FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2012
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2012-01-01 to 2012-12-31
- Filed
- 2013-05-03
- IRS object ID
- 201341239349301059
- Schema version
- 2012v2.1
- 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) |
|---|---|---|
| Timestamp | 2013-05-03T14:50:22-05:00 | Timestamp |
| Tax Period End Date | 2012-12-31 | TaxPeriodEndDate |
Preparer Firm PreparerFirm
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 231518888 | EIN |
Preparer Firm Business Name PreparerFirmBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MAILLIE FALCONIERO & COMPANY LLP | BusinessNameLine1 |
Preparer Firm US Address PreparerFirmUSAddress
| 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 | ReturnType |
| Tax Period Begin Date | 2012-01-01 | TaxPeriodBeginDate |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 522122720 | EIN |
Name Name
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FRIEDREICH'S ATAXIA RESEARCH ALLIANCE | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Control | FRIE | NameControl |
| Phone | 4848796160 | Phone |
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 |
Officer Officer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | JENNIFER FARMER | Name |
| Title | EXECUTIVE DIRECTOR | Title |
| Phone | 4848796160 | Phone |
| Date Signed | 2013-04-17 | DateSigned |
| Authorize Third Party | 1 | AuthorizeThirdParty |
Preparer Preparer
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name | EDWARD FRONCZKOWSKI CPA | Name |
| PTIN | P01259092 | PTIN |
| Phone | 6106964353 | Phone |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax Year | 2012 | TaxYear |
| Build TS | 2016-03-07 17:11:31Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Principal Officer Person | JENNIFER FARMER | NameOfPrincipalOfficerPerson |
Address Principal Officer US AddressPrincipalOfficerUS
| 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 | 3846571 | GrossReceipts |
| Group Return For Affiliates | 0 | GroupReturnForAffiliates |
| Organization501c3 | X | Organization501c3 |
| Web Site | WWW.CUREFA.ORG | WebSite |
| Type Of Organization Corporation | X | TypeOfOrganizationCorporation |
| Year Formation | 1998 | YearFormation |
| State Legal Domicile | VA | StateLegalDomicile |
| Activity Or Mission Description | TO TREAT AND CURE FRIEDREICH'S ATAXIA BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. | ActivityOrMissionDescription |
| Nbr Voting Members Governing Body | 16 | NbrVotingMembersGoverningBody |
| Nbr Independent Voting Members | 15 | NbrIndependentVotingMembers |
| Total Nbr Employees | 6 | TotalNbrEmployees |
| Total Nbr Volunteers | 350 | TotalNbrVolunteers |
| Total Gross UBI | 0 | TotalGrossUBI |
| Net Unrelated Business Txbl Income | 0 | NetUnrelatedBusinessTxblIncome |
| Contributions Grants Prior Year | 2831171 | ContributionsGrantsPriorYear |
| Contributions Grants Current Year | 3174652 | ContributionsGrantsCurrentYear |
| Program Service Revenue Prior Year | 0 | ProgramServiceRevenuePriorYear |
| Program Service Revenue CY | 0 | ProgramServiceRevenueCY |
| Investment Income Prior Year | 12704 | InvestmentIncomePriorYear |
| Investment Income Current Year | 21555 | InvestmentIncomeCurrentYear |
| Other Revenue Prior Year | 133726 | OtherRevenuePriorYear |
| Other Revenue Current Year | 127578 | OtherRevenueCurrentYear |
| Total Revenue Prior Year | 2977601 | TotalRevenuePriorYear |
| Total Revenue Current Year | 3323785 | TotalRevenueCurrentYear |
| Grants And Similar Amnts Prior Year | 2484153 | GrantsAndSimilarAmntsPriorYear |
| Grants And Similar Amnts CY | 2673157 | GrantsAndSimilarAmntsCY |
| Benefits Paid To Members Prior Year | 0 | BenefitsPaidToMembersPriorYear |
| Benefits Paid To Members CY | 0 | BenefitsPaidToMembersCY |
| Salaries Etc Prior Year | 359219 | SalariesEtcPriorYear |
| Salaries Etc Current Year | 420293 | SalariesEtcCurrentYear |
| Total Prof Fundrsng Exp Prior Year | 0 | TotalProfFundrsngExpPriorYear |
| Total Prof Fundrsng Exp CY | 0 | TotalProfFundrsngExpCY |
| Total Fundrsng Exp Current Year | 149523 | TotalFundrsngExpCurrentYear |
| Other Expense Prior Year | 200872 | OtherExpensePriorYear |
| Other Expenses Current Year | 167762 | OtherExpensesCurrentYear |
| Total Expenses Prior Year | 3044244 | TotalExpensesPriorYear |
| Total Expenses Current Year | 3261212 | TotalExpensesCurrentYear |
| Revenues Less Expenses Prior Year | -66643 | RevenuesLessExpensesPriorYear |
| Revenues Less Expenses CY | 62573 | RevenuesLessExpensesCY |
| Total Assets BOY | 2783758 | TotalAssetsBOY |
| Total Assets EOY | 3032470 | TotalAssetsEOY |
| Total Liabilities BOY | 170510 | TotalLiabilitiesBOY |
| Total Liabilities EOY | 264360 | TotalLiabilitiesEOY |
| Net Assets Or Fund Balances BOY | 2613248 | NetAssetsOrFundBalancesBOY |
| Net Assets Or Fund Balances EOY | 2768110 | NetAssetsOrFundBalancesEOY |
| Info In Schedule O Part III | X | InfoInScheduleOPartIII |
| Mission Description | 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. | MissionDescription |
| Significant New Program Services | 0 | SignificantNewProgramServices |
| Significant Change | 0 | SignificantChange |
| Expense | 2835082 | Expense |
| Grants | 2673157 | Grants |
