2023-07-14T11:31:01-05:00 2022-12-31 871353108 EISNER ADVISORY GROUP LLC 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2022-01-01 522122720 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE FRIE 4848796160 PO BOX 1537 SPRINGFIELD VA 22151 JENNIFER FARMER CHIEF EXECUTIVE OFFICER 4848796160 2023-07-12 1 JENNIFER FARMER 999009999 0 HELEN M MARTIN P01330899 2158818800 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z JENNIFER FARMER 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 12313824 0 X WWW.CUREFA.ORG X 1998 VA TO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. 18 16 16 500 0 0 7683701 11604349 0 0 306924 78516 -272847 -639954 7717778 11042911 7398876 9234269 0 0 1160225 1194386 0 0 225114 552566 704092 9111667 11132747 -1393889 -89836 7478784 7260774 283508 430349 7195276 6830425 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, GOVERNMENT AGENCIES AND PHARMACEUTICAL COMPANIES DEDICATED TO CURING FA AND RELATED DISORDERS. 0 0 9012749 8460000 SEE SCHEDULE O 1021876 774269 CLINICAL RESEARCH INFRASTRUCTUREIN ADDITION TO RESEARCH GRANTS, FARA FUNDS THE ONGOING DEVELOPMENT OF DOMAIN RESOURCES IN THE FORM OF VITAL CLINICAL RESEARCH INFRASTRUCTURE. CLINICAL RESEARCH INFRASTRUCTURE REFERS TO THE RESOURCES NEEDED TO FACILITATE ANY TYPE OF RESEARCH, INCLUDING CLINICAL TRIALS THAT INVOLVE PATIENTS. THESE RESOURCES INCLUDE PROGRAMS LIKE: FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY: THE FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY (FAGPR) IS THE ONLY WORLDWIDE REGISTRY OF FRIEDREICH'S ATAXIA PATIENTS. THE GOALS OF THE FAGPR ARE TO COLLECT INFORMATION ON ALL FA PATIENTS IN ONE REGISTRY, TO DEVELOP THE REGISTRY INTO A POWERFUL RESOURCE FOR RESEARCH, AND TO ENGAGE THE FA COMMUNITY IN STUDIES AIMED AT ADVANCING OUR KNOWLEDGE OF FA AND THE TREATMENTS BEING DEVELOPED. FARA PARTNERS WITH INTERNATIONAL PATIENT ADVOCACY ORGANIZATIONS THROUGH A GOVERNANCE BOARD TO ENSURE MULTI-STAKEHOLDER ENGAGEMENT AND OVERSIGHT OF THE FAGPR. MORE THAN 1000 INDIVIDUALS WITH FA ARE ENROLLED AND FAGPR WAS USED TO RECRUIT FOR SEVERAL CLINICAL TRIALS AND MANY CLINICAL RESEARCH STUDIES. TO LEARN MORE, VISIT CUREFA.NET/REGISTRY. COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): THE CCRN IS AN INTERNATIONAL NETWORK OF 14 CLINICAL RESEARCH CENTERS (UNITED STATES, CANADA, AUSTRALIA, NEW ZEALAND, AND INDIA) THAT WORK TOGETHER TO ADVANCE TREATMENTS AND CLINICAL CARE FOR INDIVIDUALS WITH FRIEDREICH'S ATAXIA. HAVING SUCH A NETWORK MEANS THAT THERE ARE TRAINED PHYSICIANS AND RESEARCH COORDINATORS READY TO DO CLINICAL RESEARCH STUDIES AND TRIALS. ALSO, THIS NETWORK IS BACKED BY A DATA COORDINATION CENTER THAT FACILITATES ALL ASPECTS OF DATA COLLECTION, DATABASE MANAGEMENT, AND STATISTICAL ANALYSIS OF STUDY DATA. TO LEARN MORE AND REVIEW A LIST OF RESEARCH PUBLICATIONS, VISIT CUREFA.ORG/NETWORK.HTMLTHE CCRN LEADS A NATURAL HISTORY