FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA: Form 990, tax year 2015
View the entire original 990 at ProPublica ↗
- Organization
- FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA (EIN 52-2122720)
- Tax period
- 2015-01-01 to 2015-12-31
- Filed
- 2016-05-05
- IRS object ID
- 201641269349301309
- Schema version
- 2015v2.1
- 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 M
- Schedule O
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2016-05-05T12:00:15-05:00 | ReturnTs |
| Tax Period End | 2015-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 231518888 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | MAILLIE LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 624 WILLOWBROOK LANE | AddressLine1Txt |
| City | WEST CHESTER | CityNm |
| State Abbreviation | PA | StateAbbreviationCd |
| ZIP | 19382 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2015-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 522122720 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | FRIEDREICH'S ATAXIA RESEARCH ALLIANCE | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | FRIE | BusinessNameControlTxt |
| Phone | 4848796160 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | PO BOX 1537 | AddressLine1Txt |
| City | SPRINGFIELD | CityNm |
| State Abbreviation | VA | StateAbbreviationCd |
| ZIP | 22151 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | JENNIFER FARMER | PersonNm |
| Person Title | EXECUTIVE DIRECTOR | PersonTitleTxt |
| Phone | 4848796160 | PhoneNum |
| Signature | 2016-04-28 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | EDWARD FRONCZKOWSKI CPA | PreparerPersonNm |
| PTIN | P01259092 | PTIN |
| Phone | 6106964353 | PhoneNum |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2015 | TaxYr |
| Build TS | 2016-09-27 15:27:22Z | 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 | $7,218,130 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.CUREFA.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1998 | FormationYr |
| Legal Domicile State | VA | LegalDomicileStateCd |
| Activity Or Mission | TO TREAT AND CURE FRIEDREICH'S ATAXIA BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. | ActivityOrMissionDesc |
| Voting Members Governing Body | 18 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 17 | VotingMembersIndependentCnt |
| Total Employee | 8 | TotalEmployeeCnt |
| Total Volunteers | 365 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $4,958,831 | PYContributionsGrantsAmt |
| CY Contributions Grants | $5,701,123 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $0 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $0 | CYProgramServiceRevenueAmt |
| PY Investment Income | $287,653 | PYInvestmentIncomeAmt |
| CY Investment Income | $19,427 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$3,737 | PYOtherRevenueAmt |
| CY Other Revenue | -$2,405 | CYOtherRevenueAmt |
| PY Total Revenue | $5,242,747 | PYTotalRevenueAmt |
| CY Total Revenue | $5,718,145 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $4,113,902 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $4,750,666 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $462,636 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $503,463 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $98,208 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $233,456 | PYOtherExpensesAmt |
| CY Other Expenses | $367,667 | CYOtherExpensesAmt |
| PY Total Expenses | $4,809,994 | PYTotalExpensesAmt |
| CY Total Expenses | $5,621,796 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | $432,753 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $96,349 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $4,011,934 | TotalAssetsBOYAmt |
| Total Assets EOY | $4,057,130 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $290,640 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $289,961 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $3,721,294 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $3,767,169 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | TO MARSHAL AND FOCUS THE RESOURCES AND RELATIONSHIPS NEEDED TO CURE FA BY RAISING FUNDS FOR RESEARCH, PROMOTING PUBLIC AWARENESS AND ALIGNING SCIENTISTS, PATIENTS, CLINICIANS, GOV'T AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $4,361,454 | ExpenseAmt |
| Grant | $4,094,552 | GrantAmt |
| Desc | RESEARCH & GRANT PROGRAM:FARA'S COMMITMENT TO FUNDING HIGH QUALITY RESEARCH PROJECTS THAT MOVE US CLOSER TO EFFECTIVE TREATMENTS CONTINUED AT AN ACCELERATED PACE IN 2015. IN TOTAL, FARA PROVIDED >$4.7M IN BASIC AND TRANSLATIONAL AND CLINICAL RESEARCH GRANTS, THE FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, SCIENTIFIC CONFERENCE SUPPORT AND CLINICAL RESEARCH INFRASTRUCTURE FUNDING. OVER THE PAST YEAR, 35 NEW LETTERS OF INTENT FOR FUNDING REQUESTS WERE SUBMITTED, 23 RESEARCHERS WERE INVITED TO APPLY FOR GRANT FUNDING, AND AFTER RIGOROUS PEER REVIEW, 14 WERE DETERMINED MERITORIOUS AND AWARDED FUNDING IN 2015. IN ADDITION, BASED ON EXCELLENT PROGRESS, CONTINUATION FUNDING WAS PROVIDED FOR 17 PROJECTS, FOR A TOTAL OF 31 RESEARCH GRANTS AWARDED. FARA ALSO AWARDED CONFERENCE GRANTS TO SUPPORT SCIENTIFIC MEETINGS WITH CONTENT FOCUSED ON FRIEDREICH'S ATAXIA. THESE FUNDED PROJECTS ADDRESS NUMEROUS IMPORTANT RESEARCH QUESTIONS THAT DIRECTLY TARGET FARA'S STRATEGIC RESEARCH INITIATIVES, INCLUDING EVALUATING OF MECHANISMS OF DISEASE, DRUG DISCOVERY, PRE-CLINICAL AND CLINICAL STUDIES OF LEAD CANDIDATES IN THE TREATMENT PIPELINE, ADVANCES IN GENE AND CELL THERAPY APPROACHES, ADVANCES IN DIFFERENTIATION OF INDUCED PLURIPOTENT STEM (IPS) CELL LINES FROM FA PATIENTS INTO SENSORY NEURONS AND CARDIOMYOCYTES, DEVELOPMENT OF NEW ANIMAL MODELS, CARDIAC RESEARCH AND EVALUATION OF NOVEL BIOMARKERS. SEVERAL ARE CO-FUNDED WITH OUR FRIEDREICH'S ATAXIA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA IS PROVIDING INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. 