HAS BEEN TESTING A GENE-THERAPY APPROACH IN THE CARDIAC FA MOUSE MODEL THAT SHE DEVELOPED IN HER LAB AT THE INSTITUTE DE GENETIQUE MOLECULAIRE ET CELLULAIRE. THE RESULTS SHOW THAT A SINGLE INTRAVENOUS INJECTION OF AAVRH10 EXPRESSING FRATAXIN IS NOT ONLY CAPABLE OF PREVENTING THE DEVELOPMENT OF HEART DISEASE IN THE MOUSE, BUT ALSO, FULLY AND RAPIDLY TREATS THE MICE WITH ADVANCED STAGES OF HEART DISEASE, RETURNING THE HEART TO NORMAL FUNCTION. THE RESULTS OF THIS RESEARCH WERE FULLY REPORTED IN NATURE MEDICINE, APRIL 2014. FARA HAS CONTINUED TO FUND BOTH CARDIAC AND NEURONAL GENE THERAPY RESEARCH IN DR. PUCCIO'S LABORATORY. DR. DAVID LYNCH, AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA, COMPLETED IN 2103 AND 2014 A SMALL PILOT PHASE 2A OF STUDY INTERFERON GAMMA IN CHILDREN WITH FA, WITH FUNDING FROM FARA AND SUPPORT FROM VIDARA (NOW HORIZON PHARMA) WHICH DONATED THE DRUG FOR THE INITIAL STUDY. THE PRIMARY PURPOSE WAS TO EVALUATE SAFETY AND TOLERABILITY OF INTERFERON GAMMA AND TO SEE IF THERE WAS AN INCREASE IN FRATAXIN LEVELS. THE FULL RESULTS WERE PRESENTED AT THE CHOP FA SYMPOSIUM AND PUBLISHED IN ACTA NEUROLOGICA SCANDIVANICA IN OCTOBER 2014. IN SUMMARY, WHILE THERE WAS NO SIGNIFICANT CHANGE IN FRATAXIN LEVELS ACROSS THE GROUP, INDIVIDUAL DATA IN CERTAIN TISSUES (BUCCAL CELLS) DISPLAYS A LOT OF "NOISE" - LEVELS SPIKING UP AND DOWN, WHICH IS SOMETHING THAT DOES NOT NORMALLY OCCUR. MORE INTRIGUING, THE CLINICAL DATA OBTAINED FROM THE STUDY SHOWED A SIGNIFICANT IMPROVEMENT IN NEUROLOGICAL FUNCTION MEASURED BY THE FRIEDREICH ATAXIA RATING SCALE (FARS). IT IS IMPORTANT TO NOTE THAT THIS STUDY DID NOT HAVE A CONTROL OR PLACEBO GROUP.. THESE RESULTS ARE SUPPORTIVE OF THE NEED FOR FURTHER INVESTIGATION. HORIZON PHARMA, THE COMPANY THAT SELLS ACTIMMUNE (INTERFERON GAMMA) IN THE UNITED STATES, IS COMMITTED TO MOVING FORWARD. THEY ARE PRESENTLY IN PLANNING STAGES OF WHAT WE HOPE WILL BE A DEFINITIVE PHASE 3 STUDY (PLACEBO CONTROLLED IN A MUCH LARGER GROUP OF INDIVIDUALS WITH FA). | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $109,639 | ExpenseAmt |
| Grant | $10,000 | GrantAmt |
| Desc | RESEARCH CONFERENCES: FARA ORGANIZES AND SUPPORTS A NUMBER OF SCIENTIFIC CONFERENCES TO IMPROVE SHARING OF KNOWLEDGE, INSIGHTS AND ADVANCES AND BUILD COLLABORATIONS AND SYNERGISTIC CONNECTIONS BETWEEN FA RESEARCHERS. MAY 2014 - FARA AND GOFAR (ITALIAN FA ADVOCACY ORGANIZATION) CO-HOSTED A MEETING ON FRIEDREICH'S ATAXIA MOUSE MODELS IN PHILADELPHIA. ACADEMIC AND BIOPHARMACEUTICAL SCIENTISTS MADE UP THE 50 PARTICIPANTS IN THE MEETING. NEW MOUSE MODELS IN DEVELOPMENT WERE PRESENTED BY M.POOK AND V.CHANDRAN (FARA GRANTEES). FURTHER CHARACTERIZATION OF MITOCHONDRIAL DYSFUNCTION AND NEURODEGENERATION EXISTING MODELS WAS HIGHLIGHTED BY RESEARCH FROM J. MAGRENE AND C. LUTZ (FARA GRANTEES). C. LUTZ FROM THE JACKSON LABORATORIES ALSO LED A DISCUSSION ON FURTHER MOUSE MODEL DEVELOPMENT WORK NEEDED TO FULL GAPS SO THAT MODELS WITH MORE ROBUST AND DISEASE RELEVANT PHENOTYPE WOULD BE AVAILABLE FOR DRUG DEVELOPMENT. AFTER THE MEETING FARA AND GOFAR AWARDED FUNDS TO JACKSON LABORATORIES TO BEGIN NEW MODEL DEVELOPMENT.OCTOBER 2014 - FARA ORGANIZED A MEETING HOSTED AT THE NATIONAL INSTITUTES OF HEALTH ON ALL ASPECTS OF BIOMARKER EXPLORATION IN FA AND THEIR IMPORTANCE TO ADVANCING TREATMENTS. SCIENTISTS, GOVERNMENT OFFICIALS AND PHARMACEUTICAL REPRESENTATIVES MADE UP THE 60 PARTICIPANTS IN THE MEETING. A BIOMARKER CONSORTIUM WAS CREATED OUT OF THE MEETING TO HELP TAKE IDENTIFIED PROJECTS/ NEEDS FORWARD.IN 2014, FARA BEGAN PLANNING THE NEXT FA INTERNATIONAL SCIENTIFIC CONFERENCE. FARA DECIDED TO PARTNER WITH OTHER INTERNATIONAL ATAXIA RESEARCH ORGANIZATIONS TO COMBINE EFFORTS AND CONFERENCE NEEDS. THE 2015 INTERNATIONAL ATAXIA RESEARCH CONFERENCE WILL BE IN WINDSOR, ENGLAND, MARCH 25-28, 