FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2013
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2013-01-01 to 2013-12-31
- Filed
- 2014-05-27
- IRS object ID
- 201401479349300720
- Schema version
- 2013v3.0
- 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 | 2014-05-27T10:15:56-05:00 | ReturnTs |
| Tax Period End | 2013-12-31 | 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 | BusinessNameLine1 |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 3068 | AddressLine1 |
| City | WEST CHESTER | City |
| State | PA | State |
| ZIP Code | 193813068 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2013-01-01 | 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 | BusinessNameLine1 |
| 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 | AddressLine1 |
| City | SPRINGFIELD | City |
| State | VA | State |
| ZIP Code | 22151 | ZIPCode |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JENNIFER FARMER | PersonNm |
| Person Title | EXECUTIVE DIRECTOR | PersonTitleTxt |
| Phone | 4848796160 | PhoneNum |
| Signature | 2014-05-14 | 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 | 2013 | TaxYr |
| Build TS | 2015-11-30 17:44:51Z | 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 | AddressLine1 |
| City | DOWNINGTOWN | City |
| State | PA | State |
| ZIP Code | 19335 | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $5,226,124 | 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 | $3,174,652 | PYContributionsGrantsAmt |
| CY Contributions Grants | $3,852,500 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $21,555 | PYInvestmentIncomeAmt |
| CY Investment Income | $59,864 | CYInvestmentIncomeAmt |
| PY Other Revenue | $127,578 | PYOtherRevenueAmt |
| CY Other Revenue | $75,480 | CYOtherRevenueAmt |
| PY Total Revenue | $3,323,785 | PYTotalRevenueAmt |
| CY Total Revenue | $3,987,844 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $2,673,157 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $2,806,246 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $420,293 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $451,977 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $158,339 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $167,762 | PYOtherExpensesAmt |
| CY Other Expenses | $211,229 | CYOtherExpensesAmt |
| PY Total Expenses | $3,261,212 | PYTotalExpensesAmt |
| CY Total Expenses | $3,469,452 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $62,573 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $518,392 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $3,032,470 | TotalAssetsBOYAmt |
| Total Assets EOY | $3,688,078 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $264,360 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $381,693 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $2,768,110 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $3,306,385 | 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 | $2,992,504 | ExpenseAmt |
| Grant | $2,806,246 | 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 2013. IN TOTAL, FARA PROVIDED >$2.8M IN BASIC AND TRANSLATIONAL AND CLINICAL RESEARCH GRANTS, SCIENTIFIC CONFERENCE SUPPORT AND CLINICAL RESEARCH INFRASTRUCTURE FUNDING. OVER THE PAST YEAR, >26 NEW GRANT APPLICATIONS WERE SUBMITTED AND AFTER RIGOROUS PEER REVIEW, 13 WERE DETERMINED MERITORIOUS AND AWARDED FUNDING IN 2013 AND EARLY 2014. IN ADDITION, BASED ON EXCELLENT PROGRESS, CONTINUATION FUNDING WAS PROVIDED FOR 15 PROJECTS, FOR A TOTAL OF 28 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 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. A SAMPLE OF 2013 FARA FUNDED GRANTS FOLLOWS BELOW: - NEW INVESTIGATOR