| Description | 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 2012. IN TOTAL, FARA PROVIDED >$2.6M IN BASIC AND TRANSLATIONAL AND CLINICAL RESEARCH GRANTS, SCIENTIFIC CONFERENCE SUPPORT AND CLINICAL RESEARCH INFRASTRUCTURE FUNDING. OVER THE PAST YEAR, >25 NEW GRANT APPLICATIONS WERE SUBMITTED AND AFTER RIGOROUS PEER REVIEW, 17 WERE DETERMINED MERITORIOUS AND AWARDED FUNDING IN 2012 AND EARLY 2013. IN ADDITION, BASED ON EXCELLENT PROGRESS, CONTINUATION FUNDING WAS PROVIDED FOR 9 PROJECTS, FOR A TOTAL OF 26 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 2012 FARA FUNDED GRANTS FOLLOWS BELOW: - NEW INVESTIGATOR AWARD: DR. VIJAYENDRAN CHANDRAN, UNIVERSITY OF CALIFORNIA LOS ANGELESA SENIOR POSTDOCTORAL FELLOW WITH DR. DANIEL GESCHWIND AT UCLA, DR CHANDRAN IS DEVELOPING AN INDUCIBLE MOUSE MODEL OF FA SUCH THAT FRATAXIN LEVELS CAN BE REDUCED AND RESTORED. THIS MODEL HAS THE POTENTIAL TO COMPLEMENT AND EXTEND THE CAPABILITIES OF EXISTING FA MOUSE MODELS FOR ADVANCING OUR UNDERSTANDING OF THE PATHOGENESIS OF FA AND THE FUNCTION OF FRATAXIN, AS WELL AS FOR TESTING PROMISING THERAPEUTIC AGENTS. - KEITH MICHAEL ANDRUS MEMORIAL AWARD (FOR CARDIAC RESEARCH): DR. FRANCESCO SACCA, UNIVERSITY FEDERICO II OF NAPLES, ITALYDR. SACCA, TOGETHER WITH DR. ALESSANDRO FILLA, IS CONDUCTING A PHASE II CLINICAL TRIAL TO TEST THE EFFICACY OF EPO ON EXERCISE CAPACITY IN PATIENTS WITH FA. IN THIS RANDOMIZED, DOUBLE-BLIND, PLACEBO-CONTROLLED TRIAL, EPO IS BEING ADMINISTERED EVERY 12 WEEKS FOR A TOTAL DURATION OF 48 WEEKS. IN ADDITION TO EXERCISE CAPACITY, THE CLINICAL PROTOCOL ALSO INCLUDES MONITORING OF FRATAXIN LEVELS, CARDIOMYOPATHY, VASCULAR REACTIVITY, CLINICAL PROGRESSION, AND SAFETY. - DRUG DISCOVERY PROJECT AT STATEGICS INC., MENLO PARK, CA (PRINCIPAL INVESTIGATOR: DR. JUHA PUNNONEN)THIS STUDY IS EVALUATING IMPROVED EPO MIMETICS IN FA CELL AND MOUSE MODELS TO FOLLOW UP ON PREVIOUS FINDINGS THAT THESE COMPOUNDS INCREASE FRATAXIN LEVELS. THE GOAL IS TO IDENTIFY AN OPTIMAL THERAPEUTIC CANDIDATE TO ADVANCE TO CLINICAL TRIAL. - PRE-CLINICAL DEVELOPMENT OF HDAC INHIBITORS AT REPLIGEN CORPORATION, WALTHAM, MA(PRINCIPAL INVESTIGATOR: DR. JAMES RUSCHE)THIS STUDY WILL COMPLETE A THOROUGH EVALUATION OF A FOLLOW-ON HDACI CANDIDATE (RGFP963/RG3250) TO THE HDAC INHIBITOR, RG2833, FOR WHICH A PHASE I CLINICAL TRIAL IS TAKING PLACE IN ITALY. THE FOLLOW-ON CANDIDATE HAS SOME SPECIFIC QUALITIES THAT WILL LIKELY MAKE IT A BETTER CLINICAL CANDIDATE, E.G., CROSSING THE BLOOD BRAIN BARRIER BETTER (BETTER PENETRATION TO THE NERVOUS SYSTEM) AND METABOLIC STABILITY. - THERAPEUTIC COMPOUND IDENTIFICATION BY DR. MAREK NAPIERALA , UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER, HOUSTONDR. NAPIERALA RECEIVED FUNDING TO CHARACTERIZE POTENTIALLY THERAPEUTIC COMPOUNDS IDENTIFIED USING A HIGH THROUGHPUT SCREENING (HTS) ASSAY THAT DETECTS COMPOUNDS CAPABLE OF ALLEVIATING GAA REPEAT-INDUCED SILENCING. USING DR. NAPIERALA'S ASSAY, HTS OF 360,000 COMPOUNDS WAS CARRIED OUT THROUGH THE NIH MOLECULAR LIBRARIES SCREENING CENTERS NETWORK; HE IS NOW EVALUATING SEVERAL PROMISING HITS FOR THEIR EFFECT ON FRATAXIN EXPRESSION IN FA FIBROBLASTS AND NEURONAL CELLS DIFFERENTIATED FROM INDUCED PLURIPOTENT STEM CELLS. - 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 : FARA MANAGES 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/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 SIX YEARS OF NATURAL HISTORY DATA (ONGOING) IN MORE THAN 650 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 2012 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 | Description |
Activity2 Activity2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 71283 | Expense |
| Description | 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. FARA ORGANIZED A CONFERENCE IN MAY 2012 IN PHILADELPHIA, TO BRING FA SCIENTISTS FROM AROUND THE WORLD WHO ARE WORKING ON MOUSE MODELS, INDUCED PLURIPOTENT STEM CELL (IPS) MODELS OF FA, AND GENE THERAPY APPROACHES. RESEARCHERS PRESENTED THEIR LATEST DATA (NOT YET PUBLISHED OR PUBLICLY AVAILABLE) TO HELP ADDRESS GAPS IN THE CURRENT MODELS AND SHARE NEW DISCOVERIES AND TECHNOLOGIES.DR. CAT LUTZ FROM JAX LABS REPORTED ON A SIGNIFICANT BREAKTHROUGH IN A COLLABORATIVE PROJECT, FUNDED BY FARA, TO PRODUCE EXTENSIVE CHARACTERIZATION OF SEVERAL DIFFERENT FA MOUSE MODELS. THEY IDENTIFIED A REPRODUCIBLE AND MEASURABLE ATAXIA (SIMILAR TO WHAT WE SEE IN INDIVIDUALS WITH FA) IN ONE OF THE MODELS. THIS IS SIGNIFICANT BECAUSE IT GIVES US AN ANIMAL MODEL FOR TESTING THE EFFECTS OF VARIOUS DRUGS ON THE NEUROLOGIC PHENOTYPE IN FA. SEVERAL OTHER INVESTIGATORS REPORTED ON ONGOING EFFORTS TO CONTINUE TO IMPROVE UPON THESE MODELS. FOR EXAMPLE, THE CURRENT MOUSE MODELS ARE STILL RELATIVELY MILD COMPARED TO HUMANS (SYMPTOMS ARE MILD AND SLOW TO APPEAR) - IF NEWER MODELS HAD LOWER LEVELS OF FRATAXIN OR MORE CARDIAC SYMPTOMS, AND SHOWED SYMPTOMS EARLIER IN LIFE, OUR ABILITY TO SCREEN DRUG CANDIDATES WOULD BE ENHANCED.THREE DIFFERENT RESEARCH GROUPS PRESENTED ON UNIQUE APPROACHES TO GENE THERAPY FOR FA. EACH GROUP IS EVALUATING DIFFERENT APPROACHES OF DELIVERY TO GIVE INDIVIDUALS WITH FA A FULLY FUNCTIONAL COPY OF THE FRATAXIN GENE. DR. HELENE PUCCIO SHARED VERY ENCOURAGING DATA THAT SHOWED HOW SHE WAS ABLE TO RESCUE A SEVERE FORM OF CARDIOMYOPATHY IN AN FA MOUSE WITH FRATAXIN "KNOCKED-OUT" IN THE HEART. | Description |
Activity3 Activity3
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | 146242 | Expense |
| Description | 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. IN 2012, FARA WAS ABLE TO PARTNER WITH SEVERAL CELEBRITIES TO CREATE VIDEO-BASED AWARENESS CAMPAIGNS LEVERAGED THROUGH SOCIAL MEDIA.JAMES BLAKE-JAMES BLAKE & KYLE BRYANT- CONFIDENCE IN FA RESEARCHHTTP://WWW.YOUTUBE.COM/WATCH?V=GAF2MU4PQCYJAMES BLAKE-JAMES & THOMAS BLAKE- OVERCOMING ADVERSITYHTTP://WWW.YOUTUBE.COM/WATCH?V=5-ILHACOIRKJOHN ISNER - JOHN ISNER & KYLE BRYANT DISCUSS THE VALUE OF DETERMINATION & PERSEVERANCE - HTTP://WWW.YOUTUBE.COM/WATCH?V=5P7B31BUK18EDUCATIONAL SYMPOSIAFARA 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 8TH, 2012. 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 NEARLY 1000 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.AMBASSADOR PROGRAMALSO, 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 2012, THE GROUP GREW TO >15 PARTICIPANTS. MANY OF THEM SHARED THEIR STORIES AT FUNDRAISING EVENTS, 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, ATAXIANS, 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 OF ATAXIA TO QUALIFY; - APPLICANT'S PERCEIVED CHARACTER, DRIVE, AND COMMITMENT TO AN ACTIVE LIFESTYLE; - FINANCIAL NEED AND - DETAILED RESEARCH AND KNOWLEDGE OF EQUIPMENT REQUESTED.IN 2012, FARA AWARDED PARTIAL FUNDING FOR ADAPTIVE CYCLING EQUIPMENT TO SEVEN PEOPLE LIVING WITH ATAXIA. | Description |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Expense | 3052607 | TotalProgramServiceExpense |