2015. FARA IS CO-ORGANIZING AND HOSTING THE MEETING WITH ATAXIA UK, ATAXIA IRELAND AND GOFAR. CONFERENCE STEERING COMMITTEE WAS ESTABLISHED IN EARLY 2014, PRELIMINARY PROGRAM AND INVITED SPEAKERS WERE CONFIRMED AND REGISTRATION AND SCIENTIFIC ABSTRACTS OPENED IN JULY 2014. AT THE END OF 2014 THERE WERE >150 ABSTRACTS SUBMITTED AND >250 CONFIRMED DELEGATES INCLUDING REPRESENTATIVES FROM THE EUROPEAN MEDICAL ASSOCIATION. THE CONFERENCE PROGRAM CAN BE FOUND AT HTTP://WWW.CUREFA.ORG/CONFERENCE.HTML | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $181,540 | ExpenseAmt |
| Desc | EDUCATION, AWARENESS & OUTREACH PROGRAMS: FRIEDREICH'S ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO 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 ALSO HOSTED WEBINARS TO INFORM THE COMMUNITY ABOUT THE LATEST DEVELOPMENTS IN FA RESEARCH AND SOME OF THE RESULTS OF FUNDED GRANTS.FARA CO-ORGANIZED TWO PATIENT SYMPOSIUMS WITH CLINICAL RESEARCH NETWORK SITES, CHILDREN'S HOSPITAL OF PHILADELPHIA (CHOP) AND UNIVERSITY OF SOUTH FLORIDA (USF). THE CHOP AND FARA TEAM LED AN ALL-DAY SYMPOSIUM AT IN KING OF PRUSSIA, PA ON OCTOBER 13TH, 2014. THERE WERE MORE THAN 175 PATIENT FAMILIES WHO PARTICIPATED. THE SYMPOSIUM PROVIDED:" CLINICAL UPDATES, INCLUDING CARDIOLOGY AND NEUROLOGY, IN PATIENTS WITH FA;" UPDATES ON CURRENT RESEARCH AND CLINICAL TRIALS, INCLUDING GENE THERAPY, INTERFERON GAMMA, RNA BASED APPROACHES TO UNSILENCING THE GENEAND" PANEL DISCUSSION ON HOME MODIFICATIONS TO IMPROVE ACCESSIBILITY.THE SYMPOSIUM AT USF WAS HELD ON SEPT 4, 2014 HAD ABOUT 200 ATTEND AND WAS STREAMED LIVE ON FACEBOOK AND THERE WERE SEVERAL HUNDRED MORE VIEWS. THE USF SYMPOSIUM FEATURED A DISTINGUISHED RESEARCH PANEL PROVIDING UPDATES ON UNDERSTANDING HOW AND WHY THE GENE MUTATIONS LEADS TO DECREASED FRATAXIN AND SPECIFIC THERAPEUTIC APPROACHES INCLUDING, HDAC INHIBITORS, ADVANCES IN GENE THERAPY. THE PATIENT PANEL DISCUSSION SHARED EXPERIENCES RELATED TO PARTICIPATION IN CLINICAL TRIALS AND RESEARCH. THE FARA AMBASSADOR PROGRAM WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF GROWTH AND TRANSFORMATION IN 2014. THE MISSION OF THE FARA AMBASSADORS IS TO BE POSITIVE, SUPPORTIVE, PEER REPRESENTATIVES FOR THE FA COMMUNITY; ACTIVELY RAISING AWARENESS AND FUNDS FOR FARA.IN 2014, FARA FACILITATED FORMAL TRAINING FOR THE AMBASSADOR LEADERSHIP TEAM AND AMBASSADORS. THE AMBASSADOR BLOG PROJECT TEAM CONSISTS OF THREE ADMINS AND 6 MORE TEAM MEMBERS. IN 2014, THEY ACHIEVED >100 POSTS WITH ~40,000 VIEWS. THE AMBASSADORS ALSO STARTED A CARD PROGRAM IN WHICH THEY DESIGNED CARDS TO SEND TO THE VARIOUS STAKEHOLDERS AND COMMUNITY MEMBERS THROUGHOUT THE YEAR TO SAY THANK YOU OR TO OFFER ENCOURAGEMENT. THEY ARE AVERAGING ABOUT 20 CARDS PER MONTH. FINALLY, THE AMBASSADORS HAVE DONE IMPORTANT OUTREACH IN VISITING >8 ACADEMIC LABORATORIES AND BIOPHARMACEUTICAL COMPANIES TO PROVIDE THE PATIENT PERSPECTIVE OF FA, AND SHARING THEIR PERSONAL EXPERIENCES AT FA SYMPOSIA. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $4,629,014 | 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 |
| Temp Or Permanent Endowments | 0 | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | Yes (1) | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | 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 | 0 | 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 With Officer Ent | 0 | BusinessRlnWithOfficerEntInd |
| 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 | 6 | 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 |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 16 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 15 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | Yes (1) | 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 |
| Other Website | Yes (X) | OtherWebsiteInd |