2015 FUNDED RESEARCH INITIATIVES: FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA PAIN MARCH 2014, FARA ANNOUNCED THE ESTABLISHMENT OF THE PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE. THE CENTER WAS LAUNCHED WITH A GIFT OF $3.25 MILLION (OVER 3 YEARS) PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES. THIS CENTER WILL HELP TO EXPEDITE BASIC SCIENCE AND DRUG DISCOVERY FINDINGS FOR NEW TREATMENTS, PROVIDE RESOURCES FOR CLINICAL RESEARCH AND CARE THAT WILL HELP TO INCREASE UNDERSTANDING OF THE DISEASE, AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FRIEDREICH'S ATAXIA. PROJECTS AND INVESTIGATORS BEING FUNDED INCLUDE DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- CLINICAL AND NEUROSCIENCE RESEARCH, DR, IAN BLAIR- METABOLIC BIOMARKERS, AND DR. KIM LIN- CARDIAC RESEARCH.SOME BRIEF HIGHLIGHTS OF RESEARCH OCCURRING AT THE CENTER, INCLUDING RECENT PUBLICATIONS, ARE PROVIDED BELOW: CREATED A CARDIAC RESEARCH AND CLINICAL CARE CORE AND LAUNCHED 3 NEW CARDIAC STUDIES (CARDIAC MRI, SERUM BIOMARKERS AND EXERCISE TOLERANCE) WITH INTERNATIONAL COLLABORATION CREATED A BIOMARKER CORE AND IDENTIFIED 3 NEW BLOOD BASED BIOMARKERSSTABLE ISOTOPES AND LC-MS FOR MONITORING METABOLIC DISTURBANCES IN FRIEDREICH'S ATAXIA PLATELETS. WORTH AJ, BASU SS, DEUTSCH EC, HWANG WT, SNYDER NW, LYNCH DR, BLAIR IA. BIOANALYSIS. 2015;7(15):1843-55. FRATAXIN LEVELS IN PERIPHERAL TISSUE IN FRIEDREICH ATAXIA. LAZAROPOULOS M, DONG Y, CLARK E, GREELEY NR, SEYER LA, BRIGATTI KW, CHRISTIE C, PERLMAN SL, WILMOT GR, GOMEZ CM, MATHEWS KD, YOON G,ZESIEWICZ T, HOYLE C, SUBRAMONY SH, BROCHT AF, FARMER JM, WILSON RB, DEUTSCH EC, LYNCH DR ANN CLIN TRANSL NEUROL. 2015 AUG;2(8):831-42. CREATED A PATIENT-DERIVED CELL REPOSITORY IN COLLABORATION WITH DR. NAPIERALA AT UNIVERSITY OF ALABAMA BIRMINGHAM, CELL LINES ARE BEING SHARED WITH THE RESEARCH COMMUNITY, > 6 COMPANIES AND >3 ACADEMICS SOURCING CELLS FOR DRUG DISCOVERY AND RESEARCH." ESTABLISHED A DRUG DISCOVERY CORE THAT ADVANCES INTERNALLY LED DRUG DISCOVERY AS WELL AS COLLABORATIONS WITH EXTERNAL PARTNERS. 3 NOVEL THERAPEUTIC DISCOVERIESPHENOTYPIC SCREENING FOR FRIEDREICH ATAXIA USING RANDOM SHRNA SELECTION.COTTICELLI MG, ACQUAVIVA F, XIA S, KAUR A, WANG Y, WILSON RB. J BIOMOL SCREEN. 2015 OCT;20(9):1084-90.BIOMARKER INITIATIVEBIOMARKERS ARE BIOLOGICAL MEASUREMENTS THAT IN A RELATIVELY SHORT TIMEFRAME CAN GIVE US INFORMATION INDICATING WHAT RESULT MIGHT BE SEEN IN A MUCH LONGER STUDY. FARA LAUNCHED AN INITIATIVE TO LOOK FOR NOVEL BIOMARKERS FOR FA, STARTING WITH A NOVEMBER 2014 MEETING WHERE EXPERTS CAME TOGETHER TO PRIORITIZE POSSIBLE MARKERS. A YEAR LATER, FARA, WITH ITS INDUSTRY AND ACADEMIC PARTNERS, LAUNCHED THREE NEW UNIQUE STUDIES: THE CHILDREN'S HOSPITAL OF PHILADELPHIA AND HOPITAL ERASME IN BRUSSELS HAVE INITIATED A STUDY TO LOOK AT NEUROLOGICAL BIOMARKERS-MARKERS THAT WOULD SHOW THE DEGENERATION OF THE SENSORY OR MOTOR NERVES. THEY ARE LOOKING AT FIVE DIFFERENT GROUPS OF MEASUREMENTS, WHICH MEASURE THE SIGNALS FROM SPECIFIC NERVES AND THEIR ROUTE TO THE BRAIN. THESE ARE EXPLORATORY MEASURES-THAT IS, WHILE THE EXPERTS THINK THEY COULD BE USEFUL BIOMARKERS, MANY OF THE MEASURES HAVE NEVER BEEN STUDIED IN FA PATIENTS BEFORE. THESE MAY TURN OUT TO BE HIGHLY USEFUL BIOMARKERS, IN WHICH CASE MORE DETAILED STUDIES WILL BE NEEDED, OR MAY PROVE TO BE USELESS, IN WHICH CASE THEY WILL BE DROPPED. HOWEVER, WHICHEVER THE OUTCOME, WE WILL HAVE LEARNED MORE ABOUT THE NATURE OF THE DISEASE THROUGH COMPLETION OF THE STUDIES. THE UNIVERSITY OF ROCHESTER HAS LAUNCHED A STUDY LOOKING AT THE NERVES THEMSELVES, AS OPPOSED TO THE SIGNALS SENT BY THE NERVES. THIS STUDY WILL LOOK AT FOUR GROUPS OF MEASUREMENTS TYPICALLY USED IN OTHER NERVE DISEASES TO SEE IF AND HOW THEY CHANGE IN THE COURSE OF DISEASE PROGRESSION IN FA. LIKE THE FIRST STUDY, THIS IS HIGHLY EXPLORATORY. MURDOCH CHILDREN'S RESEARCH CENTER IN AUSTRALIA AND UNIVERSITY OF SOUTH FLORIDA ARE WORKING ON VALIDATING QUANTITATIVE MEASURES OF GAIT AND BALANCE OVER TIME. EACH GROUP HAS DONE SMALL PILOT STUDIES OF THESE MEASURES AND SHOWN THAT THEY CAN DETECT DIFFERENCES IN INDIVIDUALS WITH FA. THEY ALSO HAVE SOME DATA TO SUGGEST THAT OVER THE COURSE OF DISEASE, BOTH MEASURES CHANGE SIGNIFICANTLY. THIS STUDY WILL GATHER MORE DATA OVER SHORTER PERIODS OF TIME (TYPICAL TO A CLINICAL TRIAL OF SIX MONTHS AND 12 MONTHS), DETERMINING WHICH PRECISE MEASURES ARE MOST SENSITIVE AND ACCURATE.A FEW HIGHLIGHTED NEW RESEARCH GRANTS:2015 KEITH MICHAEL ANDRUS MEMORIAL AWARD (FOR CARDIAC RESEARCH), TITLE: SCREENING OF PHENOTYPIC ABNORMALITIES IN FRIEDREICH'S ATAXIA-INDUCED PLURIPOTENT STEM CELL-DERIVED CMS, PRINCIPAL INVESTIGATOR, DR. ALICE PEBAY (CENTRE FOR EYE RESEARCH AUSTRALIA)MAJOR ADVANCES IN STEM CELL TECHNOLOGY ARE RAPIDLY MOVING TOWARDS GENERATING 'EMBRYONIC-LIKE CELLS' FROM ADULT HUMAN TISSUE. THESE CELLS, KNOWN AS INDUCED PLURIPOTENT STEM CELLS (IPSCS), HAVE ESSENTIALLY THE SAME PROPERTIES AS EMBRYONIC STEM CELLS, AND THUS CAN BE USED TO DERIVE ANY MATURE CELL TYPE, BUT WOULD BE FROM A PATIENT AND THEREFORE NOT REJECTED IF TRANSPLANTED. USING THIS TECHNOLOGY, DR. PEBAY HAS SUCCESSFULLY DERIVED IPSCS FROM FRDA PATIENTS . THESE CELLS ARE NOW BEING USED TO GENERATE CELL TYPES PRIMARILY AFFECTED IN FRDA. A REASON FOR GENERATING IPSCS IS OF COURSE FOR ASSESSMENT OF TRANSPLANTATION POTENCY, BUT