FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2020
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2020-01-01 to 2020-12-31
- Filed
- 2021-05-13
- IRS object ID
- 202141339349302974
- Schema version
- 2020v4.1
- 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 L
- Schedule M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2021-05-13T11:57:42-05:00 | ReturnTs |
| Tax Period End | 2020-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 231518888 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MAILLIE LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 600 WILLOWBROOK LANE SUITE 624 | AddressLine1Txt |
| City | WEST CHESTER | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19382 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2020-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 522122720 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FRIEDREICH'S ATAXIA RESEARCH ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FRIE | BusinessNameControlTxt |
| Phone | 4848796160 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 1537 | AddressLine1Txt |
| City | SPRINGFIELD | CityNm |
| State Abbreviation | VA | StateAbbreviationCd |
| ZIP | 22151 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JENNIFER FARMER | PersonNm |
| Person Title | CHIEF EXECUTIVE OFFICER | PersonTitleTxt |
| Phone | 4848796160 | PhoneNum |
| Signature | 2021-05-13 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Signing Officer SigningOfficerGrp
Person Full Name PersonFullName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person First | JENNIFER | PersonFirstNm |
| Person Last | FARMER | PersonLastNm |
| Field | Value | IRS element (for citing) |
|---|---|---|
| SSN | 999009999 | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | EDWARD FRONCZKOWSKI CPA | PreparerPersonNm |
| PTIN | P01259092 | PTIN |
| Phone | 6106964353 | PhoneNum |
Additional Filer Information AdditionalFilerInformation
Trusted Customer TrustedCustomerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Trusted Customer | 2 | TrustedCustomerCd |
| Authentication Assurance Level | AAL1 | AuthenticationAssuranceLevelCd |
| Identity Assurance Level | IAL1 | IdentityAssuranceLevelCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2020 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | JENNIFER FARMER | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1Txt |
| City | DOWNINGTOWN | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19335 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $13,514,116 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CUREFA.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1998 | FormationYr |
| Legal Domicile State | VA | LegalDomicileStateCd |
| Activity Or Mission | TO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. | ActivityOrMissionDesc |
| Voting Members Governing Body | 17 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 15 | VotingMembersIndependentCnt |
| Total Employee | 14 | TotalEmployeeCnt |
| Total Volunteers | 500 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $7,146,157 | PYContributionsGrantsAmt |
| CY Contributions Grants | $12,628,384 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $47,588 | PYInvestmentIncomeAmt |
| CY Investment Income | $108,792 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$116,156 | PYOtherRevenueAmt |
| CY Other Revenue | -$193,341 | CYOtherRevenueAmt |
| PY Total Revenue | $7,077,589 | PYTotalRevenueAmt |
| CY Total Revenue | $12,543,835 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $6,011,313 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $6,348,843 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $724,265 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $995,045 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $153,493 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $746,853 | PYOtherExpensesAmt |
| CY Other Expenses | $394,814 | CYOtherExpensesAmt |
| PY Total Expenses | $7,482,431 | PYTotalExpensesAmt |
| CY Total Expenses | $7,738,702 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$404,842 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $4,805,133 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $4,187,243 | TotalAssetsBOYAmt |
| Total Assets EOY | $9,314,067 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $394,326 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $608,696 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $3,792,917 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $8,705,371 | 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 | $6,001,974 | ExpenseAmt |
| Grant | $5,564,902 | GrantAmt |