| 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 (17 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt |
|---|---|---|---|---|---|---|---|
| RONALD BARTEK | |||||||
| PRESIDENT/DIRECTOR | 40.00 | Yes (X) | Yes (X) | Yes (X) | $160,000 | $0 | $10,492 |
| EDWARD RAMSEY | |||||||
| CHAIRMAN | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| MARILYN E DOWNING | |||||||
| SECRETARY | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| RUTH DEWITT | |||||||
| TREASURER | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | |
| JENNIFER GOOD | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| PAUL AVERY | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| PETER CRISP | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| DR EARL GILLER | |||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| DR HOLLY HEDRICK | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| NICHOLAS A JOHNSON | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| GEOFFREY LEVITT | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| STEVE KLASKO | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| BILL ALEFANTIS | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| THOMAS HAMILTON | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| BERNARD RAVINA | |||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| DR SANJAY BIDICHANDANI | |||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| JENNIFER FARMER | |||||||
| EXECUTIVE DIRECTOR | 40.00 | Yes (X) | $89,494 | $0 | $7,765 | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $249,494 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $18,257 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 1 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $2,953,189 | FundraisingAmt |
| All Other Contributions | $2,005,642 | AllOtherContributionsAmt |
| Total Contributions | $4,958,831 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $14,051 | TotalRevenueColumnAmt |
| Exclusion | $14,051 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $410,253 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $136,651 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $273,602 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $273,602 | TotalRevenueColumnAmt |
| Exclusion | $273,602 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $613,242 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $2,953,189 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $616,979 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$3,737 | TotalRevenueColumnAmt |
| Exclusion | -$3,737 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,242,747 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $283,916 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,258,047 | TotalAmt |
| Program Services | $3,258,047 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $855,855 | TotalAmt |
| Program Services | $855,855 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $272,613 | TotalAmt |
| Program Services | $205,676 | ProgramServicesAmt |
| Management And General | $18,250 | ManagementAndGeneralAmt |
| Fundraising | $48,687 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $190,023 | TotalAmt |
| Program Services | $150,410 | ProgramServicesAmt |
| Management And General | $11,468 | ManagementAndGeneralAmt |
| Fundraising | $28,145 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,250 | TotalAmt |
| Management And General | $11,250 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,250 | TotalAmt |
| Program Services | $9,282 | ProgramServicesAmt |
| Management And General | $749 | ManagementAndGeneralAmt |
| Fundraising | $6,219 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $34,331 | TotalAmt |
| Program Services | $34,331 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,990 | TotalAmt |
| Program Services | $12,989 | ProgramServicesAmt |
