2016-05-05T12:00:15-05:00 2015-12-31 231518888 MAILLIE LLP 624 WILLOWBROOK LANE WEST CHESTER PA 19382 990 2015-01-01 522122720 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE FRIE 4848796160 PO BOX 1537 SPRINGFIELD VA 22151 JENNIFER FARMER EXECUTIVE DIRECTOR 4848796160 2016-04-28 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 2015 2016-09-27 15:27:22Z JENNIFER FARMER 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 7218130 0 X WWW.CUREFA.ORG X 1998 VA TO TREAT AND CURE FRIEDREICH'S ATAXIA BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. 18 17 8 365 0 0 4958831 5701123 0 0 287653 19427 -3737 -2405 5242747 5718145 4113902 4750666 0 0 462636 503463 0 0 98208 233456 367667 4809994 5621796 432753 96349 4011934 4057130 290640 289961 3721294 3767169 X 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. 0 0 4361454 4094552 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. 176964 5000 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. 194464 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. 702437 651114 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. 702437 651114 5435319 1 1 0 1 0 0 0 0 0 0 1 0 1 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 5 0 1 8 1 0 0 0 0 0 1 1 0 0 0 0 X 18 17 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT FL GA IL KS KY ME MD MS MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI MA X X X JENNIFER FARMER 4848796160 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 EDWARD RAMSEY DIRECTOR 0.00 X 0 0 0 MARILYN E DOWNING SECRETARY 0.00 X X 0 0 0 RUTH DEWITT TREASURER 0.00 X X 0 0 0 JENNIFER GOOD DIRECTOR 0.00 X 0 0 0 PAUL AVERY CHAIRMAN 0.00 X X 0 0 0 PETER CRISP DIRECTOR 0.00 X 0 0 0 DR HOLLY HEDRICK DIRECTOR 0.00 X 0 0 0 GEOFFREY LEVITT DIRECTOR 0.00 X 0 0 0 STEVE KLASKO DIRECTOR 0.00 X 0 0 0 BILL ALEFANTIS DIRECTOR 0.00 X 0 0 0 THOMAS HAMILTON DIRECTOR 0.00 X 0 0 0 BERNARD RAVINA SCIENTIFIC DIRECTOR 0.00 X 0 0 0 DR SANJAY BIDICHANDANI SCIENTIFIC DIRECTOR 0.00 X 0 0 0 VINCENT R GIANNINI DIRECTOR 0.00 X 0 0 0 DR JAMES MCARTHUR DIRECTOR 0.00 X 0 0 0 TONY PLOHOROS DIRECTOR 0.00 X 0 0 0 PAT RITSCHEL DIRECTOR 0.00 X 0 0 0 RONALD BARTEK PRESIDENT/DIRECTOR 40.00 X X 135000 0 180 JENNIFER FARMER EXECUTIVE DIRECTOR 40.00 X 104102 0 180 239102 0 360 2 0 0 0 0 2912272 2788851 5701123 19755 19755 862291 862619 -328 -328 -328 634961 2912272 637366 -2405 -2405 5718145 0 0 17022 3994527 3994527 756139 756139 257421 198698 18503 40220 246042 194254 16304 35484 86893 82933 3960 12000 12000 14952 8868 84 6000 2699 2699 27514 14913 11146 1455 25381 14503 3626 7252 121583 111488 11124 -1029 49503 48620 883 1316 1316 5282 3730 1552 BOOKS, SUBSCRIPTIONS & 6734 5387 1347 CREDIT CARD & BANK FEES 5850 140 1723 3987 BUSINESS REGISTRATION F 3817 50 480 3287 MISCELLANEOUS 2300 2100 200 0 1843 1843 5621796 5435319 88269 98208 961837 1004180 973135 484112 111200 138397 3260 9411 7135 3997 2323 3138 868679 1326392 1091500 1091500 4011934 4057130 290640 289961 290640 289961 X 3393277 3604380 328017 162789 3721294 3767169 4011934 4057130 96349 -50474 0 X X 0 1 X 1 0 X 2831171 3174652 4460547 5572073 5701123 21739566 2831171 3174652 4460547 5572073 5701123 21739566 2037938 19701628 12704 21555 9955 14051 19755 78020 21817586 0.90300 0.93960 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 4731 3375 8106 6162483 6170589 458529 114632 0 0 302630 350101 423349 458529 1534609 2301914 9100 9100 9100 8106 35406 75658 87525 105837 114632 383652 575478 5100 5100 5100 4731 20031 7135 3997 3138 3138 INVESTMENT IN EDISON PHARMACEUTICALS, INC. 1091500 