AND CLINICAL OUTCOME MEASURE STUDY, CALLED FACOMS. FACOMS HAS MORE THAN 1400 INDIVIDUALS WITH FA ENROLLED AND THE LONGITUDINAL DATA HAS LED TO A BETTER UNDERSTANDING OF SYMPTOMS AND PROGRESSION OF DISEASE. FURTHERMORE, THE CCRN AND FACOMS HAVE 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 >12 CLINICAL TRIALS INCLUDING A FEW THAT WERE DESIGNED AND CONDUCTED SOLELY THROUGH NETWORK SITES. ONE CLINICAL TRIAL CONDUCTED THROUGH CCRN CENTERS HAS LED TO THE FIRST APPROVED MEDICATION OR TREATMENT OF FA, AND THE NATURAL HISTORY STUDY DATA WAS ALSO CRITICAL IN DESIGNING THE TRIAL AND UNDERSTANDING THE MEANINGFULNESS OF THE TRIAL OUTCOMES.THE FACOMS STUDY AND THE EFACTS NATURAL HISTORY STUDY (EUROPEAN UNION COUNTRIES) HAVE BEEN CONDUCTED IN PARALLEL, FOR OVER A DECADE, WITH MANY SIMILARITIES. IN 2022, FARA BROUGHT TOGETHER INVESTIGATORS OF BOTH FACOMS AND EFACTS TO COMBINE EFFORTS INTO A SINGLE GLOBAL CONSORTIUM WITH A UNIFIED NATURAL HISTORY AND CLINICAL RESEARCH INFRASTRUCTURE. THE NEW FA GLOBAL CLINICAL CONSORTIUM AND A GLOBAL NATURAL HISTORY STUDY PROTOCOL, THE UNIFAI STUDY, ARE BEING ESTABLISHED TO CONTINUE TO IMPROVE THE PANEL OF OUTCOME MEASURES THAT CAN BE USED IN FA CLINICAL TRIALS, WITH THE GOALS TO BETTER ORGANIZE AND HARMONIZE THE NATURAL HISTORY ECOSYSTEM AND ALLOW FOR A COMPLETE VIEW OF DISEASE PROGRESSION OF FA. ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2022 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG/FINANCIALS 372529 EDUCATION, AWARENESS & OUTREACH PROGRAMSFRIEDREICH ATAXIA (FA) IS A RARE DISEASE, AFFECTING 1 IN 50,000 INDIVIDUALS. FARA IS DEDICATED TO ADVOCACY AND RAISING AWARENESS FOR FA. FARA HAS UTILIZED BOTH TRADITIONAL AND SOCIAL MEDIA STRATEGIES TO BRING GREATER AWARENESS TO FA IN THE GENERAL PUBLIC AND TO ENGAGE AND EDUCATE THE FA COMMUNITY. FOR EXAMPLE, FARA CONDUCTED A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGED COMMUNITY PARTICIPATION LEADING UP TO RARE DISEASE DAY AND FA AWARENESS DAY. FARA AND THE NATIONAL ATAXIA FOUNDATION (NAF) ALSO PARTNERED ON SEVERAL ADVOCACY INITIATIVES RELEVANT TO THE ATAXIA COMMUNITY. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN FA BEING ADDED TO THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 22, RESULTING IN SIX FA RESEARCHERS BEING RECOMMENDED FOR FUNDING TOTALING OVER $14 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2022 NATIONAL ATAXIA AWARENESS DAY (S.RES 850) AND HOSTING THE FOURTH UNITED AGAINST ATAXIA HILL DAY. IN 2022, 78 CONGRESSIONAL MEETINGS WERE HELD WITH 88 FARA AND NAF ADVOCATES PARTICIPATING FROM 31 STATES AND THE DISTRICT OF COLUMBIA. THE PRIMARY ASK WAS TO BROADEN THE DEFINITION ON THE CDMRP FROM "FRIEDREICH'S ATAXIA" TO "HEREDITARY ATAXIA", WHICH WOULD PROVIDE ADDITIONAL FUNDING FOR ATAXIA RESEARCHERS IN FY23. PRESIDENT BIDEN SIGNED THE FISCAL YEAR (FY) 23 CONGRESSIONAL BUDGET ON DECEMBER 29 WHICH LISTED "HEREDITARY