| Desc | RESEARCH AND GRANT PROGRAMFARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2020, FARA AWARDED OVER $6 MILLION IN RESEARCH FUNDING. THIS INCLUDED MORE THAN 34 ACTIVE RESEARCH PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AS WELL AS SUPPORT FOR INSTITUTIONAL BASED RESEARCH AND FARA DIRECTED PROJECTS. EIGHTEEN NEW GRANTS WERE FUNDED AFTER PEER REVIEW THROUGH OUR INVESTIGATOR-INITIATED GRANT PROGRAM AND SEVEN APPROVED IN PREVIOUS YEARS RECEIVED CONTINUED FUNDING. THIRTEEN OF THE EIGHTEEN NEW GRANTS FUNDED WERE TO INVESTIGATORS WHO HAVE NEVER RECEIVED A FARA GRANT, INCLUDING 3 JUNIOR INVESTIGATORS, THEREBY EXPANDING THE COMMUNITY'S RESEARCH EXPERTISE. CURRENTLY, RESEARCHERS IN 10 COUNTRIES ARE RECEIVING FUNDING FROM THE FARA RESEARCH GRANT PROGRAM. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH OUR FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT.FARA HAS IDENTIFIED OPPORTUNITIES TO FUND RESEARCH AT INSTITUTIONS WHERE THERE ARE MULTIPLE INVESTIGATORS WITH AN EXPERTISE AND COMMITMENT TO FA RESEARCH AND/OR OPPORTUNITY TO LEVERAGE TECHNOLOGIES, INNOVATION OR NEW GROWTH TO THE FA COMMUNITY. BY ESTABLISHING THESE INSTITUTIONAL FUNDING PROGRAMS WE ARE ABLE TO PROMOTE COLLABORATION AND SYNERGY ACROSS BASIC, TRANSLATIONAL AND CLINICAL RESEARCH, PROVIDE A LONGER TERM COMMITMENT FOR RESEARCH, ATTRACT NEW INVESTIGATORS, AND LEVERAGE THE INSTITUTIONS RESOURCES AND ENGAGEMENT. FARA PROVIDES INSTITUTIONAL BASED RESEARCH SUPPORT FOR THE FA CENTER OF EXCELLENCE AT PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA AND THIS YEAR ESTABLISHED THE FA ACCELERATOR PROGRAM AT THE BROAD INSTITUTE. FARA DIRECTED PROJECTS ARE RESEARCH INITIATIVES IDENTIFIED AND LEAD BY FARA'S SCIENTIFIC ADVISORY BOARD AND STAFF. ALL OF THESE RESEARCH PROJECTS ARE HIGH PRIORITY AS THEY AIM TO PROVIDE RESEARCH RESOURCES, ADDRESS SPECIFIC GAPS IN KNOWLEDGE OR DEEPEN OUR UNDERSTANDING OF DISEASE MECHANISM, PATHOLOGY, AND PROGRESSION AND DISCOVERY OF INNOVATIVE APPROACHES TO THERAPY. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PATHE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT TO PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA, PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES. FARA HAS MAINTAINED THIS FUNDING PARTNERSHIP WITH THE CUREFA FOUNDATION (ESTABLISHED BY THE HAMILTON AND FINNERAN FAMILIES) TO ADVANCE RESEARCH THROUGH THE COE. PROJECTS AND INVESTIGATORS WITH CONTINUED FUNDING INCLUDED DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY AS WELL AS THE ADDITION OF DR. JENNIFER PHILLIPS CREMINS- GENETIC MODELING IN 2020.THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. IN ITS FIRST SEVEN YEARS, THE COE REACHED SEVERAL SIGNIFICANT RESEARCH MILESTONES WITH THE DISCOVERY OF POSSIBLE TREATMENT CANDIDATES, THE STUDY OF NEW BIOMARKERS TO MEASURE THE DISEASE, AND LAUNCH OF PROMISING NEUROLOGIC AND CARDIAC CLINICAL TRIALS AND STUDIES. FUNDING PROVIDED TO THE COE ENABLED EARLY RESEARCH FINDINGS WHICH HAS ALLOWED INVESTIGATORS TO APPLY FOR AND RECEIVE LARGER GRANTS FROM THE NATIONAL INSTITUTES OF HEALTH TO CONTINUE TO EXPAND THIS IMPORTANT WORK. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARDTHE FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARD WAS ESTABLISHED IN AUGUST 2020. FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA, THE ACCELERATOR IS CURRENTLY SUPPORTING THE WORK OF THREE WORLD CLASS SCIENTISTS AS THEY APPLY THEIR EXPERTISE TO THE DISCOVERY OF NEW APPROACHES THAT COULD LEAD TO TREATMENTS FOR FA. THE LEADER OF THE ACCELERATOR, VAMSI MOOTHA, A HOWARD HUGHES MEDICAL INSTITUTE INVESTIGATOR, AND HIS COLLABORATORS PREVIOUSLY DISCOVERED THAT LIMITED OXYGEN IN CELLS, OR HYPOXIA, REJUVENATES CELLS THAT LACK FRATAXIN. THE TWO OTHER FOUNDING INVESTIGATORS INCLUDE GARY RUVKUN, A PROFESSOR OF GENETICS AT HARVARD MEDICAL SCHOOL AND MASSACHUSETTS GENERAL HOSPITAL, WHO IS USING SIMPLE MODEL SYSTEM TO TEST DIFFERENT MOLECULES FOR THEIR ABILITY TO RESCUE FRATAXIN-DEFICIENT CELLS. DAVID LIU, WHO IS ALSO A HOWARD HUGHES MEDICAL INSTITUTE INVESTIGATOR, IS APPLYING NEW GENE EDITING TECHNOLOGIES TO DIRECTLY CORRECT THE GENETIC CAUSES OF FRIEDREICH'S ATAXIA. FARA DIRECTED RESEARCHIN 2020 FARA HAS SUPPORTED NEW DIRECTED RESEARCH PROGRAMS, HANDING OVER SPECIFIC UNANSWERED QUESTIONS TO EXPERTS AND ASSISTING THEM WITH THE METHODS NEEDED TO ANSWER THESE QUESTIONS. SEVERAL KEY INITIATIVES INCLUDE: 1. ESTABLISHED A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://SITES.UAB.EDU/THENAPIERALALAB/FRDA-CELL-LINE-REPOSITORY/ 2. PUBLISHED THE CNS WHITE PAPER, TO PROVIDE BETTER UNDERSTANDING OF THE AFFECTED AREAS IN THE NERVOUS SYSTEM AND OF THE COURSE OF NEUROPATHOLOGICAL CHANGES OVER TIME. THE PAPER IS OPEN ACCESS AT: HTTPS://DOI.ORG/10.1089/HUM.2020.264 3. LAUNCHED TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM INITIATED IN 2020, A NATURAL HISTORY STUDY TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. PARTICIPATING CLINICAL SITES ARE IN USA, BRAZIL, AND GERMANY. 4. INITIATED A COLLABORATIVE EFFORT BETWEEN UNIVERSITY OF OKLAHOMA, UNIVERSITY OF ALABAMA, AND UNIVERSITY OF PENNSYLVANIA TO STUDY THE PRECISE MECHANISM OF THIS GENE SILENCING IN DIFFERENT TISSUES AND MODELS OVER TIME. 5. ASSEMBLED GLOBAL CLINICAL EXPERTS TO LEAD A RE-EVALUATION AND UPDATE TO THE CLINICAL MANAGEMENT GUIDELINES IN FA, NEW GUIDELINES ARE EXPECTED TO BE PUBLISHED IN 2021.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 COMPLETE LIST OF 2020 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT-AWARDSA COMPLETE LIST OF 2020 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/SCIENTIFIC-NEWS/FUNDED-RESEARCH | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $972,862 | ExpenseAmt |