ANOTHER REASON IS FOR DRUG SCREENING OF POTENT MOLECULES TO INCREASE FRATAXIN (FXN) LEVELS IN AFFECTED CELLS. DR. PEBAY HAS DEVELOPED EFFICIENT PROTOCOLS TO GENERATE HIGH NUMBERS OF INDUCED PLURIPOTENT STEM CELL (IPSC)-DERIVED HEART CELLS, WHICH CAN BE USED TO ASSESS DISEASE-SPECIFIC PHENOTYPES AND SUBSEQUENTLY AS A DRUG-SCREENING PLATFORM FOR RESCUE OF IDENTIFIED PATHOGENIC SIGNATURES. DR. PEBAY HAS IDENTIFIED A DISTINCT PHENOTYPE IN HEART CELLS WITH LOW FXN LEVELS (DERIVED FROM PEOPLE WITH FRDA). SHE WILL NOW AIM TO IDENTIFY SPECIFIC CELLULAR PROFILES, CONFIRM THESE ARE PATHOGNOMONIC FOR FRDA AND RESTORE NORMAL FUNCTION BY VARIOUS CELLULAR AND MOLECULAR APPROACHES. ADDITIONALLY, SHE WILL ALSO SCREEN COMPOUNDS THAT SHOULD INCREASE FXN LEVELS IN FRDA-CARDIOMYOCYTES. THE OUTCOME OF THIS WORK WILL BE THE CLEAR IDENTIFICATION OF A HEART-SPECIFIC PROFILE IN PATIENT-SPECIFIC CELLS AS WELL AS THE GENERATION OF A DRUG-SCREENING PLATFORM, WHICH WILL ENABLE THE IDENTIFICATION, SCREENING AND SAFETY PROFILE DETERMINATION OF NEW TREATMENTS FOR THIS DEVASTATING DISEASE. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $176,964 | ExpenseAmt |
| Grant | $5,000 | GrantAmt |
| Desc | RESEARCH CONFERENCES: FARA ORGANIZES AND SUPPORTS A NUMBER OF SCIENTIFIC CONFERENCES TO IMPROVE SHARING OF KNOWLEDGE, INSIGHTS AND ADVANCES AND BUILD COLLABORATIONS AND SYNERGISTIC CONNECTIONS BETWEEN FA RESEARCHERS. MARCH 2015- THE INTERNATIONAL ATAXIA RESEARCH CONFERENCE (IARC) HOSTED BY FARA, ATAXIA UK, ATAXIA IRELAND, AND GOFAR (ITALY) IN WINDSOR, UK WAS THE LARGEST ATAXIA RESEARCH CONFERENCE EVER HELD IN BOTH NUMBER OF PARTICIPATING DELEGATES (300+) AND SCIENTIFIC PRESENTATIONS. THE POWERFUL INTERNATIONAL PARTNERSHIP BETWEEN THE ADVOCACY GROUPS TO PLAN AND SPONSOR THE CONFERENCE WAS REFLECTED IN THE GLOBAL COLLABORATION SEEN BETWEEN LEADING ATAXIA SCIENTISTS, WITH MANY DIFFERENT LAB GROUPS HOLDING ONGOING DISCUSSIONS ABOUT DATA, TECHNIQUES, AND FUTURE COLLABORATIONS OVER THE 4-DAY CONFERENCE. THE FA RESEARCH COMMUNITY WAS IN STRONG ATTENDANCE, AS THE MAJORITY OF SCIENTISTS FARA FUNDED BETWEEN 2012-2014 WERE PRESENT TO GIVE EXCELLENT ORAL PRESENTATIONS OR POSTER PRESENTATIONS. THE LARGEST AND MOST WELL ATTENDED SESSION DURING THE CONFERENCE WAS ON DRUG DISCOVERY AND EMERGING THERAPIES, WHERE 7 ACADEMIC AND PHARMACEUTICAL REPRESENTATIVES PRESENTED THEIR ONGOING WORK IN DEVELOPING TREATMENTS FOR FA. BEFORE THE CONFERENCE BEGAN, FARA HOSTED A SPECIAL BIOMARKER MEETING WITH OVER 50 REPRESENTATIVES FROM INDUSTRY AND ACADEMIC INSTITUTIONS MAKING CONTINUED PROGRESS IN NEUROLOGICAL, CARDIAC, GENETIC, AND METABOLIC BIOMARKERS. THE PATIENT COMMUNITY WAS WELL-REPRESENTED THROUGHOUT THE CONFERENCE, WITH TALKS FROM PEOPLE LIVING WITH ATAXIA FROM AROUND THE WORLD, AS WELL AS SLIDESHOWS FEATURING PEOPLE WITH ATAXIA. IN NOVEMBER 2015, FARA ORGANIZED A MOUSE MODEL AND BIOMAKER MEETING WITH MORE THAN 70 ATTENDEES FROM THE RESEARCH COMMUNITY (ACADEMIC, PHARMA AND GOVERNMENT). UNPUBLISHED NEW DATA ON THREE NEW FA MOUSE MODELS WERE PRESENTED ALONG WITH RESEARCH TO FURTHER INTERROGATE EXISTING MODELS WITH NOVEL IMAGING TECHNIQUES AND THE DEVELOPMENT OF NEURONAL CELL LINES. AT PRESENT THERE ARE SEVERAL USEFUL MOUSE MODELS AVAILABLE. CONTINUED WORK ON DEVELOPING AN FA MOUSE WITH LONGER HUMAN REPEATS, BOTH THROUGH EFFORTS AT JACKSON LABS AND THROUGH BREEDING OF THE YG8SR MICE REMAINS IMPORTANT. THE NEW INDUCIBLE KNOCK-DOWN MOUSE DEVELOPED AT UCLA LOOKS TO BE VERY USEFUL, AND SHOULD BE TESTED IN FURTHER DETAIL IN TERMS OF STUDYING THE EFFECTS OF FRATAXIN RESTORATION. THE PUCCIO LAB AT IGBMC, STRASBOURG FR, HAS DEVELOPED A NOVEL CONDITIONAL KNOCK-OUT MODEL THAT DEVELOPS A NEURONAL FEATURES OF FA. THEY ARE BEGINNING TO LOOK AT SOME POTENTIAL BIOMARKERS IN MICE WHICH WOULD HAVE TRANSLATION TO HUMAN STUDIES, WHICH WILL BE VERY INFORMATIVE. THE BIOMARKER PORTION OF THE MEETING WAS IN FOLLOW-UP TO PREVIOUS MEETINGS THAT FARA HAS CONVENED TO FACILITATE COLLABORATIVE EXCHANGE AND RAPID SHARING OF INSIGHTS ON NOVEL BIOMARKER DEVELOPMENT. IN THE CARDIAC SESSION THERE WERE REPORTS FROM 5 GROUPS LOOKING AT VARIOUS CARDIAC BIOMARKERS INCLUDING SERUM BIOMARKERS, EXERCISE TOLERANCE, CARDIAC MRI, PET IMAGING AND ECHOCARDIOGRAPHY. IN THE MUSCLE AND METABOLIC SESSION THERE WERE PRESENTATIONS OF TWO NOVEL BIOMARKERS: CRCEST WHICH MEASURES THE AMOUNT OF PHOSPHOCREATINE IN THE MUSCLE (USING MRI) AT REST, AND THE RATE AT WHICH THE CREATINE LEVELS RECOVER FROM EXERCISE THESE MEASUREMENTS REFLECT THE RATE OF FLUX THROUGH OXIDATIVE PHOSPHORYLATION IN THE MITOCHONDRIA AND SERUM APO1A LEVELS IN FA PATIENTS. PILOT DATA IN BOTH STUDIES PRESENTED WERE ENCOURAGING. DATA WAS PRESENTED ON INSULIN RESISTENCE AND GLUCOSE TOLERANCE AND THE FINAL RECOMMENDATION WAS THAT THESE WOULD BE DIFFICULT MEASURES TO USE AS BIOMARKERS IN FUTURE STUDIES. SEVERAL GROUPS HAVE BEEN LOOKING FOR BIOMARKERS OF DISEASE PROGRESSION AND DRUG EFFECT USING GENE EXPRESSION BIOMARKERS IN FA. EACH HAS USED A UNIQUE SYSTEM TO LOOK FOR GLOBAL PATTERNS OF GENE EXPRESSION, THEN WORKED TO DETERMINE PATTERNS OF GENES THAT CHANGE WITH DISEASE. GIOVANNI COPPOLA FROM UCLA HAS USED A VERY LARGE COLLECTION OF RNA SAMPLES FROM BLOOD TO DEVELOP A PUBLICALLY AVAILABLE DATABASE WITH DATA FROM 1179 SAMPLES, INCLUDING PATIENTS, CONTROLS AND CARRIERS. THE FINAL SESSION OF NEUROLOGICAL BIOMARKERS FOCUSED ON UPDATES FROM SEVERAL ONGOING STUDIES EVALUATING STRUCTURAL AND FUNCTIONAL NEUROIMAGING TECHNIQUES, NEUROPHYSIOLOGICAL MEASURES, GAIT AND BALANCE MEASURES, AND OPHTHALMOLOGIC MEASURES. THERE IS GROWING EVIDENCE TO SUPPORT SEVERAL IMAGING MODALITIES - STRUCTURAL MRI AND MRS MEASUREMENTS APPEAR TO BE DISTINCTIVE AND CHANGE WITH TIME. MEASUREMENTS OF DOWNSTREAM CONSEQUENCES OF NEURONAL LOSS, SUCH AS VISION, GAIT AND BALANCE MEASUREMENTS, ARE LIKELY ALSO OF VALUE AND REQUIRE FURTHER STUDY. FINALLY, WE AWAIT MORE RESULTS FROM THE LARGE PANEL OF NEW BIOMARKERS BEING TESTED, TO SEE IF ANY OF THE PRELIMINARY DATA IS CONFIRMED AND CAN BE EXPANDED UPON. FARA WILL CONTINUE TO HOST BIOMARKER MEETINGS AT REGULAR INTERVALS TO FACILITATE RAPID SHARING OF DATA FROM ONGOING RESEARCH STUDIES. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $194,464 | ExpenseAmt |