AWARD: DR. JONATHAN JONES, UNIVERSITY MIGUEL HERNANDEZDR. JONES WAS THE RECIPIENT OF FARA'S NEW INVESTIGATOR AWARD FOR HIS WORK EXAMINING THE NEUROPROTECTIVE EFFECT OF BONE MARROW-DERIVED STEM CELLS IN A FRIEDREICH'S ATAXIA MOUSE MODEL. THIS IS A NEW THERAPEUTIC APPROACH UTILIZING ADVANCES IN STEM CELLS. STEM CELLS ARE AN INCREASINGLY POPULAR SOURCE FOR CELL THERAPY IN A VARIETY OF DISEASES. DR. JONES' PREVIOUS WORKS HAS PROVEN THAT BONE MARROW STEM CELLS ARE CAPABLE OF SAFELY INTEGRATING INTO THE NERVOUS TISSUE AND INDUCE A TROPHIC EFFECT, PROTECTING THE NEURONS IN NEURODEGENERATIVE MODELS SUCH AS A CEREBELLAR ATAXIA MODEL (JONES J ET AL 2010) AND A MOTORNEURON DEGENERATIVE MODEL (PASTOR D ET AL 2011), AS WELL AS IN HUMAN ALS PATIENTS (BLANQUER ET AL 2012). HOWEVER, IN ORDER TO CONSIDER THE USE OF STEM CELLS FOR THE TREATMENT OF FRIEDREICH'S ATAXIA (FA), IT IS NECESSARY TO STUDY THE FEASIBILITY, SAFETY AND TROPHIC EFFICACY OF THIS APPROACH IN THE LAB. OVERALL, THE RESULTS WILL HELP HIM UNDERSTAND IF AND HOW STEM CELLS PROTECT NEURONS IN FA, AND POSSIBLY DRIVE US TO A POTENTIAL THERAPEUTIC APPROACH FOR THE DISEASE. - KEITH MICHAEL ANDRUS MEMORIAL AWARD (FOR CARDIAC RESEARCH)DR. MARK PAYNE, INDIANA UNIVERSITY & DR. MATTHEW HIRSHEY, DUKE UNIVERSITYTHIS PROJECT IS A COLLABORATIVE EFFORT BETWEEN DR. MARK PAYNE, MD, AT THE INDIANA UNIVERSITY SCHOOL OF MEDICINE, AND DR. MATT HIRSCHEY, PHD, AT DUKE UNIVERSITY SCHOOL OF MEDICINE, TO UNDERSTAND THE BIOCHEMICAL BASIS OF HEART FAILURE IN FA. BOTH HAVE INDEPENDENTLY MADE RECENT NOVEL FINDINGS THAT MAY REPRESENT CRITICAL EVENTS IN THE MITOCHONDRIAL DYSFUNCTION THAT UNDERLIES THE FATAL CARDIOMYOPATHY OF FA: THE HIRSCHEY LAB HAS MADE THE FUNDAMENTAL FINDING THAT MITOCHONDRIAL PROTEINS CAN BE MODIFIED ('ACETYLATED') AND BECOME LESS ACTIVE, AND THAT A SPECIFIC ENZYME ('SIRT3') IS RESPONSIBLE FOR RESTORING THEIR ACTIVITY TO NORMAL. THE PAYNE LAB HAS MADE THE DISEASE-RELATED FINDING THAT MITOCHONDRIAL PROTEINS FROM THE HEART IN FA ARE HEAVILY MODIFIED ('ACETYLATED'), AND THIS MAY REDUCE THEIR ABILITY TO USE NORMAL FUELS (FAT) FOR ENERGY, THUS CAUSING HEART FAILURE. THEY PROPOSE TO COMBINE THE STRENGTHS OF BOTH LABS TO EXPLORE AND DETERMINE THE MECHANISM OF MITOCHONDRIAL DYSFUNCTION UNDERLYING HEART FAILURE IN FA. IF CORRECT, THESE FINDINGS WOULD IDENTIFY AN IMPORTANT MECHANISM UNDERLYING MITOCHONDRIAL DYSFUNCTION IN FA, AND WOULD EXPLAIN WHY FA PATIENTS DEVELOP A FATAL HYPERTROPHIC CARDIOMYOPATHY. FURTHERMORE, THESE FINDINGS WOULD IDENTIFY A NEW TREATMENT STRATEGY FOR FA PATIENTS BY PHARMACOLOGICALLY TARGETING PROTEIN ACETYLATION, RESULTING IN NEW AND INNOVATIVE APPROACHES FOR FA TREATMENT.- KYLE BRYANT TRANSLATIONAL RESEARCH AWARD: DR. MIRIAM CNOP, BRUSSELS, BELGIUMTHE AIM OF THIS PRECLINICAL PROJECT, FROM DR. MIRIAM CNOP, IS TO EVALUATE THE POTENTIAL OF INCRETIN ANALOGS TO INDUCE FRATAXIN AND PREVENT OR IMPROVE NEURODEGENERATION AND DIABETES IN THE KIKO MOUSE MODEL. IF SUCCESSFUL, SHE FORESEES THAT THESE FINDINGS CAN BE RAPIDLY TRANSLATED INTO A CLINICAL TRIAL OF INCRETIN ANALOGS IN FA PATIENTS, BECAUSE THE DRUGS ARE COMMERCIALLY AVAILABLE FOR THE TREATMENT OF DIABETES.