| Grant | $783,942 | GrantAmt |
| Desc | CLINICAL RESEARCH INFRASTRUCTUREIN ADDITION TO RESEARCH GRANTS, FARA FUNDS THE ONGOING DEVELOPMENT OF DOMAIN RESOURCES IN THE FORM OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES CAN INCLUDE THINGS LIKE: FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY: THE FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY (FAGPR) IS THE ONLY WORLDWIDE REGISTRY OF FRIEDREICH'S ATAXIA PATIENTS. THE GOALS OF THE FAGPR ARE TO COLLECT INFORMATION ON ALL FA PATIENTS IN ONE REGISTRY, TO DEVELOP THE REGISTRY INTO A POWERFUL RESOURCE FOR RESEARCH, AND TO ENGAGE THE FA COMMUNITY IN STUDIES AIMED AT ADVANCING OUR KNOWLEDGE OF FA AND THE TREATMENTS BEING DEVELOPED. FARA PARTNERS WITH INTERNATIONAL PATIENT ADVOCACY ORGANIZATIONS THROUGH A GOVERNANCE BOARD TO ENSURE MULTI-STAKEHOLDER ENGAGEMENT AND OVERSIGHT OF THE FAGPR. IN 2020, ABOUT 1000 INDIVIDUALS WITH FA PROVIDED UPDATED INFORMED CONSENT AND CLINICAL DATA AND THE FAGPR WAS USED TO RECRUIT FOR TWO CLINICAL TRIALS AND SEVERAL OTHER CLINICAL RESEARCH STUDIES. TO LEARN MORE, VISIT CUREFA.ORG/REGISTRY. COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): THE CCRN IS AN INTERNATIONAL NETWORK OF 13 CLINICAL RESEARCH CENTERS THAT WORK TOGETHER TO ADVANCE TREATMENTS AND CLINICAL CARE FOR INDIVIDUALS WITH FRIEDREICH'S ATAXIA. HAVING SUCH A NETWORK MEANS THAT THERE ARE TRAINED PHYSICIANS AND RESEARCH COORDINATORS READY TO DO CLINICAL RESEARCH STUDIES AND TRIALS. ALSO, THIS NETWORK IS BACKED BY A DATA COORDINATION CENTER THAT FACILITATES ALL ASPECTS OF DATA COLLECTION, DATABASE MANAGEMENT, AND STATISTICAL ANALYSIS OF STUDY DATA. TO LEARN MORE AND REVIEW A LIST OF RESEARCH PUBLICATIONS, VISIT CUREFA.ORG/NETWORK.HTMLNATURAL 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 NATURAL HISTORY DATA (ONGOING) IN MORE THAN 1,100 INDIVIDUALS WITH FA, VALIDATED CLINICAL OUTCOME MEASURES AND THE FARS SCALE, STUDIED SPEECH, VISION AND HEARING, LAUNCHED BIOMARKER STUDIES, ESTABLISHED DNA AND RNA REPOSITORIES, AND PROVIDED MANY BLOOD SAMPLES TO RESEARCHERS AROUND THE WORLD. THE CCRN IN FA INVESTIGATORS HAVE BEEN INVOLVED IN MULTIPLE CLINICAL TRIALS INCLUDING A FEW THAT WERE DESIGNED AND CONDUCTED SOLELY THROUGH NETWORK SITES. CRITICAL PATH INSTITUTE DATA COLLABORATION PROJECTIN 2017, FARA INITIATED A PROJECT WITH CRITICAL PATH INSTITUTE'S (C-PATH) DATA COLLABORATION CENTER (DCC) TO DEVELOP AN AGGREGATED DATABASE OF CLINICAL DATA FOR FA. USE OF THIS DATABASE WILL PROMOTE COLLABORATIVE RESEARCH TO SUPPORT THE UNDERSTANDING OF NATURAL HISTORY, POTENTIAL BIOMARKERS, AND POTENTIAL CLINICAL ENDPOINTS FOR PATIENTS WITH FA, WHICH WILL HELP RESEARCHERS DEVELOP MORE EFFICIENT CLINICAL TRIAL PROTOCOLS TO TEST NEW THERAPIES MORE QUICKLY AND EFFECTIVELY. SIX DE-IDENTIFIED DATASETS FROM PREVIOUS CLINICAL TRIALS AND FA-CLINICAL OUTCOME MEASURE DATASETS HAVE BEEN AGGREGATED INTO A SINGLE DATABASE (FA-ICD) IN A SCIENTIFICALLY RIGOROUS MANNER BY C-PATH'S DCC. AS OF DECEMBER 31, 2020 THIS DATA WAS SHARED WITH >18 RESEARCH ORGANIZATIONS (ACADEMIC AND INDUSTRY) TO FURTHER UNDERSTAND THE CLINICAL PHENOTYPE, NATURAL HISTORY, OUTCOME MEASURES AND TO ASSIST IN DESIGNING CLINICAL TRIALS. ALSO IN 2020, THE FA-ICD BECAME PART OF THE RARE DISEASE CURES ACCELERATOR - DATA AND ANALYTICS PLATFORM (COLLABORATIVE PLATFORM ESTABLISHED BY C-PATH, NORD AND FDA) WHERE THERE IS BETTER SEARCH AND ANALYTIC FUNCTIONS AND THE ABILITY TO LOOK AT FA DATA SET IN COMBINATION WITH DATA FROM OTHER DISEASES.ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2020 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG/FINANCIALS | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $282,959 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Desc | EDUCATION, AWARENESS & OUTREACH PROGRAMSFRIEDREICH ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO ADVOCACY AND RAISING AWARENESS FOR FA. FARA HAS UTILIZED BOTH TRADITIONAL AND SOCIAL MEDIA STRATEGIES TO BRING GREATER AWARENESS TO FA IN THE GENERAL PUBLIC AND TO ENGAGE AND EDUCATE THE FA COMMUNITY. FOR EXAMPLE, FARA CONDUCTED A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGED COMMUNITY PARTICIPATION LEADING UP TO RARE DISEASE DAY AND FA AWARENESS DAY. THE FARA AMBASSADOR PROGRAM WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2020. THE PROGRAM NOW INCLUDES 87 PARTICIPANTS. THE MISSION OF THE FARA AMBASSADORS IS TO BE POSITIVE, SUPPORTIVE, PEER REPRESENTATIVES FOR THE FA COMMUNITY; ACTIVELY RAISING AWARENESS AND FUNDS FOR FARA. THE FARA AMBASSADOR PROGRAM MEMBERS ORGANIZE SERVICE PROJECT TEAMS INCLUDING:1. A BLOG TEAM THAT FACILITATES WEEKLY MEET THE COMMUNITY INTERVIEWS WITH PEOPLE LIVING WITH FA AND A MONTHLY MEET THE RESEARCHER INTERVIEW. 