| Described In501 C3 | 1 | DescribedIn501C3 |
| Schedule B Required | 1 | ScheduleBRequired |
| Political Activities | 0 | PoliticalActivities |
| Lobbying Activities | 1 | LobbyingActivities |
| Subject To Proxy Tax | 0 | SubjectToProxyTax |
| Donor Advised Funds | 0 | DonorAdvisedFunds |
| Conservation Easements | 0 | ConservationEasements |
| Collections Of Art | 0 | CollectionsOfArt |
| Credit Counseling | 0 | CreditCounseling |
| Term Or Permanent Endowments | 0 | TermOrPermanentEndowments |
| Report Land Bldg Equip | 1 | ReportLandBldgEquip |
| Report Invest Oth Securities | 0 | ReportInvestOthSecurities |
| Report Prog Rel Invest | 1 | ReportProgRelInvest |
| Report Other Assets | 0 | ReportOtherAssets |
| Report Other Liabilities | 0 | ReportOtherLiabilities |
| Report Fin48 Footnote | 1 | ReportFin48Footnote |
| Independent Audit Financial Stmt | 1 | IndependentAuditFinancialStmt |
| Consolidated Audit Financial Stmt | 0 | ConsolidatedAuditFinancialStmt |
| School | 0 | School |
| Foreign Office | 0 | ForeignOffice |
| Foreign Activities | 1 | ForeignActivities |
| More Than5000 K To Organizations | 1 | MoreThan5000KToOrganizations |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividuals |
| Professional Fundraising | 0 | ProfessionalFundraising |
| Fundraising Activities | 1 | FundraisingActivities |
| Gaming | 0 | Gaming |
| Hospital | 0 | Hospital |
| Grants To Organizations | 1 | GrantsToOrganizations |
| Grants To Individuals | 0 | GrantsToIndividuals |
| Schedule J Required | 1 | ScheduleJRequired |
| Tax Exempt Bonds | 0 | TaxExemptBonds |
| Excess Benefit Transaction | 0 | ExcessBenefitTransaction |
| Prior Excess Benefit Transaction | 0 | PriorExcessBenefitTransaction |
| Loan To Officer Or DQP | 0 | LoanToOfficerOrDQP |
| Grant To Related Person | 0 | GrantToRelatedPerson |
| Bsnss Rltnshp With Organization | 0 | BsnssRltnshpWithOrganization |
| Bsnss Rltnshp Thru Family Member | 0 | BsnssRltnshpThruFamilyMember |
| Officer Entity With Bsnss Rltnshp | 0 | OfficerEntityWithBsnssRltnshp |
| Deductible Non Cash Contributions | 1 | DeductibleNonCashContributions |
| Deductible Contributions Of Art | 0 | DeductibleContributionsOfArt |
| Terminated | 0 | Terminated |
| Partial Liquidation | 0 | PartialLiquidation |
| Disregarded Entity | 0 | DisregardedEntity |
| Related Entity | 0 | RelatedEntity |
| Related Org Controlled Entity | 0 | RelatedOrgControlledEntity |
| Transfers To Exempt Non Chrtbl Org | 0 | TransfersToExemptNonChrtblOrg |
| Activities Conducted Partnership | 0 | ActivitiesConductedPartnership |
| Schedule O Required | 1 | ScheduleORequired |
| Number Forms Transmitted With1096 | 2 | NumberFormsTransmittedWith1096 |
| Number W2 G Included | 0 | NumberW2GIncluded |
| Compliance With Backup Witholding | 1 | ComplianceWithBackupWitholding |
| Number Of Employees | 6 | NumberOfEmployees |
| Employment Tax Returns Filed | 1 | EmploymentTaxReturnsFiled |
| Unrelated Business Income | 0 | UnrelatedBusinessIncome |
| Foreign Financial Account | 0 | ForeignFinancialAccount |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTrans |
| Taxable Party Notification | 0 | TaxablePartyNotification |
| Non Deductible Contributions | 0 | NonDeductibleContributions |
| Quid Pro Quo Contributions | 1 | QuidProQuoContributions |
| Quid Pro Quo Disclosure | 1 | QuidProQuoDisclosure |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOf |
| Funds To Pay Premiums | 0 | FundsToPayPremiums |
| Premiums Paid | 0 | PremiumsPaid |
| Indoor Tanning Services | 0 | IndoorTanningServices |
| Info In Schedule O Part VI | X | InfoInScheduleOPartVI |
| Nbr Voting Governing Body Members | 16 | NbrVotingGoverningBodyMembers |
| Number Independent Voting Members | 15 | NumberIndependentVotingMembers |
| Family Or Business Relationship | 0 | FamilyOrBusinessRelationship |
| Delegation Of Management Duties | 0 | DelegationOfManagementDuties |
| Changes To Organizing Docs | 0 | ChangesToOrganizingDocs |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuse |
| Members Or Stockholders | 0 | MembersOrStockholders |
| Election Of Board Members | 0 | ElectionOfBoardMembers |
| Decisions Subject To Approval | 0 | DecisionsSubjectToApproval |
| Minutes Of Governing Body | 1 | MinutesOfGoverningBody |
| Minutes Of Committees | 1 | MinutesOfCommittees |
| Officer Mailing Address | 0 | OfficerMailingAddress |
| Local Chapters | 0 | LocalChapters |
| Form990 Provided To Governing Body | 1 | Form990ProvidedToGoverningBody |
| Conflict Of Interest Policy | 1 | ConflictOfInterestPolicy |
| Annual Disclosure Covered Persons | 1 | AnnualDisclosureCoveredPersons |
| Regular Monitoring Enforcement | 1 | RegularMonitoringEnforcement |
| Whistleblower Policy | 1 | WhistleblowerPolicy |
| Document Retention Policy | 1 | DocumentRetentionPolicy |
| Compensation Process CEO | 1 | CompensationProcessCEO |
| Compensation Process Other | 1 | CompensationProcessOther |
| Investment In Joint Venture | 0 | InvestmentInJointVenture |