| Management And General | $8,609 | ManagementAndGeneralAmt |
| Fundraising | $392 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $18,292 | TotalAmt |
| Program Services | $10,453 | ProgramServicesAmt |
| Management And General | $2,613 | ManagementAndGeneralAmt |
| Fundraising | $5,226 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $99,979 | TotalAmt |
| Program Services | $80,981 | ProgramServicesAmt |
| Management And General | $18,953 | ManagementAndGeneralAmt |
| Fundraising | $45 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,511 | TotalAmt |
| Program Services | $4,611 | ProgramServicesAmt |
| Management And General | $1,900 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $754 | TotalAmt |
| Management And General | $754 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,906 | TotalAmt |
| Management And General | $4,223 | ManagementAndGeneralAmt |
| Fundraising | $1,683 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| CREDIT CARD & BANK FEES | $5,519 | $404 | $2,120 | $2,995 |
| BOOKS, SUBSCRIPTIONS & | $4,969 | $3,975 | $994 | |
| BUSINESS REGISTRATION F | $3,825 | $570 | $3,255 | |
| MISCELLANEOUS | $2,587 | $2,000 | $587 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,293 | TotalAmt |
| Management And General | $1,232 | ManagementAndGeneralAmt |
| Fundraising | $61 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,809,994 | TotalAmt |
| Program Services | $4,629,014 | ProgramServicesAmt |
| Management And General | $84,272 | ManagementAndGeneralAmt |
| Fundraising | $96,708 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,357,092 | BOYAmt |
| EOY | $961,837 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $277,365 | BOYAmt |
| EOY | $973,135 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $109,720 | BOYAmt |
| EOY | $111,200 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,719 | BOYAmt |
| EOY | $3,260 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $5,833 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $3,510 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $949 | BOYAmt |
| EOY | $2,323 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $836,233 | BOYAmt |
| EOY | $868,679 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,100,000 | BOYAmt |
| EOY | $1,091,500 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,688,078 | BOYAmt |
| EOY | $4,011,934 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $381,693 | BOYAmt |
| EOY | $290,640 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $381,693 | BOYAmt |
| EOY | $290,640 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,972,678 | BOYAmt |
| EOY | $3,393,277 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $333,707 | BOYAmt |
| EOY | $328,017 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,306,385 | BOYAmt |
| EOY | $3,721,294 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,688,078 | BOYAmt |
| EOY | $4,011,934 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $432,753 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$17,844 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | 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 | $2,980,429 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,831,171 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,174,652 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $4,460,547 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,572,073 | CurrentTaxYearAmt |
| Total | $19,018,872 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,980,429 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,831,171 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $3,174,652 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $4,460,547 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,572,073 | CurrentTaxYearAmt |