| Desc | EDUCATION, AWARENESS & OUTREACH PROGRAMS: FRIEDREICH'S ATAXIA (FA) IS A RARE DISEASE; AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO RAISING AWARENESS FOR FA. FARA HAS UTILIZED BOTH TRADITIONAL AND SOCIAL MEDIA STRATEGIES TO BRING GREATER AWARENESS TO FA IN THE GENERAL PUBLIC AND TO ENGAGE AND EDUCATE THE FA COMMUNITY. FOR EXAMPLE, FARA CONDUCTED A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGED COMMUNITY PARTICIPATION LEADING UP TO RARE DISEASE DAY AND FA AWARENESS DAY. FARA ALSO HOSTED WEBINARS TO INFORM THE COMMUNITY ABOUT THE LATEST DEVELOPMENTS IN FA RESEARCH AND SOME OF THE RESULTS OF FUNDED GRANTS.FARA CO-ORGANIZED THREE PATIENT SYMPOSIUMS WITH CLINICAL RESEARCH NETWORK SITES, CHILDREN'S HOSPITAL OF PHILADELPHIA (OCTOBER 12TH, 2015, KING OF PRUSSIA, PA), UNIVERSITY OF IOWA (MAY 2ND 2015, IOWA CITY, IA) AND UNIVERSITY OF SOUTH FLORIDA (SEPTEMBER 17TH 2015, TAMPA FL). THESE SYMPOSIUMS PROVIDE AN OPPORTUNITY TO EDUCATE THE PATIENT/FAMILY COMMUNITY ON RESEARCH ADVANCES, PROGRESS ON CLINICAL TRIALS AND A UNIQUE FORUM FOR PATIENTS AND RESEARCHERS TO ENGAGE AND LEARN FROM EACH OTHER'S EXPERIENCES AND PERSPECTIVES. COMBINED THESE SYMPOSIA ACCOMMODATED MORE THAN 450 ATTENDEES.THE FARA AMBASSADOR PROGRAM WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2015. THE PROGRAM NOW INCLUDES 35 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.IN 2015, FARA FACILITATED ITS SECOND YEAR OF FORMAL TRAINING FOR THE AMBASSADOR LEADERSHIP TEAM AND AMBASSADORS. THE AMBASSADOR BLOG FEATURED POSTS SUCH AS COMMUNITY EVENT SUMMARIES, MEET THE COMMUNITY INTERVIEWS WITH PEOPLE LIVING WITH FA, AND COMMUNITY MEMBER SPOTLIGHTS. IN 2015, THEY ACHIEVED >100 POSTS WITH ~40,000 VIEWS. THE AMBASSADORS ALSO CONTINUED A CARD PROGRAM IN WHICH THEY DESIGNED CARDS TO SEND TO THE VARIOUS STAKEHOLDERS AND COMMUNITY MEMBERS THROUGHOUT THE YEAR TO SAY THANK YOU OR TO OFFER ENCOURAGEMENT. THEY ARE AVERAGING ABOUT 20 CARDS PER MONTH. ANOTHER PROJECT FACILITATED BY THE AMBASSADOR GROUP ARE MONTHLY PEER GOOGLE HANGOUT GROUPS FOR THE GREATER FA COMMUNITY TO ATTEND AND CONNECT WITH ONE ANOTHER ONLINE. FINALLY, THE AMBASSADORS HAVE CONTINUED IMPORTANT OUTREACH IN VISITING ACADEMIC LABORATORIES AND BIOPHARMACEUTICAL COMPANIES TO PROVIDE THE PATIENT PERSPECTIVE OF FA, AND SHARING THEIR PERSONAL EXPERIENCES AT FA SYMPOSIA. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $702,437 | ExpenseAmt |
| Grant | $651,114 | GrantAmt |
| Desc | CCRN AND PATIENT REGISTRY: IN ADDITION TO RESEARCH GRANTS FARA FUNDS THE ONGOING DEVELOPMENT OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES CAN INCLUDE THINGS LIKE: PATIENT REGISTRY : THE ONLY INTERNATIONAL FRIEDREICH ATAXIA PATIENT REGISTRY WITH MORE THAN 2200 INDIVIDUALS ENROLLED. THIS REGISTRY CAPTURES DEMOGRAPHIC AND CLINICAL INFORMATION ON INDIVIDUALS WITH FA AND IS USED TO RECRUIT INDIVIDUALS FOR CLINICAL TRIALS WORLD WIDE. IN 2015, THE PATIENT REGISTRY WAS USED TO RECRUIT FOR 3 CLINICAL TRIALS AND SEVERAL OTHER CLINICAL RESEARCH STUDIES. FARA PATIENT REGISTRY : WWW.CUREFA.NET/REGISTRYCOLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): AN INTERNATIONAL NETWORK OF 10 CLINICAL RESEARCH CENTERS THAT WORK TOGETHER TO ADVANCE TREATMENTS AND CLINICAL CARE FOR INDIVIDUALS WITH FRIEDREICH'S ATAXIA. HAVING SUCH A NETWORK MEANS THAT THERE ARE TRAINED PHYSICIANS AND RESEARCH COORDINATORS READY TO DO CLINICAL RESEARCH STUDIES AND TRIALS. ALSO, THIS NETWORK IS BACKED BY A DATA COORDINATION CENTER THAT FACILITATES ALL ASPECTS OF DATA COLLECTION, DATABASE MANAGEMENT, AND STATISTICAL ANALYSIS OF STUDY DATA. TO LEARN MORE, VISIT WWW.CUREFA.ORG/NETWORK.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 TEN YEARS OF NATURAL HISTORY DATA (ONGOING) IN MORE THAN 850 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 2015 TO CLINICAL RESEARCH INFRASTRUCTURE IN DIRECT FUNDING TO THE CCRN IN FA CENTERS AND RELATED CLINICAL RESEARCH ACTIVITIES. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $702,437 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $651,114 | TotalOtherProgSrvcGrantAmt |
| Total Program Service Expenses | $5,435,319 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Temp Or Permanent Endowments | 0 | TempOrPermanentEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | Yes (1) | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | 0 | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | Yes (1) | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | 0 | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | 0 | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With Officer Ent | 0 | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 5 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 8 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | 0 | UnrelatedBusIncmOverLimitInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 18 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 17 | 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 (19 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 | 0.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| RUTH DEWITT | ||||||