- BRONYA J. KEATS INTERNATIONAL RESEARCH AWARD: DRS.MARTIN DELATYCKI AND KIMBERLY LIN, MELBOURNE, AUSTRALIA AND PHILADELPHIA, PATHE LARGE GAPS IN OUR KNOWLEDGE REGARDING THE NATURE AND CAUSES OF THE HEART INVOLVEMENT IN FRIEDREICH ATAXIA (FRDA) LIMIT OUR ABILITY TO INVESTIGATE POTENTIAL TREATMENTS IN THIS CONDITION. INCREASED THICKNESS OF THE HEART WALLS, A COMMON FEATURE IN FRDA, IS A PREDICTOR OF SYMPTOMATIC HEART DISEASE AND PREMATURE MORTALITY. BASED ON THIS INFORMATION ALONE, A REDUCTION IN WALL THICKNESS HAS BEEN CONSIDERED TO BE A VALID CLINICAL ENDPOINT IN SOME CLINICAL TRIALS. IT IS SUSPECTED THAT THE INCREASE IN WALL THICKNESS INVOLVES BOTH LOSS OF HEART MUSCLE CELLS AND AN INCREASE IN SCAR TISSUE. IT IS CRITICAL WE FURTHER OUR UNDERSTANDING OF THE MECHANISMS THAT CONTRIBUTE TO INCREASED WALL THICKNESS IN FRDA, AS THIS WILL HELP DETERMINE IF REDUCTION IN WALL THICKNESS IS A VALID OUTCOME MEASURE. A NEW CMR TECHNIQUE HAS SHOWN PROMISE IN DETECTING EARLY SCARRING BUT HAS NOT YET BEEN STUDIED IN FRDA. IN THIS COLLABORATIVE STUDY BETWEEN THE MELBOURNE AND PHILADELPHIA CCRN SITES WE PROPOSE TO PERFORM CMR ON 105 INDIVIDUALS WITH FRDA TO DETERMINE THE FREQUENCY AND EXTENT OF SCARRING IN THE HEART MUSCLE WALL. AN IMPORTANT PART OF THIS STUDY IS THE INVESTIGATION OF THE RELATIONSHIP OF HEART CHANGES IN FRDA WITH ONE OF THE BODY'S NATURAL HORMONAL SYSTEMS, ALREADY TO KNOWN TO PLAY A ROLE IN OTHER TYPES OF HEART DISEASE. A SECOND IMPORTANT PART OF THE STUDY WILL BE MEASURING A NUMBER OF BLOOD MARKERS OF HEART FUNCTION IN INDIVIDUALS WITH AND WITHOUT FRDA, AS A MEANS OF TRYING TO UNDERSTAND THE MECHANISMS WHICH MAY CONTRIBUTE TO THE HEART MUSCLE CHANGES. - CLINICAL TRIAL AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA, PHILADELPHIA, PA(PRINCIPAL INEVSTIGATOR: DR. DAVID LYNCH)DR. LYNCH LED AN INVESTIGATOR INITIATED STUDY OPEN-LABEL, PILOT STUDY OF INTERFERON GAMMA (ACTIMMUNE) FOR THE TREATMENT OF FRIEDREICH'S ATAXIA IN 12 PATIENTS (CHILDREN) THAT WAS FUNDED BY FARA. THE STUDY IS NOW COMPLETE AND THE DATA IS BEING ANALYZED.ADDITIONALLY, FARA CONTINUES TO SUPPORT THE STANDARDIZED CHARACTERIZATION OF FRDA MOUSE MODELS AT THE JACKSON LABORATORY. 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 2000 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/REGISTRYCOLLABORATIVE 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. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $85,036 | ExpenseAmt |
| 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. IN JUNE 2013, FARA ORGANIZED A TWO-DAY FRIEDREICH'S ATAXIA CLINICAL RESEARCH CONFERENCE THAT HOSTED 65 PARTICIPANTS INCLUDING CLINICIANS, SCIENTISTS, FARA SCIENTIFIC ADVISORS AND REPRESENTATIVES FROM GOVERNMENT REGULATORY AGENCIES WHO PRESENTED AND DISCUSSED THE FOLLOWING TOPICS ON FRIEDREICH'S ATAXIA: OVERVIEW OF CLINICAL RESEARCH IN FRIEDREICH'S ATAXIA, NEUROLOGICAL, METABOLIC AND CARDIAC CLINICAL ENDPOINTS AND BIOMARKERS, COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA, CLINICAL MANAGEMENT GUIDELINES AND CLINICAL TRIAL DESIGN. IN OCTOBER 2013, FARA ORGANIZED A TWO-DAY FRIEDREICH'S ATAXIA GENE THERAPY MEETING TO HOST 17 PARTICIPANTS THAT INCLUDED CLINICIANS AND SCIENTISTS FOCUSING ON CREATING A CLINICAL DEVELOPMENT PLAN FOR GENE THERAPY IN FA DISCUSSING TRIAL DESIGN, PATIENT SELECTION CRITERIA, DELIVERY OF GENE THERAPY, OPTIMAL EFFICACY MEASURES AND WHAT IS NEEDED FOR APPROVAL FOR GOVERNMENT REGULATORY AGENCIES. THIS MEETING WAS CRITICAL TO SETTING THE FORWARD PATH OF THE GENE THERAPY PROGRAM IN FA. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $168,443 | 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 14TH, 2013. THERE WERE MORE THAN 150 PATIENT FAMILIES WHO PARTICIPATED. THE SYMPOSIUM PROVIDED:" CLINICAL UPDATES, INCLUDING CARDIOLOGY, NEUROLOGY, PHYSICAL THERAPY, AND PREGNANCY IN PATIENTS WITH FA;" UPDATES ON CURRENT RESEARCH AND CLINICAL TRIALS, INCLUDING GENE THERAPY, HDAC INHIBITORS AND" PANEL DISCUSSION ON ACCESSIBLE TRAVEL.THE SYMPOSIUM AT USF HAD ABOUT 200 ATTEND AND WAS STREAMED LIVE ON FACEBOOK AND THERE WERE SEVERAL HUNDRED MORE VIEWS. THE USF SYMPOSIUM FOCUSED ON CARDIAC ASPECTS OF FA, ADVANCES IN GENE THERAPY AND THE ANNOUNCEMENT