| States Where Copy Of Return Is Filed | AL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AK | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AZ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | AR | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CO | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | CT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | FL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | GA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | IL | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KS | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | KY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | ME | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MD | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MS | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MS | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MO | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NH | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NJ | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NM | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NY | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | NC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | ND | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OH | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OK | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | OR | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | PA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | RI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | SC | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | TN | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | UT | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | VA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WA | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WV | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | WI | StatesWhereCopyOfReturnIsFiled |
| States Where Copy Of Return Is Filed | MA | StatesWhereCopyOfReturnIsFiled |
| Own Website | X | OwnWebsite |
| Other Website | X | OtherWebsite |
| Upon Request | X | UponRequest |
The Books Are In Care Of TheBooksAreInCareOf
Name Business NameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | JENNIFER FARMER | BusinessNameLine1 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Telephone Number | 4848796160 | TelephoneNumber |
Address US AddressUS
| 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 Form990PartVIISectionA (17 entries)
| TitleTitle | Average Hours Per WeekAverageHoursPerWeek | Individual Trustee Or DirectorIndividualTrusteeOrDirector | OfficerOfficer | Highest Compensated EmployeeHighestCompensatedEmployee | Reportable Comp From OrganizationReportableCompFromOrganization | Reportable Comp From Related OrgsReportableCompFromRelatedOrgs | Other CompensationOtherCompensation |
|---|---|---|---|---|---|---|---|
| RONALD BARTEK | |||||||
| PRESIDENT/DIRECTOR | 40.00 | X | X | X | 160000 | 0 | 0 |
| EDWARD RAMSEY | |||||||
| CHAIRMAN | 0.00 | X | X | 0 | 0 | 0 | |
| MARILYN E DOWNING | |||||||
| SECRETARY | 0.00 | X | X | 0 | 0 | 0 | |
| RUTH DEWITT | |||||||
| TREASURER | 0.00 | X | X | 0 | 0 | 0 | |
| JENNIFER GOOD | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| PAUL AVERY | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| PETER CRISP | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| THOMAS A DECOTIIS PHD | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| DR EARL GILLER | |||||||
| SCIENTIFIC DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| DR HOLLY HEDRICK | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| NICHOLAS A JOHNSON | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| LAURA KALICK | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| STEVE KLASKO | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| BILL ALEFANTIS | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| PETER PITTS | |||||||
| DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| BERNARD RAVINA | |||||||
| SCIENTIFIC DIRECTOR | 0.00 | X | 0 | 0 | 0 | ||
| JENNIFER FARMER | |||||||
| EXECUTIVE DIRECTOR | 40.00 | X | 84460 | 0 | 0 | ||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | 244460 | TotalReportableCompFromOrg |
| Total Reportable Comp Frm Rltd Orgs | 0 | TotalReportableCompFrmRltdOrgs |
| Total Other Compensation | 0 | TotalOtherCompensation |
| Number Individuals GT100 K | 1 | NumberIndividualsGT100K |
| Formers Listed | 0 | FormersListed |
| Total Comp GT150 K | 1 | TotalCompGT150K |
| Compensation From Other Sources | 0 | CompensationFromOtherSources |
| Number Of Contractors GT100 K | 0 | NumberOfContractorsGT100K |
| Fundraising Events | 2314248 | FundraisingEvents |
| All Other Contributions | 860404 | AllOtherContributions |
| Total Contributions | 3174652 | TotalContributions |
Investment Income InvestmentIncome
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 21555 | TotalRevenueColumn |
| Exclusion | $21,555 | ExclusionAmount |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Income Fundraising Events | 650364 | GrossIncomeFundraisingEvents |
| Cntrbtns Rprtd Fundraising Events | 2314248 | CntrbtnsRprtdFundraisingEvents |
| Fundraising Direct Expenses | 522786 | FundraisingDirectExpenses |
Net Income From Fundraising Events NetIncomeFromFundraisingEvents
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 127578 | TotalRevenueColumn |
| Exclusion | $127,578 | ExclusionAmount |
Total Revenue TotalRevenue
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | 3323785 | TotalRevenueColumn |
| Related Or Exempt Function Income | 0 | RelatedOrExemptFunctionIncome |
| Unrelated Business Revenue | 0 | UnrelatedBusinessRevenue |
| Exclusion | $149,133 | ExclusionAmount |
Grants To Domestic Orgs GrantsToDomesticOrgs
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 1827527 | Total |
| Program Services | 1827527 | ProgramServices |
Foreign Grants ForeignGrants
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 845630 | Total |
| Program Services | 845630 | ProgramServices |
Comp Current Officers Directors CompCurrentOfficersDirectors
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 244460 | Total |
| Program Services | 187568 | ProgramServices |
| Management And General | 16446 | ManagementAndGeneral |