| TREASURER | 0.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| JENNIFER GOOD | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| PAUL AVERY | ||||||
| CHAIRMAN | 0.00 | Yes (X) | $0 | $0 | $0 | Yes (X) |
| PETER CRISP | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR HOLLY HEDRICK | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| GEOFFREY LEVITT | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| STEVE KLASKO | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| BILL ALEFANTIS | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| THOMAS HAMILTON | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| BERNARD RAVINA | ||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR SANJAY BIDICHANDANI | ||||||
| SCIENTIFIC DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| VINCENT R GIANNINI | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| DR JAMES MCARTHUR | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| TONY PLOHOROS | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| PAT RITSCHEL | ||||||
| DIRECTOR | 0.00 | Yes (X) | $0 | $0 | $0 | |
| RONALD BARTEK | ||||||
| PRESIDENT/DIRECTOR | 40.00 | Yes (X) | $135,000 | $0 | $180 | Yes (X) |
| JENNIFER FARMER | ||||||
| EXECUTIVE DIRECTOR | 40.00 | $104,102 | $0 | $180 | Yes (X) | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $239,102 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $360 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 2 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | 0 | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
| Cntrct Rcvd Greater Than100 K | 0 | CntrctRcvdGreaterThan100KCnt |
| Fundraising | $2,912,272 | FundraisingAmt |
| All Other Contributions | $2,788,851 | AllOtherContributionsAmt |
| Total Contributions | $5,701,123 | TotalContributionsAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $19,755 | TotalRevenueColumnAmt |
| Exclusion | $19,755 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $862,291 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $862,619 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$328 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$328 | TotalRevenueColumnAmt |
| Exclusion | -$328 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $634,961 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $2,912,272 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $637,366 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$2,405 | TotalRevenueColumnAmt |
| Exclusion | -$2,405 | ExclusionAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,718,145 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $0 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $17,022 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,994,527 | TotalAmt |
| Program Services | $3,994,527 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $756,139 | TotalAmt |
| Program Services | $756,139 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $257,421 | TotalAmt |
| Program Services | $198,698 | ProgramServicesAmt |
| Management And General | $18,503 | ManagementAndGeneralAmt |
| Fundraising | $40,220 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $246,042 | TotalAmt |
| Program Services | $194,254 | ProgramServicesAmt |
| Management And General | $16,304 | ManagementAndGeneralAmt |
| Fundraising | $35,484 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $86,893 | TotalAmt |
| Program Services | $82,933 | ProgramServicesAmt |
| Management And General | $3,960 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $12,000 | TotalAmt |
| Management And General | $12,000 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,952 | TotalAmt |
| Program Services | $8,868 | ProgramServicesAmt |
| Management And General | $84 | ManagementAndGeneralAmt |
| Fundraising | $6,000 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $2,699 | TotalAmt |
| Program Services | $2,699 | ProgramServicesAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $27,514 | TotalAmt |
| Program Services | $14,913 | ProgramServicesAmt |
| Management And General | $11,146 | ManagementAndGeneralAmt |
| Fundraising | $1,455 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $25,381 | TotalAmt |
| Program Services | $14,503 | ProgramServicesAmt |
| Management And General | $3,626 | ManagementAndGeneralAmt |
| Fundraising | $7,252 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $121,583 | TotalAmt |
| Program Services | $111,488 | ProgramServicesAmt |
| Management And General | $11,124 | ManagementAndGeneralAmt |
| Fundraising | -$1,029 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $49,503 | TotalAmt |
| Program Services | $48,620 | ProgramServicesAmt |
| Management And General | $883 | ManagementAndGeneralAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,316 | TotalAmt |
| Management And General | $1,316 | ManagementAndGeneralAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,282 | TotalAmt |
| Management And General | $3,730 | ManagementAndGeneralAmt |
| Fundraising | $1,552 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| BOOKS, SUBSCRIPTIONS & | $6,734 | $5,387 | $1,347 | |
| CREDIT CARD & BANK FEES | $5,850 | $140 | $1,723 | $3,987 |
| BUSINESS REGISTRATION F | $3,817 | $50 | $480 | $3,287 |
| MISCELLANEOUS | $2,300 | $2,100 | $200 | $0 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,843 | TotalAmt |
| Management And General | $1,843 | ManagementAndGeneralAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,621,796 | TotalAmt |
| Program Services | $5,435,319 | ProgramServicesAmt |
| Management And General | $88,269 | ManagementAndGeneralAmt |