OF A CLINICAL TRIAL OF DRUG TARGETING MITOCHONDRIAL DYSFUNCTION IN FA.ALSO, IN 2011 FARA LAUNCHED A NEW AMBASSADOR PROGRAM WHICH MENTORS AND ENCOURAGES INDIVIDUALS WITH FA TO DEVELOP AND SHARE THEIR PERSONAL STORY AND TO BEGIN GRASSROOTS OUTREACH TO RAISE AWARENESS. IN 2013, THE GROUP GREW TO 21 PARTICIPANTS. MANY OF THEM SHARED THEIR STORIES AND ON FARA'S NEWLY FORMED AMBASSADOR BLOG, HOSTED AND/ OR SPOKE AT FUNDRAISING EVENTS, AND RAISED AWARENESS AMONG COMMUNITY GROUPS AND/OR WITH THE MEDIA.ATAXIAN ATHLETE INITIATIVE (AAI)AAI IS A GRANT PROGRAM THAT PROVIDES, THROUGH A COMPETITIVE GRANT APPLICATION PROCESS, FUNDING FOR EQUIPMENT THAT ENABLES ELIGIBLE INDIVIDUALS WITH ATAXIA WHO HAVE DEMONSTRATED THE DESIRE TO STAY ACTIVE AND HEALTHY DESPITE THEIR DISABILITIES, TO START OR FURTHER DEVELOP THEIR ABILITIES IN ADAPTIVE CYCLING.TO QUALIFY, APPLICANTS MUST HAVE BEEN DIAGNOSED WITH SOME FORM OF ATAXIA. APPLICANTS ARE REQUIRED TO SUBMIT AN ESSAY SUMMARIZING THEIR EXPERIENCE WITH ATAXIA AND THEIR EFFORTS TO STAY ACTIVE. ALL APPLICATIONS ARE REVIEWED BY A PANEL OF DISABLED ATHLETES, PEOPLE WITH ATAXIA, AND OTHER REPRESENTATIVES OF THE ATAXIA COMMUNITY. GRANTS WILL WERE AWARDED TO A LIMITED NUMBER OF APPLICANTS BASED ON THE FOLLOWING:- DIAGNOSIS - APPLICANTS MUST HAVE BEEN DIAGNOSED WITH SOME FORM OFATAXIA TO QUALIFY;- APPLICANT'S PERCEIVED CHARACTER, DRIVE, AND COMMITMENT TO AN ACTIVELIFESTYLE;- FINANCIAL NEED AND- DETAILED RESEARCH AND KNOWLEDGE OF EQUIPMENT REQUESTED.IN 2013, FARA PARTIALLY FUNDED ADAPTIVE CYCLING EQUIPMENT TO SIX PEOPLE LIVING WITH ATAXIA (4 IN THE US AND 2 INTERNATIONALLY). THE TOTAL FOR EQUIPMENT FUNDED FOR THE DOMESTIC RECIPIENTS DID NOT EXCEED $5,000 NOR DID THE TOTAL FOR THE EQUIPMENT FUNDED FOR THE INTERNATIONAL RECIPIENTS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expenses | $3,245,983 | 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 | 2 | 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 | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | 0 | MembersOrStockholdersInd |
| Election Of Board Members | 0 | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | 0 | LocalChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | 0 | InvestmentInJointVentureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AZ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ND | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| 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 | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 4848796160 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1 |
| City | DOWNINGTOWN | City |
| State | PA | State |
| ZIP Code | 19335 | ZIPCode |
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 | $10,236 |
| 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 | ||
| THOMAS A DECOTIIS PHD | |||||||
| 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 | ||
| LAURA KALICK | |||||||
| 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 | ||
| PETER PITTS | |||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| BERNARD RAVINA | |||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | ||
| JENNIFER FARMER | |||||||
| EXECUTIVE DIRECTOR | 40.00 | Yes (X) | $84,460 | $0 | $7,328 | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $244,460 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $17,564 | 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 | $2,608,852 | FundraisingAmt |
| All Other Contributions | $1,243,648 | AllOtherContributionsAmt |
| Total Contributions | $3,852,500 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $9,955 | TotalRevenueColumnAmt |