| Fundraising | 40446 | Fundraising |
Other Salaries And Wages OtherSalariesAndWages
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 131557 | Total |
| Program Services | 73674 | ProgramServices |
| Management And General | 6032 | ManagementAndGeneral |
| Fundraising | 51851 | Fundraising |
Other Employee Benefits OtherEmployeeBenefits
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 10752 | Total |
| Program Services | 7470 | ProgramServices |
| Management And General | 643 | ManagementAndGeneral |
| Fundraising | 2639 | Fundraising |
Payroll Taxes PayrollTaxes
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 33524 | Total |
| Program Services | 23291 | ProgramServices |
| Management And General | 2004 | ManagementAndGeneral |
| Fundraising | 8229 | Fundraising |
Fees For Services Legal FeesForServicesLegal
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 1050 | Total |
| Fundraising | 1050 | Fundraising |
Fees For Services Accounting FeesForServicesAccounting
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 9900 | Total |
| Management And General | 9900 | ManagementAndGeneral |
Fees For Services Other FeesForServicesOther
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 7383 | Total |
| Program Services | 1135 | ProgramServices |
| Management And General | 29 | ManagementAndGeneral |
| Fundraising | 6219 | Fundraising |
Advertising Advertising
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 8048 | Total |
| Program Services | 8048 | ProgramServices |
Office Expenses OfficeExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 18477 | Total |
| Program Services | 10460 | ProgramServices |
| Management And General | 7642 | ManagementAndGeneral |
| Fundraising | 375 | Fundraising |
Travel Travel
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 51715 | Total |
| Program Services | 46502 | ProgramServices |
| Management And General | 3590 | ManagementAndGeneral |
| Fundraising | 1623 | Fundraising |
Conferences Meetings ConferencesMeetings
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 13442 | Total |
| Program Services | 8637 | ProgramServices |
| Management And General | 4805 | ManagementAndGeneral |
Depreciation Depletion DepreciationDepletion
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 779 | Total |
| Management And General | 779 | ManagementAndGeneral |
Insurance Insurance
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 3333 | Total |
| Management And General | 3333 | ManagementAndGeneral |
Other Expenses OtherExpenses (4 entries)
| DescriptionDescription | TotalTotal | Program ServicesProgramServices | Management And GeneralManagementAndGeneral | FundraisingFundraising |
|---|---|---|---|---|
| BOOKS, SUBSCRIPTIONS & | 25241 | 1697 | 928 | 22616 |
| FACILITIES AND EQUIPMEN | 19299 | 9650 | 2412 | 7237 |
| BUSINESS REGISTRATION F | 4315 | 900 | 25 | 3390 |
| CREDIT CARD & BANK FEES | 3733 | 40 | 275 | 3418 |
All Other Expenses AllOtherExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 1047 | Total |
| Program Services | 378 | ProgramServices |
| Management And General | 239 | ManagementAndGeneral |
| Fundraising | 430 | Fundraising |
Total Functional Expenses TotalFunctionalExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | 3261212 | Total |
| Program Services | 3052607 | ProgramServices |
| Management And General | 59082 | ManagementAndGeneral |
| Fundraising | 149523 | Fundraising |
Cash Non Interest Bearing CashNonInterestBearing
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 287214 | BOY |
| EOY | 511067 | EOY |
Savings And Temp Cash Investments SavingsAndTempCashInvestments
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 687079 | BOY |
| EOY | 726101 | EOY |
Accounts Receivable AccountsReceivable
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 124538 | BOY |
| EOY | 77128 | EOY |
Prepaid Expenses Deferred Charges PrepaidExpensesDeferredCharges
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 5144 | BOY |
| EOY | 8551 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Buildings Equipment Basis | 4631 | LandBuildingsEquipmentBasis |
| Land Bldg Equipment Accum Deprec | 2779 | LandBldgEquipmentAccumDeprec |
Land Buildings Equipment Basis Net LandBuildingsEquipmentBasisNet
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1794 | BOY |
| EOY | 1852 | EOY |
Investments Pub Traded Securities InvestmentsPubTradedSecurities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 577989 | BOY |
| EOY | 607771 | EOY |
Investments Program Related InvestmentsProgramRelated
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 1100000 | BOY |
| EOY | 1100000 | EOY |
Total Assets TotalAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2783758 | BOY |
| EOY | 3032470 | EOY |
Accounts Payable Accrued Expenses AccountsPayableAccruedExpenses
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 170510 | BOY |
| EOY | 264360 | EOY |
Total Liabilities TotalLiabilities
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 170510 | BOY |
| EOY | 264360 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Follow SFAS117 | X | FollowSFAS117 |
Unrestricted Net Assets UnrestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2468579 | BOY |
| EOY | 2572398 | EOY |
Temporarily Restricted Net Assets TemporarilyRestrictedNetAssets
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 144669 | BOY |
| EOY | 195712 | EOY |
Total Net Assets Fund Balances TotalNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2613248 | BOY |
| EOY | 2768110 | EOY |
Total Liab Net Assets Fund Balances TotalLiabNetAssetsFundBalances
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | 2783758 | BOY |
| EOY | 3032470 | EOY |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | X | InfoInScheduleOPartXI |
| Reconcilation Revenue Expenses | 62573 | ReconcilationRevenueExpenses |