| Fundraising | $98,208 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $961,837 | BOYAmt |
| EOY | $1,004,180 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $973,135 | BOYAmt |
| EOY | $484,112 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $111,200 | BOYAmt |
| EOY | $138,397 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,260 | BOYAmt |
| EOY | $9,411 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $7,135 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $3,997 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,323 | BOYAmt |
| EOY | $3,138 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $868,679 | BOYAmt |
| EOY | $1,326,392 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,091,500 | BOYAmt |
| EOY | $1,091,500 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,011,934 | BOYAmt |
| EOY | $4,057,130 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $290,640 | BOYAmt |
| EOY | $289,961 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $290,640 | BOYAmt |
| EOY | $289,961 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,393,277 | BOYAmt |
| EOY | $3,604,380 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $328,017 | BOYAmt |
| EOY | $162,789 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,721,294 | BOYAmt |
| EOY | $3,767,169 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $4,011,934 | BOYAmt |
| EOY | $4,057,130 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $96,349 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | -$50,474 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Separate Basis Fincl Stmt | Yes (X) | SeparateBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,831,171 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,174,652 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,460,547 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,572,073 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,701,123 | CurrentTaxYearAmt |
| Total | $21,739,566 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $2,831,171 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,174,652 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,460,547 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $5,572,073 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,701,123 | CurrentTaxYearAmt |
| Total | $21,739,566 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $2,037,938 | SubstantialContributorsTotAmt |
| Public Support Total170 | $19,701,628 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $12,704 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $21,555 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $9,955 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $14,051 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $19,755 | CurrentTaxYearAmt |
| Total | $78,020 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $21,817,586 | TotalSupportAmt |
| Public Support CY170 | 0.90300 | PublicSupportCY170Pct |
| Public Support PY170 | 0.93960 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Section4955 Organization Tax | $0 | Section4955OrganizationTaxAmt |
| Section4955 Managers Tax | $0 | Section4955ManagersTaxAmt |
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $4,731 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $3,375 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $8,106 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $6,162,483 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $6,170,589 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $458,529 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $114,632 | 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 | $302,630 | CurrentYearMinus3Amt |
| Current Year Minus2 | $350,101 | CurrentYearMinus2Amt |
| Current Year Minus1 | $423,349 | CurrentYearMinus1Amt |
| Current Year | $458,529 | CurrentYearAmt |
| Total | $1,534,609 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $2,301,914 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $9,100 | CurrentYearMinus3Amt |
| Current Year Minus2 | $9,100 | CurrentYearMinus2Amt |
| Current Year Minus1 | $9,100 | CurrentYearMinus1Amt |
| Current Year | $8,106 | CurrentYearAmt |
| Total | $35,406 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $75,658 | CurrentYearMinus3Amt |
| Current Year Minus2 | $87,525 | CurrentYearMinus2Amt |
| Current Year Minus1 | $105,837 | CurrentYearMinus1Amt |
| Current Year | $114,632 | CurrentYearAmt |
| Total | $383,652 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $575,478 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $5,100 | CurrentYearMinus3Amt |
| Current Year Minus2 | $5,100 | CurrentYearMinus2Amt |
| Current Year Minus1 | $5,100 | CurrentYearMinus1Amt |
| Current Year | $4,731 | CurrentYearAmt |
| Total | $20,031 | TotalAmt |
Schedule D IRS990ScheduleD
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $7,135 | OtherCostOrOtherBasisAmt |
| Depreciation | $3,997 | DepreciationAmt |
| Book Value | $3,138 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $3,138 | TotalBookValueLandBuildingsAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | INVESTMENT IN EDISON PHARMACEUTICALS, INC. | Desc |
| Book Value | $1,091,500 | BookValueAmt |
| Method Valuation | C | MethodValuationCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $1,091,500 | TotalBookValueProgramRltdAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $6,305,037 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | -$50,474 | NetUnrealizedGainsInvstAmt |
| Other Revenue | $637,366 | OtherRevenueAmt |
| Revenue Not Reported | $586,892 | RevenueNotReportedAmt |