2. A CARD WRITING TEAM THAT WRITES PERSONALIZED CARDS TO SEND TO THE VARIOUS STAKEHOLDERS AND COMMUNITY MEMBERS THROUGHOUT THE YEAR TO SAY THANK YOU OR TO OFFER ENCOURAGEMENT. 3. A MONTHLY PEER ZOOM HANGOUT GROUPS FOR THE GREATER FA COMMUNITY TO ATTEND AND CONNECT WITH ONE ANOTHER ONLINE (ONE IS GEARED TO ADULTS, AND ONE IS FOR TEENS WITH FA). 4. A SOCIAL MEDIA TEAM THAT GENERATES ENGAGING CONTENT IN SUPPORT OF FARA INITIATIVES AND CAMPAIGNS. 5. A SPEAKING TEAM WHERE PARTICIPANTS PRACTICE TELLING THEIR STORY LIVING WITH FA ON BEHALF OF THE ORGANIZATION.AMBASSADORS AND OTHER PATIENT ADVOCATES WERE INVOLVED WITH FA PANEL PRESENTATIONS AT PHARMACEUTICAL COMPANIES WITH ACTIVE FA DRUG OR GENE THERAPY DEVELOPMENT PIPELINES. EACH PANEL IS COMPRISED OF PATIENTS AT VARIOUS AGES AND STAGES OF PROGRESSION FOR A COMPREHENSIVE PICTURE OF LIFE WITH FA. AMBASSADORS AND OTHER COMMUNITY REPRESENTATIVES CONNECTED WITH MANY OF FARA'S ACADEMIC AND INDUSTRY PARTNERS BY SERVING ON PATIENT PANELS AT FIVE PHARMA COMPANIES PURSUING THERAPY FOR FA AND TWO GENETIC COUNSELING PROGRAMS. FOR MORE INFORMATION VISIT CUREFA.ORG/AMBASSADORS FARA FACILITATED FORMAL TRAINING FOR THE AMBASSADOR LEADERSHIP TEAM AND AMBASSADORS. THE FOCUS FOR THE TRAINING WAS UNDERSTANDING THE DRUG DEVELOPMENT AND REGULATORY PROCESS. FARA ALSO HELPED TRAIN INTERESTED COMMUNITY MEMBERS BY PROVIDING A VIRTUAL PROGRAM ENTITLED "ENGAGING PATIENTS IN CLINICAL TRIAL DESIGN." LASTLY, FARA HOSTED A WEEKLY EDUCATIONAL WEBINAR SERIES IN MAY FOR FA COMMUNITY MEMBERS. THIS SERIES INCLUDED FLASH TALKS WHERE YOUNG INVESTIGATORS SHARED THEIR RESEARCH IN A SERIES OF 5 MINUTE TALKS ON TOPICS RANGING FROM UNDERSTANDING THE UNDERLYING MECHANISM OF DISEASE TO THERAPEUTIC APPROACHES TO CLINICAL OUTCOME MEASURES. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $126,532 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Desc | WORKSHOPS, SYMPOSIA, & CONFERENCESFARA ORGANIZES AND SUPPORTS CONFERENCES TO IMPROVE SHARING OF KNOWLEDGE, INSIGHTS AND ADVANCES AND BUILD COLLABORATIONS AND SYNERGISTIC CONNECTIONS BETWEEN FA RESEARCHERS, INDUSTRY AND GOVERNMENT PARTNERS AND PATIENTS. THIS YEAR FARA HOSTED A VIRTUAL TWO-DAY BIOMARKER MEETING WITH 285 ATTENDEES TO REVIEW THE STATE OF BIOMARKER AND NOVEL ENDPOINT DEVELOPMENT FOR FRIEDREICH'S ATAXIA. (IE MORE EFFICIENT METHODS TO MEASURE DISEASE CHANGE). THE FOCUS WAS ON PHARMACODYNAMIC AND MONITORING BIOMARKERS BOTH FOR TRANSLATIONAL AND CLINICAL APPLICATIONS, AS WELL AS CLINICAL OUTCOME ASSESSMENTS. FARA'S GOAL IS TO HAVE A TOOLBOX OF BIOMARKERS AND OUTCOME ASSESSMENTS THAT CAN BE USED IN VARIOUS SETTINGS AND FOR DIVERSE TREATMENT APPROACHES.SYMPOSIUMSFARA HOSTED AN IN-PERSON SINGLE-DAY EDUCATIONAL SYMPOSIUM FOR 165 PATIENTS AND CAREGIVERS IN IRVINE, CALIFORNIA (FEBRUARY 21) AS WELL AS AN 8-PART VIRTUAL SYMPOSIUM SERIES THROUGHOUT THE MONTH OF OCTOBER. THE OCTOBER SERIES, PROVIDED VIA WEBINAR THROUGH A CONFERENCE APP, WELCOMED 400 ATTENDEES REGISTERED FROM OVER 20 COUNTRIES. THESE SYMPOSIUMS PROVIDE AN OPPORTUNITY TO EDUCATE THE PATIENT/FAMILY COMMUNITY ON RESEARCH ADVANCES, PROGRESS ON CLINICAL TRIALS AND ARE A UNIQUE FORUM FOR PATIENTS AND RESEARCHERS TO ENGAGE AND LEARN FROM EACH OTHER'S EXPERIENCES AND PERSPECTIVES. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $126,532 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $0 | TotalOtherProgSrvcGrantAmt |
| Total Program Service Expenses | $7,384,327 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | 0 | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | 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 | Yes (1) | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | Yes (1) | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | Yes (1) | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 1 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 14 | 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 |
| Form8282 Filed | 0 | Form8282FiledCnt |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 17 | 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 | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 4848796160 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1Txt |
| City | DOWNINGTOWN | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19335 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (18 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | OfficerOfficerInd |
|---|---|---|---|---|---|---|
| EDWARD RAMSEY | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| MARILYN E DOWNING | ||||||
| SECRETARY/ DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| RUTH ACTON | ||||||
| TREASURER/ DIRECTOR | 25.00 | Yes (X) | $42,000 | $0 | $11,002 | Yes (X) |
| JENNIFER GOOD | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| PAUL AVERY | ||||||