| Exclusion | $9,955 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $755,622 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $705,713 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $49,909 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $49,909 | TotalRevenueColumnAmt |
| Exclusion | $49,909 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $608,047 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $2,608,852 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $532,567 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $75,480 | TotalRevenueColumnAmt |
| Exclusion | $75,480 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $3,987,844 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $135,344 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,728,333 | TotalAmt |
| Program Services | $1,728,333 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,077,913 | TotalAmt |
| Program Services | $1,077,913 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $262,024 | TotalAmt |
| Program Services | $201,107 | ProgramServicesAmt |
| Management And General | $17,691 | ManagementAndGeneralAmt |
| Fundraising | $43,226 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $189,953 | TotalAmt |
| Program Services | $95,123 | ProgramServicesAmt |
| Management And General | $10,816 | ManagementAndGeneralAmt |
| Fundraising | $84,014 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $10,500 | TotalAmt |
| Management And General | $10,500 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $15,141 | TotalAmt |
| Program Services | $9,141 | ProgramServicesAmt |
| Fundraising | $6,000 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $36,000 | TotalAmt |
| Program Services | $36,000 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $23,738 | TotalAmt |
| Program Services | $14,244 | ProgramServicesAmt |
| Management And General | $8,395 | ManagementAndGeneralAmt |
| Fundraising | $1,099 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,096 | TotalAmt |
| Program Services | $11,048 | ProgramServicesAmt |
| Management And General | $2,762 | ManagementAndGeneralAmt |
| Fundraising | $8,286 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $71,844 | TotalAmt |
| Program Services | $67,046 | ProgramServicesAmt |
| Management And General | $3,863 | ManagementAndGeneralAmt |
| Fundraising | $935 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,828 | TotalAmt |
| Program Services | $3,258 | ProgramServicesAmt |
| Management And General | $1,570 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $903 | TotalAmt |
| Management And General | $903 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,543 | TotalAmt |
| Management And General | $2,480 | ManagementAndGeneralAmt |
| Fundraising | $2,063 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| CREDIT CARD & BANK FEES | $7,130 | $202 | $1,492 | $5,436 |
| BOOKS, SUBSCRIPTIONS & | $6,078 | $1,153 | $1,595 | $3,330 |
| BUSINESS REGISTRATION F | $5,404 | $1,454 | $3,950 | |
| MISCELLANEOUS | $1,615 | $1,415 | $200 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,409 | TotalAmt |
| Management And General | $1,409 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,469,452 | TotalAmt |
| Program Services | $3,245,983 | ProgramServicesAmt |
| Management And General | $65,130 | ManagementAndGeneralAmt |
| Fundraising | $158,339 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $511,067 | BOYAmt |
| EOY | $1,357,092 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $726,101 | BOYAmt |
| EOY | $277,365 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $77,128 | BOYAmt |
| EOY | $109,720 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $8,551 | BOYAmt |