| Reconciliation Unrealized Invest | 39773 | ReconciliationUnrealizedInvest |
| Reconcilation Other Changes | 52516 | ReconcilationOtherChanges |
| Info In Schedule O Part XII | X | InfoInScheduleOPartXII |
| Method Of Accounting Accrual | X | MethodOfAccountingAccrual |
| Accountant Compile Or Review | 0 | AccountantCompileOrReview |
| FS Audited | 1 | FSAudited |
FS Audited Basis FSAuditedBasis
| Field | Value | IRS element (for citing) |
|---|---|---|
| Financial Statement Separate | X | FinancialStatementSeparate |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | 1 | AuditCommittee |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequired |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Publicly Supported Org170b1 Avi | X | PubliclySupportedOrg170b1Avi |
Gifts Grants Contrib Received170 GiftsGrantsContribReceived170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 1929438 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 3433440 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 2980429 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 2831171 | CurrentTaxYearMinus1Year |
| Current Tax Year | 3174652 | CurrentTaxYear |
| Total | 14349130 | Total |
Total170 Total170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 1929438 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 3433440 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 2980429 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 2831171 | CurrentTaxYearMinus1Year |
| Current Tax Year | 3174652 | CurrentTaxYear |
| Total | 14349130 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Amounts Subst Contributors Total | 1182492 | AmountsSubstContributorsTotal |
| Public Support Total170 | 13166638 | PublicSupportTotal170 |
Gross Investment Income170 GrossInvestmentIncome170
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | 25162 | CurrentTaxYearMinus4Years |
| Current Tax Year Minus3 Years | 4041 | CurrentTaxYearMinus3Years |
| Current Tax Year Minus2 Years | 57570 | CurrentTaxYearMinus2Years |
| Current Tax Year Minus1 Year | 12704 | CurrentTaxYearMinus1Year |
| Current Tax Year | 21555 | CurrentTaxYear |
| Total | 121032 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | 14470162 | TotalSupport |
| Gross Receipts From Admissions Etc | 25809 | GrossReceiptsFromAdmissionsEtc |
| Public Support Pertcentage170 | 0.90990 | PublicSupportPertcentage170 |
| Public Support Pertcent Prior Year | 0.89220 | PublicSupportPertcentPriorYear |
| Thirty Three Percnt Tests CY170 | X | ThirtyThreePercntTestsCY170 |
Schedule B IRS990ScheduleB
Contributor Info ContributorInfo
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor Number | RESTRICTED | ContributorNumber |
Contributor Name Business ContributorNameBusiness
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor Address US ContributorAddressUS
| 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) |
|---|---|---|
| Aggregate Contributions | RESTRICTED | AggregateContributions |
Schedule C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Amt Of4955 Tax | 0 | AmtOf4955Tax |
| Amt Of4955 Tax On Managers | 0 | AmtOf4955TaxOnManagers |
Total Grassroots Lobbying TotalGrassrootsLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 5100 | FilingOrganizationsTotals |
Total Direct Lobbying TotalDirectLobbying
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 4000 | FilingOrganizationsTotals |
Total Lobbying Expenditures TotalLobbyingExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 9100 | FilingOrganizationsTotals |
Other Exempt Purpose Expenditures OtherExemptPurposeExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 3043507 | FilingOrganizationsTotals |
Total Exempt Purpose Expenditures TotalExemptPurposeExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 3052607 | FilingOrganizationsTotals |
Lobbying Nontaxable LobbyingNontaxableAmount
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 302630 | FilingOrganizationsTotals |
Grassroots Nontaxable GrassrootsNontaxableAmount
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 75658 | FilingOrganizationsTotals |
Tot Lobbying Grassroot Minus Non Tx TotLobbyingGrassrootMinusNonTx
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 0 | FilingOrganizationsTotals |
Tot Lobby Expend Mns Lobbying Nontx TotLobbyExpendMnsLobbyingNontx
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Totals | 0 | FilingOrganizationsTotals |
Lobbying Nontaxable Amount2 LobbyingNontaxableAmount2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year | 302630 | CurrentYear |
| Total | 302630 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $453,945 | LobbyingCeilingAmount |
Total Lobbying Expenditures2 TotalLobbyingExpenditures2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year | 9100 | CurrentYear |
| Total | 9100 | Total |
Grassroots Nontaxable Amount2 GrassrootsNontaxableAmount2
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year | 75658 | CurrentYear |
| Total | 75658 | Total |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $113,487 | GrassrootsCeilingAmount |
Grassroots Lobbying Expenditures GrassrootsLobbyingExpenditures
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus2 | 200 | CurrentYearMinus2 |
| Current Year Minus1 | 3564 | CurrentYearMinus1 |
| Current Year | 5100 | CurrentYear |
| Total | 8864 | Total |
Schedule D IRS990ScheduleD
Other Land Buildings OtherLandBuildings
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | 4631 | OtherCostOrOtherBasis |
| Depreciation | 2779 | Depreciation |
| Book Value | 1852 | BookValue |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Book Value Land Buildings | 1852 | TotalOfBookValueLandBuildings |
Investments Program Related InvestmentsProgramRelated
| Field | Value | IRS element (for citing) |
|---|---|---|
| Description | INVESTMENT IN EDISON PHARMACEUTICALS, INC. | Description |