ATAXIA" UNDER THE CDMRP'S PEER REVIEWED MEDICAL RESEARCH PROGRAM. THE FARA AMBASSADOR PROGRAM, WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2022. THE PROGRAM NOW INCLUDES >80 PARTICIPANTS. THE MISSION OF THE FARA AMBASSADORS IS TO BE POSITIVE, SUPPORTIVE, PEER REPRESENTATIVES FOR THE FA COMMUNITY; ACTIVELY RAISING AWARENESS AND FUNDS FOR FARA. THE FARA AMBASSADOR PROGRAM MEMBERS ORGANIZE SERVICE PROJECT TEAMS INCLUDING:1. A BLOG TEAM THAT FACILITATES WEEKLY MEET THE COMMUNITY INTERVIEWS WITH PEOPLE LIVING WITH FA AND A MONTHLY MEET THE RESEARCHER INTERVIEW. 2. A CARD WRITING TEAM THAT WRITES PERSONALIZED CARDS TO SEND TO THE VARIOUS STAKEHOLDERS AND COMMUNITY MEMBERS THROUGHOUT THE YEAR TO SAY THANK YOU OR TO OFFER ENCOURAGEMENT. 3. A MONTHLY PEER ZOOM HANGOUT GROUPS FOR THE GREATER FA COMMUNITY TO ATTEND AND CONNECT WITH ONE ANOTHER ONLINE (ONE IS GEARED TO ADULTS, AND ONE IS FOR TEENS WITH FA). 4. A SOCIAL MEDIA TEAM THAT GENERATES ENGAGING CONTENT IN SUPPORT OF FARA INITIATIVES AND CAMPAIGNS. 5. A SPEAKING TEAM WHERE PARTICIPANTS PRACTICE TELLING THEIR STORY LIVING WITH FA ON BEHALF OF THE ORGANIZATION.AMBASSADORS AND OTHER COMMUNITY REPRESENTATIVES CONNECTED WITH MANY OF FARA'S ACADEMIC AND INDUSTRY PARTNERS AS WELL AS REGULATORY AGENCIES LIKE THE FOOD AND DRUG ADMINISTRATION BY SERVING ON PATIENT PANELS AT 12 EVENTS. AMBASSADORS ALSO PARTICIPATED IN EDUCATION PROGRAMS TARGETING MEDICAL PROFESSIONALS, E.G., SPEAKING TO TRAINEES IN GENETIC COUNSELING PROGRAMS AND MEDICAL STUDENTS. FOR MORE INFORMATION VISIT CUREFA.ORG/AMBASSADORS.GROUP FARA HOSTED SEVERAL EDUCATION AND ENGAGEMENT INITIATIVES IN 2022. FOR EXAMPLE. FARA CONTINUED A VIDEO SERIES TO EDUCATE FA FAMILIES AND SUPPORTERS ON THE FARA GRANT PROGRAM. EACH EPISODE EXPLAINS A TYPE OF RESEARCH FUNDED BY FARA IN A 5-MINUTE ANIMATED VIDEO, NARRATED BY AN FA COMMUNITY MEMBER. FARA RELEASED SIX MINUTES OF SCIENCE VIDEOS IN 2022. FARA ALSO OFFERED THE FLASH TALKS SERIES IN MAY WHICH ALLOWED YOUNG INVESTIGATORS TO EXPLAIN THEIR RESEARCH IN LAYMAN TERMS AND TO ANSWER QUESTIONS IN A VIRTUAL FORMAT. IN OCTOBER, FARA PUBLISHED A GUIDE FOR CLINICAL TRIALS PARTICIPANTS. THIS 12-PAGE GUIDE CONTAINS INFORMATION ON THE DIFFERENT PHASES OF CLINICAL TRIALS, TERMS TO KNOW, CLINICAL TRIAL ETIQUETTE, SAFETY MONITORING, AND A GUIDE TO INFORMED CONSENT. IT IS INTENDED TO HELP PEOPLE UNDERSTAND THE DRUG DEVELOPMENT PROCESS SO THAT THEY CAN MAKE AN INFORMED DECISION ON PARTICIPATING IN CLINICAL TRIALS. 