| Revenue Subtotal | $5,718,145 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $5,718,145 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $6,259,162 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $637,366 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $637,366 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,621,796 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,621,796 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (3 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART X, LINE 2: | FARA BELIEVES IT HAS APPROPRIATE SUPPORT FOR ANY TAX POSITIONS TAKEN AND, AS SUCH, DOES NOT HAVE ANY UNCERTAIN TAX POSITIONS THAT ARE MATERIAL TO THE FINANCIAL STATEMENTS. FARA'S FEDERAL RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX (FORM 990) FOR TAX YEARS 2012, 2013 AND 2014 IS SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THE TAX RETURNS WERE FILED. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | 0 | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Specific Services ProvidedSpecificServicesProvidedTxt | Region Total ExpendituresRegionTotalExpendituresAmt |
|---|---|---|---|---|---|
| EUROPE | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $399,036 |
| EAST ASIA AND THE PACIFIC | 0 | 0 | GRANTS TO RECIPIENTS LOCATED IN REGION | RESEARCH AND GRANT PROGRAM | $357,103 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 0 | SubtotalEmployeesCnt |
| Continutation Total Office | 0 | ContinutationTotalOfficeCnt |
| Continutation Total Employee | 0 | ContinutationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 0 | TotalEmployeeCnt |
| Subtotal Spent | $756,139 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $756,139 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (8 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt |
|---|---|---|---|
| EUROPE | MEDICAL RESEARCH | $49,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $125,008 | WIRE |
| EUROPE | MEDICAL RESEARCH | $182,399 | WIRE |
| EUROPE | MEDICAL RESEARCH | $138,132 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $105,000 | WIRE |
| EAST ASIA AND THE PACIFIC | MEDICAL RESEARCH | $122,095 | WIRE |
| EUROPE | MEDICAL RESEARCH | $29,505 | WIRE |
| SOUTH ASIA | RESEARCH CONFERENCE | $5,000 | WIRE |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | FARA ENERGY BALL | Event1Nm |
| Gross Receipts Event1 | $1,624,342 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $1,113,266 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $511,076 | GrossRevenueEvent1Amt |
| Other Direct Expenses Event1 | $235,152 | OtherDirectExpensesEvent1Amt |
| Event2 | RIDE ATAXIA PHILADELPHIA | Event2Nm |
| Gross Receipts Event2 | $263,867 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $246,867 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $17,000 | GrossRevenueEvent2Amt |
| Other Direct Expenses Event2 | $49,702 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 65 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $1,659,024 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $1,552,139 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $106,885 | GrossRevenueOtherEventsAmt |
| Oth Direct Expnss Other Events | $352,512 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $3,547,233 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $2,912,272 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $634,961 | GrossRevenueTotalEventsAmt |
| Oth Direct Expnss Total Events | $637,366 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $637,366 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$2,405 | 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 (22 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|
| UNIVERSITY OF ROCHESTER | ||||||||
| 515 HYLAN BUILDING RC BOX 270140 | ROCHESTER | NY | 14627 | 160743209 | 501(C)(3) | $267,968 | MEDICAL RESEARCH | |
| UNIVERSITY OF SOUTH FLORIDA FOUNDATION | ||||||||
| 4202 EAST FOWLER AVENUE | TAMPA | FL | 33620 | 590879015 | 501(C)(3) | $186,731 | MEDICAL RESEARCH | |
| CHILDREN'S HOSPITAL OF PHILADELPHIA | ||||||||
| 34TH ST CIVIC CENTER BLVD | PHILADELPHIA | PA | 19104 | 231352166 | 501(C)(3) | $282,712 | MEDICAL RESEARCH | |
| OHIO STATE UNIVERSITY | ||||||||
| 333 W 10TH AVE | COLUMBUS | OH | 43210 | 316025986 | 501(C)(3) | $5,200 | MEDICAL RESEARCH | |
| SCRIPPS RESEARCH INSTITUTE | ||||||||
| 10550 NORTH TORREY PINES ROAD | LA JOLLA | CA | 92037 | 330435954 | 501(C)(3) | $84,439 | MEDICAL RESEARCH | OSP-TPC7 |
| THE JACKSON LABORATORY | ||||||||
| 600 MAIN STREET | BAR HARBOR | ME | 04609 | 010211513 | 501(C)(3) | $21,360 | MEDICAL RESEARCH | |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES | ||||||||
| 10920 WILSHIRE BLVD 5TH FLOOR | LOS ANGELES | CA | 90024 | 956006143 | 501(C)(3) | $45,000 | MEDICAL RESEARCH | |
| UNIVERSITY OF IOWA DEPT OF PEDIATRICS | ||||||||
| 200 HAWKINS DRIVE | IOWA CITY | IA | 52242 | 426004813 | 501(C)(3) | $4,000 | MEDICAL RESEARCH | |
| THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | ||||||||
| 3451 WALNUT STREET RM P 221 | PHILADELPHIA | PA | 19104 | 231352685 | 501(C)(3) | $1,722,750 | MEDICAL RESEARCH | FRANKLIN BLDG |
| LSU HEALTH SCIENCE CENTER | ||||||||
| 433 BOLIVAR ST | NEW ORLEANS | LA | 70112 | 726087770 | 501(C)(3) | $111,488 | MEDICAL RESEARCH | |
| REGENTS OF THE UNIVERSITY OF MINNESOTA | ||||||||
| 200 SE OAK ST 600 | MINNEAPOLIS | MN | 55455 | 416007513 | 501(C)(3) | $149,500 | MEDICAL RESEARCH | |
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | ||||||||
| 445 E 69TH ST | NEW YORK | NY | 10021 | 131623978 | 501(C)(3) | $149,990 | MEDICAL RESEARCH | |
| BAYLOR COLLEGE OF MEDICINE | ||||||||
| 1 BAYLOR PLAZA | HOUSTON | TX | 77030 | 741613878 | 501(C)(3) | $125,000 | MEDICAL RESEARCH | |