| Total | $19,018,872 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $1,040,178 | SubstantialContributorsTotAmt |
| Public Support Total170 | $17,978,694 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $57,570 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $12,704 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $21,555 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $9,955 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $14,051 | CurrentTaxYearAmt |
| Total | $115,835 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $19,134,707 | TotalSupportAmt |
| Public Support CY170 | 0.93960 | PublicSupportCY170Pct |
| Public Support PY170 | 0.93510 | 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Section4955 Organization Tax | $0 | Section4955OrganizationTaxAmt |
| Section4955 Managers Tax | $0 | Section4955ManagersTaxAmt |
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,100 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,000 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $9,100 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,457,873 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,466,973 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $423,349 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $105,837 | 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 Minus2 | $302,630 | CurrentYearMinus2Amt |
| Current Year Minus1 | $350,101 | CurrentYearMinus1Amt |
| Current Year | $423,349 | CurrentYearAmt |
| Total | $1,076,080 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $1,614,120 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus2 | $9,100 | CurrentYearMinus2Amt |
| Current Year Minus1 | $9,100 | CurrentYearMinus1Amt |
| Current Year | $9,100 | CurrentYearAmt |
| Total | $27,300 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus2 | $75,658 | CurrentYearMinus2Amt |
| Current Year Minus1 | $87,525 | CurrentYearMinus1Amt |
| Current Year | $105,837 | CurrentYearAmt |
| Total | $269,020 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $403,530 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $3,564 | CurrentYearMinus3Amt |
| Current Year Minus2 | $5,100 | CurrentYearMinus2Amt |
| Current Year Minus1 | $5,100 | CurrentYearMinus1Amt |
| Current Year | $5,100 | CurrentYearAmt |
| Total | $18,864 | TotalAmt |
Schedule D IRS990ScheduleD
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $5,833 | OtherCostOrOtherBasisAmt |
| Depreciation | $3,510 | DepreciationAmt |
| Book Value | $2,323 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $2,323 | TotalBookValueLandBuildingsAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | INVESTMENT IN EDISON PHARMACEUTICALS, INC. | Desc |
| Book Value | $1,091,500 | BookValueAmt |
| Method Valuation | C | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $1,091,500 | TotalBookValueProgramRltdAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $5,841,882 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$17,844 | NetUnrealizedGainsInvstAmt |
| Other Revenue | $616,979 | OtherRevenueAmt |
| Revenue Not Reported | $599,135 | RevenueNotReportedAmt |
| Revenue Subtotal | $5,242,747 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $5,242,747 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,426,973 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $616,979 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $616,979 | ExpensesNotReportedAmt |
| Expenses Subtotal | $4,809,994 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $4,809,994 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART X, LINE 2: | FARA BELIEVES IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. FARA'S FEDERAL RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX (FORM 990) FOR TAX YEARS 2011, 2012 AND 2013 IS SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THE TAX RETURNS WERE FILED. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|