| Book Value | 1100000 | BookValue |
| Method Of Valuation | C | MethodOfValuation |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Of Book Value Program Related | 1100000 | TotalOfBookValueProgramRelated |
| Footnote In Part XIII | X | FootnoteInPartXIII |
| Tot Revenue Etc Audited Fincl Stmt | 3886344 | TotRevenueEtcAuditedFinclStmt |
| Net Unrealized Gains Investments | 39773 | NetUnrealizedGainsInvestments |
| Other Revenues | 522786 | OtherRevenues |
| Revenue Not Rptd F990 | 562559 | RevenueNotRptdF990 |
| Revenue Subtotal | 3323785 | RevenueSubtotal |
| Revenue Not Rptd On Fin Stmt | 0 | RevenueNotRptdOnFinStmt |
| Total Revenue Per Form990 | 3323785 | TotalRevenuePerForm990 |
| Tot Expenses Etc Audited Fincl Stmt | 3731482 | TotExpensesEtcAuditedFinclStmt |
| Other Expenses Included | 522786 | OtherExpensesIncluded |
| Expenses Not Rptd F990 | 522786 | ExpensesNotRptdF990 |
| Expenses Subtotal | 3208696 | ExpensesSubtotal |
| Other Expenses Not Included | 52516 | OtherExpensesNotIncluded |
| Expenses Not Rptd On Fin Stmt | 52516 | ExpensesNotRptdOnFinStmt |
| Total Expenses Per Form990 | 3261212 | TotalExpensesPerForm990 |
Form990 Schedule D Part XIII Form990ScheduleDPartXIII (4 entries)
| IdentifierIdentifier | Return ReferenceReturnReference | ExplanationExplanation |
|---|---|---|
| DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: | 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 2009, 2010 AND 2011 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 | |
| PART XII, LINE 4B - OTHER ADJUSTMENTS: | RETURNED GRANT FUNDS ADJUSTMENT |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintained |
Accts Actvs Out US Table AcctsActvsOutUSTable (2 entries)
| RegionRegion | Number Of OfficesNumberOfOffices | Number Of EmployeesNumberOfEmployees | Type Of Activities ConductedTypeOfActivitiesConducted | Specific Services ProvidedSpecificServicesProvided | Total ExpendituresTotalExpenditures |
|---|---|---|---|---|---|
| EUROPE | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | 482135 |
| EAST ASIA AND THE PACIFIC | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | 363495 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Number Of Offices | 0 | SubtotalNumberOfOffices |
| Subtotal Number Of Employees | 0 | SubtotalNumberOfEmployees |
| Cont Number Of Offices | 0 | ContNumberOfOffices |
| Cont Number Of Employees | 0 | ContNumberOfEmployees |
| Total Number Of Offices | 0 | TotalNumberOfOffices |
| Total Number Of Employees | 0 | TotalNumberOfEmployees |
| Subtotal Amount Spent | 845630 | SubtotalAmountSpent |
| Cont Amount Spent | 0 | ContAmountSpent |
| Total Amount Spent | 845630 | TotalAmountSpent |
Grants To Orgs Outside US GrantsToOrgsOutsideUS (10 entries)
| RegionRegion | Purpose Of GrantPurposeOfGrant | Amount Of Cash GrantAmountOfCashGrant | Manner Of Cash DisbursementMannerOfCashDisbursement |
|---|---|---|---|
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | 49334 | WIRE |
| EUROPE | MEDICAL RESEARCH | 32201 | WIRE |
| EUROPE | MEDICAL RESEARCH | 31646 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | 179161 | WIRE |
| EUROPE | MEDICAL RESEARCH | 84000 | WIRE |
| EUROPE | 54288 | WIRE | |
| EAST ASIA AND THE PACIFIC | 135000 | WIRE | |
| EUROPE | 100000 | WIRE | |
| EUROPE | 75000 | WIRE | |
| EUROPE | 105000 | WIRE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Number Of501c3 Orgs | 10 | TotalNumberOf501c3Orgs |
| Total Number Of Other Orgs | 0 | TotalNumberOfOtherOrgs |
| Transfer To Foreign Corp | 0 | TransferToForeignCorp |
| Interest In Foreign Trust | 0 | InterestInForeignTrust |
| Own Foreign Corp | 0 | OwnForeignCorp |
| Passive Foreign Invest Co | 0 | PassiveForeignInvestCo |
| Foreign Partnership | 0 | ForeignPartnership |
| Boycott Countries | 0 | BoycottCountries |
Schedule G IRS990ScheduleG
Events Information EventsInformation
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Event1 | FARA ENERGY BALL | NameOfEvent1 |
| Gross Receipts Event1 | 1406981 | GrossReceiptsEvent1 |
| Charitable Contributions Event1 | 898729 | CharitableContributionsEvent1 |
| Gross Revenue Event1 | 508252 | GrossRevenueEvent1 |
| Other Direct Expenses Event1 | 232836 | OtherDirectExpensesEvent1 |
| Name Of Event2 | RIDE ATAXIA PHILADELPHIA | NameOfEvent2 |
| Gross Receipts Event2 | 177083 | GrossReceiptsEvent2 |
| Charitable Contributions Event2 | 163133 | CharitableContributionsEvent2 |
| Gross Revenue Event2 | 13950 | GrossRevenueEvent2 |
| Other Direct Expenses Event2 | 20796 | OtherDirectExpensesEvent2 |
| Gross Receipts Other Events | 1380548 | GrossReceiptsOtherEvents |
| Charitable Contrib Other Events | 1252386 | CharitableContribOtherEvents |
| Gross Revenue Other Events | 128162 | GrossRevenueOtherEvents |
| Other Direct Expenses Other Events | 269154 | OtherDirectExpensesOtherEvents |
| Gross Receipts Total | 2964612 | GrossReceiptsTotal |
| Charitable Contributions Total | 2314248 | CharitableContributionsTotal |
| Gross Revenue Total Events | 650364 | GrossRevenueTotalEvents |
| Other Direct Expenses Total Events | 522786 | OtherDirectExpensesTotalEvents |
| Direct Expense Summary Events | 522786 | DirectExpenseSummaryEvents |
| Net Income Summary | 127578 | NetIncomeSummary |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Of Gaming Rec Keeper Person | FELICIA DEROSA | NameOfGamingRecKeeperPerson |
Address Of Gaming Rec Keeper US AddressOfGamingRecKeeperUS
| 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) |
|---|---|---|
| Records Maintained | 1 | RecordsMaintained |
Recipient Table RecipientTable (18 entries)
| Address Line1AddressUS/AddressLine1 | CityAddressUS/City | StateAddressUS/State | ZIP CodeAddressUS/ZIPCode | EIN Of RecipientEINOfRecipient | IRC SectionIRCSection | Amount Of Cash GrantAmountOfCashGrant | Purpose Of GrantPurposeOfGrant | Address Line2AddressUS/AddressLine2 |