| EOY | $6,719 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $4,631 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $3,682 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,852 | BOYAmt |
| EOY | $949 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $607,771 | BOYAmt |
| EOY | $836,233 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,100,000 | BOYAmt |
| EOY | $1,100,000 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,032,470 | BOYAmt |
| EOY | $3,688,078 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $264,360 | BOYAmt |
| EOY | $381,693 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $264,360 | BOYAmt |
| EOY | $381,693 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,572,398 | BOYAmt |
| EOY | $2,972,678 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $195,712 | BOYAmt |
| EOY | $333,707 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,768,110 | BOYAmt |
| EOY | $3,306,385 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,032,470 | BOYAmt |
| EOY | $3,688,078 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $518,392 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $19,883 | 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 | $3,433,440 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,980,429 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,831,171 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,174,652 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,460,547 | CurrentTaxYearAmt |
| Total | $16,880,239 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,433,440 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $2,980,429 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $2,831,171 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,174,652 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,460,547 | CurrentTaxYearAmt |
| Total | $16,880,239 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $996,455 | SubstantialContributorsTotAmt |
| Public Support Total170 | $15,883,784 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $4,041 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $57,570 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $12,704 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $21,555 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $9,955 | CurrentTaxYearAmt |
| Total | $105,825 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $16,986,064 | TotalSupportAmt |
| Public Support CY170 | 0.93510 | PublicSupportCY170Pct |
| Public Support PY170 | 0.90990 | 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 | $3,992,919 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,002,019 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $350,101 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $87,525 | 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 Minus1 | $302,630 | CurrentYearMinus1Amt |
| Current Year | $350,101 | CurrentYearAmt |
| Total | $652,731 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $979,097 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $9,100 | CurrentYearMinus1Amt |
| Current Year | $9,100 | CurrentYearAmt |
| Total | $18,200 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus1 | $75,658 | CurrentYearMinus1Amt |
| Current Year | $87,525 | CurrentYearAmt |
| Total | $163,183 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $244,775 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $200 | CurrentYearMinus3Amt |
| Current Year Minus2 | $3,564 | CurrentYearMinus2Amt |
| Current Year Minus1 | $5,100 | CurrentYearMinus1Amt |
| Current Year | $5,100 | CurrentYearAmt |
| Total | $13,964 | TotalAmt |
Schedule D IRS990ScheduleD