| EUROPE | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $666,338 |
| EAST ASIA AND THE PACIFIC | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $189,517 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continutation Total Office | 0 | ContinutationTotalOfficeCnt |
| Continutation Total Employee | 0 | ContinutationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $855,855 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $855,855 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (8 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| EUROPE | MEDICAL RESEARCH | $101,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $100,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $75,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $295,299 | WIRE |
| EUROPE | MEDICAL RESEARCH | $21,195 | WIRE |
| EUROPE | MEDICAL RESEARCH | $23,844 | WIRE |
| EUROPE | MEDICAL RESEARCH | $125,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $114,517 | WIRE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 8 | Total501c3OrgCnt |
| 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 |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | FARA ENERGY BALL | Event1Nm |
| Gross Receipts Event1 | $1,674,795 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,182,594 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $492,201 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $236,892 | OtherDirectExpensesEvent1Amt |
| Event2 | RIDE ATAXIA PHILADELPHIA | Event2Nm |
| Gross Receipts Event2 | $264,673 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $252,798 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $11,875 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $47,561 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 65 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,626,963 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,517,797 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $109,166 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $332,526 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $3,566,431 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $2,953,189 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $613,242 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $616,979 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $616,979 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$3,737 | 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 (23 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|
| UNIVERSITY OF ROCHESTER | ||||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $121,783 | MEDICAL RESEARCH | |
| UNIVERSITY OF SOUTH FLORIDA FOUNDATION | ||||||||
| 4202 EAST FOWLER AVENUE | TAMPA | FL | 33620 | 590879015 | 501(C)(3) | $150,000 | MEDICAL RESEARCH | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | ||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $138,621 | MEDICAL RESEARCH | |
| OHIO STATE UNIVERSITY | ||||||||
| 333 W 10TH AVE | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | $5,307 | MEDICAL RESEARCH | |
| SCRIPPS RESEARCH INSTITUTE | ||||||||
| 10550 NORTH TORREY PINES ROAD | LA JOLLA | CA | 92037 | 330435954 | 501(C)(3) | $205,510 | MEDICAL RESEARCH | OSP-TPC7 |
| THE JACKSON LABORATORY | ||||||||
| 600 MAIN STREET | BAR HARBOR | ME | 04609 | 010211513 | 501(C)(3) | $21,360 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES | ||||||||
| 10920 WILSHIRE BLVD 5TH FLOOR | LOS ANGELES | CA | 90024 | 956006143 | 501(C)(3) | $245,500 | MEDICAL RESEARCH | |
| UNIVERSITY OF IOWA DEPT OF PEDIATRICS | ||||||||
| 200 HAWKINS DRIVE | IOWA CITY | IA | 52242 | 426004813 | 501(C)(3) | $7,700 | MEDICAL RESEARCH | |
| THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | ||||||||