C 1091500 X 6305037 -50474 637366 586892 5718145 0 5718145 6259162 637366 637366 5621796 0 5621796 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 0 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 399036 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 357103 0 0 0 0 0 0 756139 0 756139 EUROPE MEDICAL RESEARCH 49000 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 125008 WIRE EUROPE MEDICAL RESEARCH 182399 WIRE EUROPE MEDICAL RESEARCH 138132 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 105000 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 122095 WIRE EUROPE MEDICAL RESEARCH 29505 WIRE SOUTH ASIA RESEARCH CONFERENCE 5000 WIRE 0 0 0 0 0 0 FARA ENERGY BALL 1624342 1113266 511076 235152 RIDE ATAXIA PHILADELPHIA 263867 246867 17000 49702 65 1659024 1552139 106885 352512 3547233 2912272 634961 637366 637366 -2405 FELICIA DEROSA 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 1 UNIVERSITY OF ROCHESTER 515 HYLAN BUILDING RC BOX 270140 ROCHESTER NY 14627 160743209 501(C)(3) 267968 MEDICAL RESEARCH UNIVERSITY OF SOUTH FLORIDA FOUNDATION 4202 EAST FOWLER AVENUE TAMPA FL 33620 590879015 501(C)(3) 186731 MEDICAL RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH ST CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 282712 MEDICAL RESEARCH OHIO STATE UNIVERSITY 333 W 10TH AVE COLUMBUS OH 43210 316025986 501(C)(3) 5200 MEDICAL RESEARCH SCRIPPS RESEARCH INSTITUTE 10550 NORTH TORREY PINES ROAD OSP-TPC7 LA JOLLA CA 92037 330435954 501(C)(3) 84439 MEDICAL RESEARCH THE JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 010211513 501(C)(3) 21360 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10920 WILSHIRE BLVD 5TH FLOOR LOS ANGELES CA 90024 956006143 501(C)(3) 45000 MEDICAL RESEARCH UNIVERSITY OF IOWA DEPT OF PEDIATRICS 200 HAWKINS DRIVE IOWA CITY IA 52242 426004813 501(C)(3) 4000 MEDICAL RESEARCH THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET RM P 221 FRANKLIN BLDG PHILADELPHIA PA 19104 231352685 501(C)(3) 1722750 MEDICAL RESEARCH LSU HEALTH SCIENCE CENTER 433 BOLIVAR ST NEW ORLEANS LA 70112 726087770 501(C)(3) 111488 MEDICAL RESEARCH REGENTS OF THE UNIVERSITY OF MINNESOTA 200 SE OAK ST 600 MINNEAPOLIS MN 55455 416007513 501(C)(3) 149500 MEDICAL RESEARCH WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 445 E 69TH ST NEW YORK NY 10021 131623978 501(C)(3) 149990 MEDICAL RESEARCH BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 125000 MEDICAL RESEARCH UNIVERSITY OF VIRGINIA UVA HEALTH SYSTEM CHARLOTTESVILLE VA 22908 540485595 501(C)(3) 125000 MEDICAL RESEARCH ARIZONA STATE UNIVERSITY 1711 S RURAL ROAD TEMPE AZ 85287 860196696 501(C)(3) 150000 MEDICAL RESEARCH CATABASIS PHARMACEUTICALS INC ONE KENDALL SQUARE SUITE B 14202 CAMBRIDGE MA 02139 263687168 195114 MEDICAL RESEARCH MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 042697983 501(C)(3) 50000 MEDICAL RESEARCH PFIZER INC 235 EAST 42ND STREET NEW YORK NY 10017 135315170 75000 MEDICAL RESEARCH RETROTOPE 12133 FOOTHILL LANE LOS ALTOS HILLS CA 94022 204958003 46775 MEDICAL RESEARCH THE UNIVERSITY OF ALABAMA BIRMINGHAM 701 20TH STREET SOUTH BIRMINGHAM AL 35294 636005396 501(C)(3) 140000 MEDICAL RESEARCH UNIVERSITY OF FLORIDA DEPT OF NEUROLOGY L3-100 MCKNIGHT BRAIN INSTITUTE NEWELL DRIVE GAINESVILLE FL 32611 596002052 501(C)(3) 33900 MEDICAL RESEARCH EMORY UNIVERSITY 201 DOWMAN DR ATLANTA GA 30322 580566256 501(C)(3) 22600 MEDICAL RESEARCH 19 3 PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. X 5 196103 MARKET PRICE 0 0 0 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.