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $4,631 | OtherCostOrOtherBasisAmt |
| Depreciation | $3,682 | DepreciationAmt |
| Book Value | $949 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $949 | TotalBookValueLandBuildingsAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | INVESTMENT IN EDISON PHARMACEUTICALS, INC. | Desc |
| Book Value | $1,100,000 | BookValueAmt |
| Method Valuation | C | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $1,100,000 | TotalBookValueProgramRltdAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $4,540,294 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $19,883 | NetUnrealizedGainsInvstAmt |
| Other Revenue | $532,567 | OtherRevenueAmt |
| Revenue Not Reported | $552,450 | RevenueNotReportedAmt |
| Revenue Subtotal | $3,987,844 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $3,987,844 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $4,002,019 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $532,567 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $532,567 | ExpensesNotReportedAmt |
| Expenses Subtotal | $3,469,452 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $3,469,452 | 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 2010, 2011 AND 2012 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 | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| EUROPE | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $722,073 |
| EAST ASIA AND THE PACIFIC | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $355,840 |
| 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 | $1,077,913 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $1,077,913 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (9 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| EUROPE | MEDICAL RESEARCH | $158,600 | WIRE |
| EUROPE | MEDICAL RESEARCH | $100,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $83,519 | WIRE |
| EUROPE | MEDICAL RESEARCH | $70,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $113,473 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $121,508 | WIRE |
| EUROPE | MEDICAL RESEARCH | $50,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $230,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $150,813 | WIRE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Event1 | FARA ENERGY BALL | NameOfEvent1Amt |
| Gross Receipts Event1 | $1,580,782 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,086,378 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $494,404 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $223,806 | OtherDirectExpensesEvent1Amt |
| Name Of Event2 | RIDE ATAXIA PHILADELPHIA | NameOfEvent2Amt |
| Gross Receipts Event2 | $253,058 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $241,183 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $11,875 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $32,488 | OtherDirectExpensesEvent2Amt |
| Gross Receipts Other Events | $1,383,059 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,281,291 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $101,768 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $276,273 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $3,216,899 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $2,608,852 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $608,047 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $532,567 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $532,567 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $75,480 | 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 | AddressLine1 |
| City | DOWNINGTOWN | City |
| State | PA | State |
| ZIP Code | 19335 | ZIPCode |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (23 entries)