| 3451 WALNUT STREET RM P 221 | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | $1,264,178 | MEDICAL RESEARCH | FRANKLIN BLDG |
| INDIANA UNIVERSITY | ||||||||
| 1044 WEST WALNUT | INDIANAPOLIS | IN | 46202 | 356001673 | 501(C)(3) | $100,000 | MEDICAL RESEARCH | |
| UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER | ||||||||
| 5323 HARRY HINES BLVD BL 2100 | DALLAS | TX | 753909020 | 756002868 | 501(C)(3) | $78,071 | MEDICAL RESEARCH | |
| UNIVERSITY OF FLORIDA - DEPT OF NEUROLOGY | ||||||||
| L3-100 MCKNIGHT BRAIN INSTITUTE | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $15,800 | MEDICAL RESEARCH | NEWELL DRIVE |
| ALBANY RESEARCH INSTITUTE INC | ||||||||
| 113 HOLLAND AVE | ALBANY | NY | 12208 | 141716021 | 501(C)(3) | $73,492 | MEDICAL RESEARCH | |
| DUKE UNIVERSITY | ||||||||
| 134 CHAPEL DRIVE | DURHAM | NC | 27708 | 560532129 | 501(C)(3) | $100,000 | MEDICAL RESEARCH | |
| FEDERATION OF AMERICAN SOCIETIES FOR EXPERIMENTAL BIOLOGY | ||||||||
| 9650 ROCKVILLE PIKE | BETHESDA | MD | 20814 | 520700497 | 501(C)(3) | $5,000 | MEDICAL RESEARCH | |
| LSU HEALTH SCIENCE CENTER | ||||||||
| 433 BOLIVAR ST | NEW ORLEANS | LA | 70112 | 726087770 | 501(C)(3) | $147,049 | MEDICAL RESEARCH | |
| REGENTS OF THE UNIVERSITY OF MINNESOTA | ||||||||
| 200 SE OAK ST 600 | MINNEAPOLIS | MN | 55455 | 416007513 | 501(C)(3) | $150,000 | MEDICAL RESEARCH | |
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | ||||||||
| 445 E 69TH ST | NEW YORK | NY | 10021 | 131623978 | 501(C)(3) | $99,276 | MEDICAL RESEARCH | |
| AMERICAN HEART ASSOCIATION | ||||||||
| 1617 JOHN F KENNEDY BLVD 700 | PHILADELPHIA | PA | 19103 | 135613797 | 501(C)(3) | $13,000 | MEDICAL RESEARCH | |
| BAYLOR COLLEGE OF MEDICINE | ||||||||
| 1 BAYLOR PLAZA | HOUSTON | TX | 77030 | 741613878 | 501(C)(3) | $125,000 | MEDICAL RESEARCH | |
| NATIONAL ATAXIA FOUNDATION | ||||||||
| 2600 FERNBROOK LANE NORTH | PLYMOUTH | MN | 55447 | 410832903 | 501(C)(3) | $5,000 | MEDICAL RESEARCH | |
| UNIVERSITY OF VIRGINIA | ||||||||
| UVA HEALTH SYSTEM | CHARLOTTESVILLE | VA | 22908 | 540485595 | 501(C)(3) | $125,000 | MEDICAL RESEARCH | |
| THE REGENTS OF UNIVERSITY OF CA DAVIS | ||||||||
| PO BOX 989062 | WEST SACRAMENTO | CA | 95798 | 946036494 | 501(C)(3) | $37,500 | MEDICAL RESEARCH | |
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. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| 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
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | RONALD BARTEK | PersonNm |
| Title | PRESIDENT/DIRECTOR | TitleTxt |
| Base Compensation Filing Org | $160,000 | BaseCompensationFilingOrgAmt |
| Compensation Based On Rltd Orgs | $0 | CompensationBasedOnRltdOrgsAmt |
| Bonus Filing Organization | $0 | BonusFilingOrganizationAmount |
| Bonus Related Organizations | $0 | BonusRelatedOrganizationsAmt |
| Other Compensation Filing Org | $0 | OtherCompensationFilingOrgAmt |
| Other Compensation Rltd Orgs | $0 | OtherCompensationRltdOrgsAmt |
| Deferred Compensation Flng Org | $0 | DeferredCompensationFlngOrgAmt |
| Deferred Comp Rltd Orgs | $0 | DeferredCompRltdOrgsAmt |
| Nontaxable Benefits Filing Org | $10,492 | NontaxableBenefitsFilingOrgAmt |
| Nontaxable Benefits Rltd Orgs | $0 | NontaxableBenefitsRltdOrgsAmt |
| Total Compensation Filing Org | $170,492 | TotalCompensationFilingOrgAmt |
| Total Compensation Rltd Orgs | $0 | TotalCompensationRltdOrgsAmt |
| Comp Report Prior990 Filing Org | $0 | CompReportPrior990FilingOrgAmt |
| Comp Report Prior990 Rltd Orgs | $0 | CompReportPrior990RltdOrgsAmt |