| CHAIRMAN/ DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| DR HOLLY HEDRICK | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR KATHY MATHEWS | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR STEVE KLASKO | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| THOMAS HAMILTON | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR SANJAY BIDICHANDANI | ||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DEREK G HENNECKE | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR JAMES MCARTHUR | ||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| TONY PLOHOROS | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| PATRICK RITSCHEL | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| RONALD BARTEK | ||||||
| PRESIDENT/DIRECTOR | 40.00 | Yes (X) | $110,000 | $0 | $3,349 | Yes (X) |
| BRIGID BRENNAN | ||||||
| DIRECTOR/ IN-HOUSE COUNSEL | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR JAMES R RUSCHE | ||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| JENNIFER FARMER | ||||||
| CHIEF EXECUTIVE OFFICER | 40.00 | $150,000 | $0 | $4,598 | Yes (X) | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $302,000 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $18,949 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 2 | 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 |
| Federated Campaigns | $7,978 | FederatedCampaignsAmt |
| Fundraising | $2,828,312 | FundraisingAmt |
| Government Grants | $174,600 | GovernmentGrantsAmt |
| All Other Contributions | $9,617,494 | AllOtherContributionsAmt |
| Total Contributions | $12,628,384 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $38,997 | TotalRevenueColumnAmt |
| Exclusion | $38,997 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $496,643 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $426,848 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $69,795 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $69,795 | TotalRevenueColumnAmt |
| Exclusion | $69,795 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $350,092 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $2,828,312 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $543,433 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$193,341 | TotalRevenueColumnAmt |
| Exclusion | -$193,341 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $12,543,835 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | -$84,549 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,877,740 | TotalAmt |
| Program Services | $4,877,740 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,471,103 | TotalAmt |
| Program Services | $1,471,103 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $345,865 | TotalAmt |
| Program Services | $228,342 | ProgramServicesAmt |
| Management And General | $67,992 | ManagementAndGeneralAmt |
| Fundraising | $49,531 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $649,180 | TotalAmt |
| Program Services | $538,697 | ProgramServicesAmt |
| Management And General | $60,940 | ManagementAndGeneralAmt |
| Fundraising | $49,543 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $17,900 | TotalAmt |
| Management And General | $17,900 | ManagementAndGeneralAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $16,298 | TotalAmt |
| Management And General | $16,298 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $124,033 | TotalAmt |
| Program Services | $111,089 | ProgramServicesAmt |
| Management And General | $5,403 | ManagementAndGeneralAmt |
| Fundraising | $7,541 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $50 | TotalAmt |
| Fundraising | $50 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $22,670 | TotalAmt |
| Program Services | $5,953 | ProgramServicesAmt |
| Management And General | $6,829 | ManagementAndGeneralAmt |
| Fundraising | $9,888 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $44,299 | TotalAmt |
| Program Services | $25,314 | ProgramServicesAmt |
| Management And General | $6,328 | ManagementAndGeneralAmt |
| Fundraising | $12,657 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $37,850 | TotalAmt |
| Program Services | $35,198 | ProgramServicesAmt |
| Management And General | $2,014 | ManagementAndGeneralAmt |
| Fundraising | $638 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $120 | TotalAmt |
| Management And General | $120 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $9,416 | TotalAmt |
| Management And General | $5,013 | ManagementAndGeneralAmt |
| Fundraising | $4,403 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| SUBSCRIPTIONS & LICENSI | $98,789 | $86,932 | $5,118 | $6,739 |
| CREDIT CARD & BANK FEES | $7,785 | $20 | $46 | $7,719 |
| FACILITIES & EQUIPMENT | $5,651 | $0 | $5,651 | $0 |
| BUSINESS REGISTRATION F | $5,285 | $501 | $4,784 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $4,668 | TotalAmt |
| Program Services | $3,939 | ProgramServicesAmt |
| Management And General | $729 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,738,702 | TotalAmt |
| Program Services | $7,384,327 | ProgramServicesAmt |
| Management And General | $200,882 | ManagementAndGeneralAmt |
| Fundraising | $153,493 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,821,067 | BOYAmt |