| Address Line1USAddress/AddressLine1 | CityUSAddress/City | StateUSAddress/State | ZIP CodeUSAddress/ZIPCode | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2 |
|---|---|---|---|---|---|---|---|---|
| UNIVERSITY OF ROCHESTER | ||||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $205,919 | 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) | $304,310 | MEDICAL RESEARCH | |
| OHIO STATE UNIVERSITY | ||||||||
| 333 W 10TH AVE | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | $4,800 | MEDICAL RESEARCH | |
| SCRIPPS RESEARCH INSTITUTE | ||||||||
| 10550 NORTH TORREY PINES ROAD | LA JOLLA | CA | 92037 | 330435954 | 501(C)(3) | $25,385 | MEDICAL RESEARCH | OSP-TPC7 |
| THE JACKSON LABORATORY | ||||||||
| 600 MAIN STREET | BAR HARBOR | ME | 04609 | 010211513 | 501(C)(3) | $37,189 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES | ||||||||
| 10920 WILSHIRE BLVD 5TH FLOOR | LOS ANGELES | CA | 90024 | 956006143 | 501(C)(3) | $150,082 | MEDICAL RESEARCH | |
| EMORY UNIVERSITY | ||||||||
| 201 DOWMAN DRIVE | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | $21,100 | MEDICAL RESEARCH | |
| UNIVERSITY OF CHICAGO | ||||||||
| 5801 SOUTH ELLIS AVENUE | CHICAGO | IL | 60637 | 362177139 | 501(C)(3) | $2,500 | MEDICAL RESEARCH | |
| UNIVERSITY OF IOWA DEPT OF PEDIATRICS | ||||||||
| 200 HAWKINS DRIVE | IOWA CITY | IA | 52242 | 426004813 | 501(C)(3) | $3,200 | MEDICAL RESEARCH | |
| THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | ||||||||
| 3451 WALNUT STREET RM P 221 | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | $61,441 | MEDICAL RESEARCH | FRANKLIN BLDG |
| INDIANA UNIVERSITY | ||||||||
| 1044 WEST WALNUT | INDIANAPOLIS | IN | 46202 | 356001673 | 501(C)(3) | $100,000 | MEDICAL RESEARCH | |
| REPLIGEN | ||||||||
| 41 SEYON ST | WALTHAM | MA | 02453 | 042729386 | $68,405 | MEDICAL RESEARCH | ||
| UNIVERSITY OF TEXAS MD ANDERSON | ||||||||
| 1515 HOLCOMBE BLVD UNIT 1676 | HOUSTON | TX | 77030 | 746001118 | 501(C)(3) | $30,290 | MEDICAL RESEARCH | |
| UNIVERSITY OF FLORIDA - DEPT OF NEUROLOGY | ||||||||
| L3-100 MCKNIGHT BRAIN INSTITUTE | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $7,400 | MEDICAL RESEARCH | NEWELL DRIVE |
| ALBANY RESEARCH INSTITUTE INC | ||||||||
| 113 HOLLAND AVE | ALBANY | NY | 12208 | 141716021 | 501(C)(3) | $90,292 | 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) | $89,335 | MEDICAL RESEARCH | |
| REGENTS OF THE UNIVERSITY OF MINNESOTA | ||||||||
| 200 SE OAK ST 600 | MINNEAPOLIS | MN | 55455 | 416007513 | 501(C)(3) | $128,338 | MEDICAL RESEARCH | |
| RETROTOPE | ||||||||
| 12133 FOOTHILL LAN | LOS ALTOS HILL | CA | 94022 | 204958003 | $44,250 | MEDICAL RESEARCH | ||
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | ||||||||
| 445 E 69TH ST | NEW YORK | NY | 10021 | 131623978 | 501(C)(3) | $95,497 | MEDICAL RESEARCH | |
| FES13 CONFERENCE | ||||||||
| 15600 HAMPTON STREET ANNEX RM 208 | COLUMBIA | SC | 29208 | 576001153 | 501(C)(3) | $3,600 | 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 | $10,236 | NontaxableBenefitsFilingOrgAmt |
| Nontaxable Benefits Rltd Orgs | $0 | NontaxableBenefitsRltdOrgsAmt |
| Total Compensation Filing Org | $170,236 | 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 | 3 | ContributionCnt |
| Noncash Contributions Rpt F990 | $44,818 | 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 (8 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 4A CONTINUED | 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 700 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 2013 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 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. |