| UNIVERSITY OF VIRGINIA | ||||||||
| UVA HEALTH SYSTEM | CHARLOTTESVILLE | VA | 22908 | 540485595 | 501(C)(3) | $125,000 | MEDICAL RESEARCH | |
| ARIZONA STATE UNIVERSITY | ||||||||
| 1711 S RURAL ROAD | TEMPE | AZ | 85287 | 860196696 | 501(C)(3) | $150,000 | MEDICAL RESEARCH | |
| CATABASIS PHARMACEUTICALS INC | ||||||||
| ONE KENDALL SQUARE SUITE B 14202 | CAMBRIDGE | MA | 02139 | 263687168 | $195,114 | MEDICAL RESEARCH | ||
| MASSACHUSETTS GENERAL HOSPITAL | ||||||||
| 55 FRUIT ST | BOSTON | MA | 02114 | 042697983 | 501(C)(3) | $50,000 | MEDICAL RESEARCH | |
| PFIZER INC | ||||||||
| 235 EAST 42ND STREET | NEW YORK | NY | 10017 | 135315170 | $75,000 | MEDICAL RESEARCH | ||
| RETROTOPE | ||||||||
| 12133 FOOTHILL LANE | LOS ALTOS HILLS | CA | 94022 | 204958003 | $46,775 | MEDICAL RESEARCH | ||
| THE UNIVERSITY OF ALABAMA BIRMINGHAM | ||||||||
| 701 20TH STREET SOUTH | BIRMINGHAM | AL | 35294 | 636005396 | 501(C)(3) | $140,000 | MEDICAL RESEARCH | |
| UNIVERSITY OF FLORIDA | ||||||||
| DEPT OF NEUROLOGY L3-100 MCKNIGHT | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $33,900 | MEDICAL RESEARCH | BRAIN INSTITUTE NEWELL DRIVE |
| EMORY UNIVERSITY | ||||||||
| 201 DOWMAN DR | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | $22,600 | MEDICAL RESEARCH | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 19 | Total501c3OrgCnt |
| Total Other Org | 3 | 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. | ExplanationTxt |
Schedule M IRS990ScheduleM
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 5 | ContributionCnt |
| Noncash Contributions Rpt F990 | $196,103 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | MARKET PRICE | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (8 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 4A | 2015 KYLE BRYANT TRANSLATIONAL RESEARCH AWARD, TITLE: EVALUATION OF CAT-4001 IN FRATAXIN-DEFICIENT MOUSE MODELS AND DRG NEURONS TO ENABLE ITS THERAPEUTIC DEVELOPMENT TO TREAT FRIEDREICH'S ATAXIA, PRINCIPAL INVESTIGATOR: DR. ANDREW NICHOLS, CATABASIS PHARMACEUTICALS IN FRIEDREICH'S ATAXIA (FRDA), THE DEFICIENCY OF FRATAXIN EXPRESSION LEADS TO OXIDATIVE STRESS THAT MAY PLAY A SIGNIFICANT ROLE IN DISEASE PATHOLOGY. IMPAIRED NUCLEAR TRANSLOCATION OF NRF2, A TRANSCRIPTION FACTOR WHICH REGULATES CELLULAR RESPONSES TO OXIDATIVE STRESS, MAY BE THE CAUSATIVE FACTOR FOR THE OXIDATIVE NEURONAL DAMAGE IN FRDA. IN ADDITION, CARDIAC AND NEURONAL INFLAMMATION MAY PLAY A ROLE IN THE PATHOLOGY OF FRDA. THUS, ACTIVATION OF NRF2 TO DRIVE ANTIOXIDANT PATHWAYS AND INHIBITION OF NF-KB TO REDUCE INFLAMMATION MAY REPRESENT A GOOD APPROACH TO THE TREATMENT OF FRDA. WE THEREFORE PROPOSE TO TEST THE FUNCTIONAL ACTIVITY OF CAT-4001, A NOVEL SMALL MOLECULE DESIGNED TO ACTIVATE NRF2 AND SIMULTANEOUSLY INHIBIT NF-KB, IN ANIMAL AND CELLULAR MODELS OF FRDA. TITLES AND SUMMARIES OF MOST OF THE PROJECTS PRESENTLY FUNDED BY FARA ARE AVAILABLE AT: WWW.CUREFA.NET/RPMP/PUBLIC/PGGRANTLIST.ASPX AND COMPLETE LISTINGS OF GRANTS AWARDED BY YEAR CAN BE ACCESSED AT: WWW.CUREFA.NET/GRANTS-AWARDED.HTML RESULTS REPORTED FROM FARA AWARDED GRANTS - IN 2015, THERE WERE >20 MEDICAL AND SCIENTIFIC PUBLICATIONS THAT WERE DETAILED REPORTS OF FARA FUNDED RESEARCH. HERE ARE THREE HIGHLIGHTED PUBLICATIONS: THE SUCCESSFUL CORRECTION OF FRDA PATIENT LYMPHOBLASTS, FIBROBLASTS, AND IPSC-DERIVED NEURONS BY EXCISION OF THE GAA REPEAT EXPANSION USING A ZINC FINGER NUCLEASE. THE CORRECTED CELLS HAD INCREASED FRATAXIN EXPRESSION, ACONITASE ACTIVITY, AND ATP LEVELS. THIS WORK IS A CRITICAL STEP TOWARDS THE DEVELOPMENT OF CELL REPLACEMENT THERAPY. (LI Y, POLAK U, BHALLA A, ROZWADOWSKA N, BUTLER J, LYNCH D, DENT S, NAPIERALA M. MOLECULAR THERAPY, PUBLISHED ONLINE 11 MARCH 2015) THE IDENTIFICATION OF A SET OF UBIQUITIN-COMPETING MOLECULES THAT INCREASE MATURE FRATAXIN LEVELS AND ACONITASE ACTIVITY IN FRDA CELLS. THESE SMALL MOLECULES PREVENT FRATAXIN PRECURSOR DEGRADATION BY THE UBIQUITIN/PROTEOSOME SYSTEM AND THE RESULTS OF THIS STUDY SUPPORT THEIR POTENTIAL ROLE AS A NOVEL THERAPEUTIC STRATEGY. (RUFINI A, CAVALLO F, CONDO I, FORTUNI S, DE MARTINO G, INCANI O, DI VENERE A, BENINI M, MASSARO DS, ARCURI G, SERIO D, MALISAN F, TESTI R. NEUROBIOLOGY OF DISEASE 75:91-99, MARCH 2015) THE VISUALIZATION OF FRATAXIN EXPRESSION IN SINGLE FRDA PATIENT CELLS SHOWING THAT THE PRESENCE OF THE GAA REPEAT EXPANSION CHANGES THE POSITION OF THE FXN GENE IN THE NUCLEUS, WHICH MAY BE LINKED TO THE DECREASE IN THE NUMBER OF FXN MRNA MOLECULES AND THEIR LOWER RATE OF SYNTHESIS. THIS STUDY ADVANCES OUR UNDERSTANDING OF THE MECHANISM BY WHICH THE GAA EXPANSION REPRESSES FRATAXIN LEVELS. (SILVA A, BROWN J, BUCKLE V, WADE MARTINS R, LUFINO M. HUMAN MOLECULAR GENETICS 24:3457-71, JUNE 2015) |
| FORM 990, PART VI, SECTION B, LINE 11 | COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING. |
| FORM 990, PART VI, SECTION B, LINE 12C | ALL NEW AND EXISTING BOARD MEMBERS REQUIRED TO ANNUALLY COMPLETE A CONFLICT OF INTEREST STATEMENT |
| FORM 990, PART VI, SECTION B, LINE 15 | EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT AND EXECUTIVE DIRECTOR. |
| FORM 990, PART VI, SECTION C, LINE 18 | FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG |
| FORM 990, PART VI, SECTION C, LINE 19 | FINANCIAL STATEMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FORM 1023 ARE AVAILABLE UPON REQUEST. |
| FORM 990, PART VI LINE 17 | THE ORGANIZATION IS ALSO REGISTERED TO SOLICIT CONTRIBUTIONS IN THE STATES LISTED. |
| FORM 990, PART XII, LINE 2C | FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE 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. |