| EOY | $3,850,878 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $191,637 | BOYAmt |
| EOY | $277,880 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $35,477 | BOYAmt |
| EOY | $42,086 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $7,135 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $7,135 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $120 | BOYAmt |
| EOY | $0 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,128,027 | BOYAmt |
| EOY | $5,137,765 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,915 | BOYAmt |
| EOY | $5,458 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,187,243 | BOYAmt |
| EOY | $9,314,067 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $385,252 | BOYAmt |
| EOY | $508,696 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,074 | BOYAmt |
| EOY | $100,000 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $394,326 | BOYAmt |
| EOY | $608,696 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,668,941 | BOYAmt |
| EOY | $4,124,902 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $123,976 | BOYAmt |
| EOY | $4,580,469 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,792,917 | BOYAmt |
| EOY | $8,705,371 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,187,243 | BOYAmt |
| EOY | $9,314,067 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Info In Schedule O Part XI | Yes (X) | InfoInScheduleOPartXIInd |
| Reconcilation Revenue Expnss | $4,805,133 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $112,779 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | -$5,458 | 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 | $5,388,847 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,518,776 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $7,662,625 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,146,206 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $12,628,384 | CurrentTaxYearAmt |
| Total | $40,344,838 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $5,388,847 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $7,518,776 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $7,662,625 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $7,146,206 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $12,628,384 | CurrentTaxYearAmt |
| Total | $40,344,838 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $11,236,816 | SubstantialContributorsTotAmt |
| Public Support Total170 | $29,108,022 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $29,213 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $37,283 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $42,296 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $45,345 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $38,997 | CurrentTaxYearAmt |
| Total | $193,134 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $40,537,972 | TotalSupportAmt |
| Public Support CY170 | 0.71800 | PublicSupportCY170Pct |
| Public Support PY170 | 0.83270 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,966 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,031 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $9,997 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $8,272,138 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $8,282,135 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $564,107 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $141,027 | FilingOrganizationsTotalAmt |
Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $0 | FilingOrganizationsTotalAmt |
Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $531,374 | CurrentYearMinus3Amt |
| Current Year Minus2 | $481,734 | CurrentYearMinus2Amt |
| Current Year Minus1 | $567,238 | CurrentYearMinus1Amt |
| Current Year | $564,107 | CurrentYearAmt |
| Total | $2,144,453 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $3,216,680 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $6,500 | CurrentYearMinus3Amt |
| Current Year Minus2 | $8,925 | CurrentYearMinus2Amt |
| Current Year Minus1 | $12,259 | CurrentYearMinus1Amt |
| Current Year | $9,997 | CurrentYearAmt |
| Total | $37,681 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $132,844 | CurrentYearMinus3Amt |
| Current Year Minus2 | $120,434 | CurrentYearMinus2Amt |
| Current Year Minus1 | $141,810 | CurrentYearMinus1Amt |
| Current Year | $141,027 | CurrentYearAmt |
| Total | $536,115 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $804,173 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $3,879 | CurrentYearMinus3Amt |
| Current Year Minus2 | $5,326 | CurrentYearMinus2Amt |
| Current Year Minus1 | $7,316 | CurrentYearMinus1Amt |
| Current Year | $5,966 | CurrentYearAmt |
| Total | $22,487 | TotalAmt |
Schedule D IRS990ScheduleD
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $7,135 | OtherCostOrOtherBasisAmt |
| Depreciation | $7,135 | DepreciationAmt |
| Book Value | $0 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $0 | TotalBookValueLandBuildingsAmt |