|---|---|---|---|---|---|---|---|---|
| UNIVERSITY OF ROCHESTER | ||||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | 112718 | MEDICAL RESEARCH | |
| UNIVERSITY OF SOUTH FLORIDA FOUNDATION | ||||||||
| 4202 EAST FOWLER AVENUE | TAMPA | FL | 33620 | 590879015 | 501(C)(3) | 224047 | MEDICAL RESEARCH | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | ||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | 193513 | MEDICAL RESEARCH | |
| OHIO STATE UNIVERSITY | ||||||||
| 333 W 10TH AVE | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | 75000 | MEDICAL RESEARCH | |
| ARIZONA STATE UNIVERSITY | ||||||||
| UNIVERSITY DRIVE AND MILL AVENUE | TEMPE | AZ | 85287 | 860196696 | 501(C)(3) | 113250 | MEDICAL RESEARCH | TEMPE ARIZ |
| NATIONAL ATAXIA FOUNDATION | ||||||||
| 2600 FERNBROOK LANE SUITE 119 | MINNEAPOLIS | MN | 55447 | 410832903 | 501(C)(3) | 2500 | MEDICAL RESEARCH | |
| SCRIPPS RESEARCH INSTITUTE | ||||||||
| 10550 NORTH TORREY PINES ROAD | LA JOLLA | CA | 92037 | 330435954 | 501(C)(3) | 133658 | MEDICAL RESEARCH | OSP-TPC7 |
| THE JACKSON LABORATORY | ||||||||
| 600 MAIN STREET | BAR HARBOR | ME | 04609 | 010211513 | 501(C)(3) | 144265 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES | ||||||||
| 10920 WILSHIRE BLVD 5TH FLOOR | LOS ANGELES | CA | 90024 | 956006143 | 501(C)(3) | 261857 | MEDICAL RESEARCH | |
| EMORY UNIVERSITY | ||||||||
| 201 DOWMAN DRIVE | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | 17900 | MEDICAL RESEARCH | |
| STATEGICS | ||||||||
| 1455 ADAMS DR SUITE 2050 | MENLO PARK | CA | 94025 | 260305594 | 501(C)(3) | 158959 | MEDICAL RESEARCH | |
| UNIVERSITY OF CHICAGO | ||||||||
| 5801 SOUTH ELLIS AVENUE | CHICAGO | IL | 60637 | 362177139 | 501(C)(3) | 10200 | MEDICAL RESEARCH | |
| UNIVERSITY OF IOWA DEPT OF PEDIATRICS | ||||||||
| 200 HAWKINS DRIVE | IOWA CITY | IA | 52242 | 426004813 | 501(C)(3) | 9000 | MEDICAL RESEARCH | |
| THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | ||||||||
| 3451 WALNUT STREET RM P 221 | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | 22747 | MEDICAL RESEARCH | FRANKLIN BLDG |
| INDIANA UNIVERSITY | ||||||||
| 1044 WEST WALNUT | INDIANAPOLIS | IN | 46202 | 356001673 | 501(C)(3) | 38663 | MEDICAL RESEARCH | |
| REPLIGEN | ||||||||
| 41 SEYON ST | WALTHAM | MA | 02453 | 042729386 | 501(C)(3) | 196666 | MEDICAL RESEARCH | |
| UNIVERSITY OF TEXAS MD ANDERSON | ||||||||
| 1515 HOLCOMBE BLVD UNIT 1676 | HOUSTON | TX | 77030 | 746001118 | 501(C)(3) | 107283 | MEDICAL RESEARCH | |
| UNIVERSITY OF FLORIDA - DEPT OF NEUROLOGY | ||||||||
| L3-100 MCKNIGHT BRAIN INSTITUTE | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | 5300 | MEDICAL RESEARCH | NEWELL DRIVE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Nbr Of501 C3 And Govt Grants | 16 | TotalNbrOf501C3AndGovtGrants |
| Total Nbr Of Other Organizations | 18 | TotalNbrOfOtherOrganizations |
Form990 Schedule I Part IV Form990ScheduleIPartIV
| Field | Value | IRS element (for citing) |
|---|---|---|
| Identifier | PROCEDURE FOR MONITORING GRANTS IN THE U.S.: | Identifier |
| Return Reference | PART I, LINE 2: | ReturnReference |
| Explanation | SCHEDULE I, PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. | Explanation |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | X | CompensationCommittee |
| Severance Payment | 0 | SeverancePayment |
| Supplemental Nonqual Retire Plan | 0 | SupplementalNonqualRetirePlan |
| Equity Based Comp Arrangement | 0 | EquityBasedCompArrangement |
| Comp Based On Revenue Of Filing Org | 0 | CompBasedOnRevenueOfFilingOrg |
| Comp Based On Revenue Related Orgs | 0 | CompBasedOnRevenueRelatedOrgs |
| Comp Based Net Earnings Filing Org | 0 | CompBasedNetEarningsFilingOrg |
| Comp Based Net Earnings Relate Orgs | 0 | CompBasedNetEarningsRelateOrgs |
| Any Non Fixed Payments | 0 | AnyNonFixedPayments |
| Initial Contract Exception | 0 | InitialContractException |
Form990 Schedule J Part II Form990ScheduleJPartII
| Field | Value | IRS element (for citing) |
|---|---|---|
| Name Person | RONALD BARTEK | NamePerson |
| Title | PRESIDENT/DIRECTOR | Title |
| Base Compensation Filing Org | 160000 | BaseCompensationFilingOrg |
| Comp Based On Related Orgs | 0 | CompBasedOnRelatedOrgs |
| Bonus Filing Org | 0 | BonusFilingOrg |
| Bonus Related Orgs | 0 | BonusRelatedOrgs |
| Other Compensation Filing Org | 0 | OtherCompensationFilingOrg |
| Other Compensation Related Orgs | 0 | OtherCompensationRelatedOrgs |
| Deferred Comp Filing Org | 0 | DeferredCompFilingOrg |
| Deferred Comp Related Orgs | 0 | DeferredCompRelatedOrgs |
| Nontaxable Benefits Filing Org | 0 | NontaxableBenefitsFilingOrg |
| Nontaxable Benefits Related Orgs | 0 | NontaxableBenefitsRelatedOrgs |
| Total Compensation Filing Org | 160000 | TotalCompensationFilingOrg |
| Total Compensation Related Orgs | 0 | TotalCompensationRelatedOrgs |
| Comp Report Prior990 Filing Org | 0 | CompReportPrior990FilingOrg |
| Comp Report Prior990 Related Orgs | 0 | CompReportPrior990RelatedOrgs |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTraded
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | X | NonCashCheckbox |
| Number Of Contributions | 3 | NumberOfContributions |
| Noncash Contribs Rptd F990 | 55849 | NoncashContribsRptdF990 |
| Method Of Determining Revenues | MARKET PRICE | MethodOfDeterminingRevenues |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeld |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGifts |
| Third Parties Used | 0 | ThirdPartiesUsed |
Schedule O IRS990ScheduleO
General Explanation GeneralExplanation (8 entries)
| Return ReferenceReturnReference | ExplanationExplanation | IdentifierIdentifier |
|---|---|---|
| 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 XI, LINE 9: | RETURNED GRANT FUNDS 52,516. | CHANGES IN NET ASSETS OR FUND BALANCES: |
| 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. |