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 | $164,419 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | MARKET PRICE | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (9 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 4A CONTINUED | FIRST EVER, CONCENSUS CLINICAL MANAGEMENT GUIDELINES FOR FRIEDREICH ATAXIA PUBLISHED. FARA'S GOAL IS TO IMPROVE TREATMENT AND MEDICAL OUTCOMES FOR INDIVIDUALS LIVING WITH FA. ONE WAY TO DO THIS IS BY HAVING EDUCATIONAL MATERIALS AVAILABLE TO PHYSICIANS AND PEOPLE LIVING WITH FA. DRS. LOUISE CORBEN AND MARTIN DELATYCKI LED A COMMITTED TEAM OF INTERNATIONAL PHYSICIANS AND RESEARCHERS, MOST FROM FARA'S COLLABORATIVE CLINICAL RESEARCH NETWORK, WHO HAVE CRITICALLY EVALUATED MEDICAL LITERATURE, OUTCOMES RESEARCH AND CLINICAL PRACTICE FOR TREATING SYMPTOMS OF FA, AND HAVE COME TOGETHER TO PREPARE THE FIRST COMPREHENSIVE CONSENSUS CLINICAL MANAGEMENT GUIDELINES. THESE GUIDELINES WERE PUBLISHED IN ORPHANET JOURNAL OF RARE DISEASES, NOV 2014, AND A FULL VERSION FOR PHYSICIANS AND INDIVIDUALS WITH FA IS AVAILABLE ON THE FARA WEBSITE, HTTP://WWW.CUREFA.ORG/_PDF/CLINICALMANAGEMENTGUIDELINESFORFA.PDF THESE GUIDELINES ARE A GIANT STEP FORWARD IN DOCUMENTING DIAGNOSIS, TREATMENT AND MANAGEMENT OF FA. IN ADDITION TO RESEARCH GRANTS FARA FUNDS THE ONGOING DEVELOPMENT 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: PATIENT REGISTRY : THE ONLY INTERNATIONAL FRIEDREICH ATAXIA PATIENT REGISTRY WITH MORE THAN 2200 INDIVIDUALS ENROLLED. THIS REGISTRY CAPTURES DEMOGRAPHIC AND CLINICAL INFORMATION ON INDIVIDUALS WITH FA AND IS USED TO RECRUIT INDIVIDUALS FOR CLINICAL TRIALS WORLD WIDE. FARA PATIENT REGISTRY : WWW.CUREFA.ORG/REGISTRY COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): AN INTERNATIONAL NETWORK OF 10 CLINICAL RESEARCH CENTERS 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, VISIT WWW.CUREFA.ORG/NETWORK.HTML NATURAL HISTORY STUDY: 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 : FUNCTIONAL PERFORMANCE TESTS (E.G., TIMED PEGBOARD OR WALK TESTS, VISION, HEARING OR SPEECH TESTS) THAT 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). BIOMARKERS CAN BE USED TO ASSESS RISK OF DISEASE, DIAGNOSIS, OR OUTCOMES. USE OF BIOMARKERS IN DRUG DEVELOPMENT IS OF GREAT INTEREST BECAUSE BIOMARKERS CAN PROVIDE EVIDENCE OF BIOLOGICAL ACTIVITY, POTENTIALLY DEMONSTRATING THERAPEUTIC BENEFIT MORE QUICKLY THAN TRADITIONAL OUTCOME MEASURES. BIOREPOSITORY: A REPOSITORY OR BANK 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 TEN YEARS OF NATURAL HISTORY DATA (ONGOING) IN MORE THAN 800 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. FARA CONTRIBUTED MORE THAN $550,000 IN 2014 TO CLINICAL RESEARCH INFRASTRUCTURE IN DIRECT FUNDING TO THE CCRN IN FA CENTERS AND RELATED CLINICAL RESEARCH ACTIVITIES. TITLES AND SUMMARIES OF MOST OF THE PROJECTS PRESENTLY FUNDED BY FARA ARE AVAILABLE AT: WWW.CUREFA.ORG/RPMP/PUBLIC/PGGRANTLIST.ASPX AND COMPLETE LISTINGS OF GRANTS AWARDED BY YEAR CAN BE ACCESSED AT: WWW.CUREFA.ORG/GRANTS-AWARDED.HTML |
| FORM 990, PART VI, SECTION A, LINE 4 | THE BYLAWS WERE AMENDED AT THE END OF 2014 TO MODIFY THE NUMBER OF DIRECTORS FROM 18 TO 20. A VICE-CHAIR WAS ADDED AND INCLUDED AS AN EX OFFICIO MEMBER OF THE EXECUTIVE COMMITTEE. |
| FORM 990, PART VI, SECTION B, LINE 11 | 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 REQUIRED TO ANNUALLY COMPLETE A CONFLICT OF INTEREST STATEMENT |
| 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 AND EXECUTIVE DIRECTOR. |
| FORM 990, PART VI, SECTION C, LINE 18 | FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG |
| FORM 990, PART VI, SECTION C, LINE 19 | 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 VI LINE 17 | THE ORGANIZATION IS ALSO REGISTERED TO SOLICIT CONTRIBUTIONS IN THE STATES LISTED. |
| FORM 990, PART XII, LINE 2C | FARA'S AUDIT COMMITTEE CONSISTS OF THE EXECUTIVE COMMITTEE, EXECUTIVE DIRECTOR 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. FARA'S BOARD OF DIRECTORS RECEIVES THE FINANCIAL STATEMENTS AND 990 FOR REVIEW AND VOTES TO APPROVE PRIOR TO PUBLIC FILING. |