| Total Rev Etc Audited Fincl Stmt | $13,279,749 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $112,779 | NetUnrealizedGainsInvstAmt |
| Donated Services And Use Fclts | $96,000 | DonatedServicesAndUseFcltsAmt |
| Other Revenue | $543,433 | OtherRevenueAmt |
| Revenue Not Reported | $752,212 | RevenueNotReportedAmt |
| Revenue Subtotal | $12,527,537 | RevenueSubtotalAmt |
| Other Revenues Not Included | $16,298 | OtherRevenuesNotIncludedAmt |
| Revenue Not Reported Fincl Stmt | $16,298 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $12,543,835 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $8,367,295 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $96,000 | DonatedServicesUseFcltsAmt |
| Losses Reported | $5,458 | LossesReportedAmt |
| Other Expenses Included | $543,433 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $644,891 | ExpensesNotReportedAmt |
| Expenses Subtotal | $7,722,404 | ExpensesSubtotalAmt |
| Other Expenses Not Included | $16,298 | OtherExpensesNotIncludedAmt |
| Expenses Not Rpt Fincl Stmt | $16,298 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $7,738,702 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE |
| PART XI, LINE 4B - OTHER ADJUSTMENTS: | INVESTMENT MANAGEMENT FEES |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE |
| PART XII, LINE 4B - OTHER ADJUSTMENTS: | INVESTMENT MANAGEMENT FEES |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| EUROPE | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $664,702 |
| EAST ASIA AND THE PACIFIC | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $627,781 |
| SOUTH AMERICA | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $173,370 |
| CANADA | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $5,250 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $1,471,103 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $1,471,103 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (18 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $150,002 | WIRE |
| EUROPE | MEDICAL RESEARCH | $87,510 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $96,401 | WIRE |
| EUROPE | MEDICAL RESEARCH | $96,547 | WIRE |
| SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, | MEDICAL RESEARCH | $67,500 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $100,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $150,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $170,198 | WIRE |
| EUROPE | MEDICAL RESEARCH | $75,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $176,116 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $53,480 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $7,700 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $50,000 | WIRE |
| EUROPE | MEDICAL RESEARCH | $24,529 | WIRE |
| SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, | MEDICAL RESEARCH | $105,870 | WIRE |
| EUROPE | MEDICAL RESEARCH | $20,000 | WIRE |
| NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) | MEDICAL RESEARCH | $5,250 | WIRE |
| EUROPE | MEDICAL RESEARCH | $35,000 | WIRE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 16 | Total501c3OrgCnt |
| Total Other Org | 2 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 2: | GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS. |
| PART III ACCOUNTING METHOD: |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | FARA ENERGY BALL | Event1Nm |
| Gross Receipts Event1 | $1,193,685 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $963,566 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $230,119 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $155,529 | OtherDirectExpensesEvent1Amt |
| Event2 | RIDE ATAXIA PHILADELPHIA | Event2Nm |
| Gross Receipts Event2 | $513,211 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $513,211 | CharitableContriEvent2Amt |
| Other Direct Expenses Event2 | $56,413 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 14 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,471,508 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,351,535 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $119,973 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $331,491 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $3,178,404 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $2,828,312 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $350,092 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $543,433 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $543,433 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$193,341 | NetIncomeSummaryAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Individual With Books | FELICIA DEROSA | IndividualWithBooksNm |
Persons With Books US Address PersonsWithBooksUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 533 W UWCHLAN AVENUE | AddressLine1Txt |
| City | DOWNINGTOWN | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19335 | ZIPCd |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (20 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|
| ALBANY RESEARCH INSTITUTE | |||||||
| 113 HOLLAND AVE | ALBANY | NY | 12208 | 141716021 | 501(C)(3) | $84,250 | MEDICAL RESEARCH |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | |||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $874,190 | MEDICAL RESEARCH |
| CRITICAL PATH INSTITUTE | |||||||
| 1730 E RIVER RD 200 | TUSCON | AZ | 85718 | 201991334 | 501(C)(3) | $76,625 | MEDICAL RESEARCH |
| EMORY UNIVERSITY | |||||||
| 201 DOWMAN DR | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | $7,600 | MEDICAL RESEARCH |
| NYU SCHOOL OF MEDICINE | |||||||
| 550 1ST AVENUE | NEW YORK | NY | 10016 | 135562309 | 501(C)(3) | $75,000 | MEDICAL RESEARCH |
| OHIO STATE UNIVERSITY | |||||||
| 333 W 10TH AVE | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | $6,500 | MEDICAL RESEARCH |
| STANFORD UNIVERSITY | |||||||
| 2770 SAND HILL ROAD | MENLO PARK | CA | 94025 | 941156365 | 501(C)(3) | $150,000 | MEDICAL RESEARCH |
| THE BROAD INSTITUTE | |||||||
| 415 MAIN STREET | CAMBRIDGE | MA | 02142 | 263428781 | 501(C)(3) | $1,641,000 | MEDICAL RESEARCH |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES | |||||||
| 10920 WILSHIRE BLVD 5TH FLOOR | LOS ANGELES | CA | 90024 | 956006143 | 501(C)(3) | $53,100 | MEDICAL RESEARCH |
| THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER | |||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75390 | 756002868 | 501(C)(3) | $85,736 | MEDICAL RESEARCH |
| TRUSTREES OF THE UNIVERSITY OF PENNSYLVANIA | |||||||
| 3451 WALNUT ST RM 310 | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | $212,551 | MEDICAL RESEARCH |
| UNIVERSITY OF ALABAMA - BIRMINGHAM | |||||||
| 1720 2ND AVE S | BIRMINGHAM | AL | 35294 | 636005396 | 501(C)(3) | $531,310 | MEDICAL RESEARCH |
| UNIVERSITY OF CALIFORNIA DAVIS | |||||||
| 1850 RESEARCH PARK DRIVE | DAVIS | CA | 95618 | 946036494 | 501(C)(3) | $75,000 | MEDICAL RESEARCH |
| UNIVERSITY OF COLORADO | |||||||
| 1800 GRANT STREET | DENVER | CO | 80203 | 846000555 | 501(C)(3) | $8,300 | MEDICAL RESEARCH |
| UNIVERSITY OF FLORIDA | |||||||
| DEPT OF NEUROLOGY NEWELL DRIVE | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $391,535 | MEDICAL RESEARCH |
| UNIVERSITY OF IOWA DEPT OF PEDIATRICS | |||||||
| 200 HAWKINS DRIVE | IOWA CITY | IA | 52242 | 426004813 | 501(C)(3) | $5,100 | MEDICAL RESEARCH |
| UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER | |||||||
| 865 RESEARCH PARKWAY SUITE 450 | OKLAHOMA CITY | OK | 73126 | 731563627 | 501(C)(3) | $157,000 | MEDICAL RESEARCH |
| UNIVERSITY OF PITTSBURGH | |||||||
| 116 ATWOOD STREET SUITE 201 | PITTSBURGH | PA | 15213 | 250965591 | 501(C)(3) | $75,000 | MEDICAL RESEARCH |
| UNIVERSITY OF ROCHESTER | |||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $341,157 | MEDICAL RESEARCH |
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | |||||||
| 1300 YORK AVENUE C-118 | NEW YORK | NY | 10065 | 131623978 | 501(C)(3) | $121,963 | MEDICAL RESEARCH |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 20 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | 0 | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JENNIFER FARMER | PersonNm |
| Title | CHIEF EXECUTIVE OFFICER | TitleTxt |
| Base Compensation Filing Org | $150,000 | 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 | $4,598 | NontaxableBenefitsFilingOrgAmt |
| Nontaxable Benefits Rltd Orgs | $0 | NontaxableBenefitsRltdOrgsAmt |
| Total Compensation Filing Org | $154,598 | TotalCompensationFilingOrgAmt |
| Total Compensation Rltd Orgs | $0 | TotalCompensationRltdOrgsAmt |
| Comp Report Prior990 Filing Org | $0 | CompReportPrior990FilingOrgAmt |
| Comp Report Prior990 Rltd Orgs | $0 | CompReportPrior990RltdOrgsAmt |
Schedule L IRS990ScheduleL
Bus Tr Involve Interested Prsn BusTrInvolveInterestedPrsnGrp (3 entries)
| Relationship DescriptionRelationshipDescriptionTxt | TransactionTransactionAmt | TransactionTransactionDesc | Sharing Of RevenuesSharingOfRevenuesInd |
|---|---|---|---|
| THOMAS HAMILTON | |||
| BOARD MEMBER | $539,000 | CONTRIBUTIONS FROM BOARD MEMBER'S ORGANIZATION (CUREFA FOUNDATION) TO FRIEDREICH'S ATAXIA RESEARCH ALLIANCE TO SUPPORT RESEARCH AND GRANT PROGRAMS. | 0 |
| PATRICK RITSCHEL | |||
| BOARD MEMBER | $116,133 | CONTRIBUTIONS FROM BOARD MEMBER. | 0 |
| BRIGID BRENNAN | |||
| BOARD MEMBER | $123,349 | CONTRIBUTIONS FROM BOARD MEMBER. | 0 |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 6 | ContributionCnt |
| Noncash Contributions Rpt F990 | $249,979 | 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 | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION B, LINE 11B | COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL NEW AND EXISTING BOARD MEMBERS 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, CEO, AND DIRECTOR FINANCE ADMINISTRATION. |
| 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 XI, LINE 9: | IMPAIRMENT ON BIOELECTRON INVESTMENT -5,458. |
| FORM 990, PART XII, LINE 2C | FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS 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. |