222693 WORKSHOPS, SYMPOSIA, & CONFERENCESFARA HOSTED A HYBRID IN-PERSON AND VIRTUAL SINGLE-DAY EDUCATIONAL SYMPOSIUM FOR >200 PATIENTS AND CAREGIVERS IN KING OF PRUSSIA, PA (SEPTEMBER 25, 2022). THIS SYMPOSIUM PROVIDED AN OPPORTUNITY TO EDUCATE THE PATIENT/FAMILY COMMUNITY ON RESEARCH ADVANCES, PROGRESS ON CLINICAL TRIALS AND WAS A UNIQUE FORUM FOR PATIENTS AND RESEARCHERS TO ENGAGE AND LEARN FROM EACH OTHER'S EXPERIENCES AND PERSPECTIVES. INTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN PARTNERSHIP WITH THE NATIONAL ATAXIA FOUNDATION AND ATAXIA UK, FARA ALSO ORGANIZED AND SPONSORED THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH IN NOVEMBER 2022. OVER 450 PEOPLE ATTENDED, INCLUDING THOSE FROM ACADEMIA, INDUSTRY, AND PATIENT ADVOCACY GROUPS. MORE THAN ONE THIRD OF THE PARTICIPANTS WERE JUNIOR INVESTIGATORS WHICH SUPPORTS THE GOAL OF BRINGING NEW TALENT TO THE FIELD AND GROWING THE NEXT GENERATION OF ATAXIA RESEARCHERS. IN ADDITION TO THE OPPORTUNITY TO VIEW NEARLY 300 PRESENTATIONS, MOST ATTENDEES REPORTED MAKING NEW CONTACTS, WHICH STIMULATES COLLABORATION AND PARTNERSHIPS. KEY TAKEAWAYS FROM THE MEETING INCLUDED NEW INSIGHTS INTO THE DISEASE MECHANISMS IN FA, POTENTIAL NEW BIOMARKERS, AND THE USE OF DIGITAL ASSESSMENTS OF ATAXIA.GENE THERAPY IN FA MEETINGIN 2022, FARA ORGANIZED A MEETING WITH THE FOOD AND DRUG ADMINISTRATION (FDA) AND OVER A DOZEN COMPANIES WORKING ON GENE THERAPY AND GENE EDITING PROGRAMS FOR FA. THE MEETING RESULTED IN ALIGNMENT WITH THE REGULATORY AGENCY ON SEVERAL ASPECTS OF THESE INNOVATIVE APPROACHES. 222693 10629847 1 1 0 1 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 1 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 3 0 1 16 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 18 16 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 JENNIFER FARMER 4848796160 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 RONALD BARTEK PRESIDENT/DIRECTOR 40.00 X X 110000 0 3811 RUTH ACTON TREASURER/DIR OF FINANCE ADMIN, HR 25.00 X X 45203 0 13197 PAUL AVERY CHAIRMAN/ DIRECTOR 10.00 X X 0 0 0 MARILYN E DOWNING SECRETARY/ DIRECTOR 10.00 X X 0 0 0 DR SANJAY BIDICHANDANI DIRECTOR 10.00 X 0 0 0 BRIGID BRENNAN DIRECTOR/ GENERAL COUNSEL 20.00 X 0 0 0 THOMAS BRENNINKMEIJER DIRECTOR 10.00 X 0 0 0 ALEX FIELDING DIRECTOR 10.00 X 0 0 0 JENNIFER GOOD DIRECTOR 10.00 X 0 0 0 THOMAS HAMILTON DIRECTOR 10.00 X 0 0 0 DR HOLLY HEDRICK DIRECTOR 10.00 X 0 0 0 DEREK G HENNECKE DIRECTOR 10.00 X 0 0 0 DR STEVE KLASKO DIRECTOR 10.00 X 0 0 0 DR KATHY MATHEWS DIRECTOR 10.00 X 0 0 0 DR JAMES MCARTHUR DIRECTOR 10.00 X 0 0 0 TONY PLOHOROS DIRECTOR 10.00 X 0 0 0 PATRICK RITSCHEL DIRECTOR 10.00 X 0 0 0 DR JAMES R RUSCHE DIRECTOR 10.00 X 0 0 0 JENNIFER M FARMER CHIEF EXECUTIVE OFFICER 40.00 X 150000 0 5228 BARBARA A TATE CHIEF SCIENTIFIC OFFICER 40.00 X 250000 0 7108 ELISABETTA SORAGNI DIRECTOR OF RESEARCH 40.00 X 106090 0 14246 661293 0 43590 4 0 1 0 CAMENE BVBA-MYRIAM ABOUAZAR-RAI BRUSSELBAAN 473 SINTPIETERSLEEUW FLEMISH BRABANT BE 1600 INTERNATIONAL RESEARCH AND ADVOCACY CONS 103321 1 11998 4008043 7584308 232995 11604349 65540 65540 222576 209600 12976 12976 12976 421359 4008043 1061313 -639954 -639954 11042911 0 0 -561438 7466286 7466286 1767983 1767983 327439 218116 67934 41389 700894 607615 59486 33793 20945 12728 1384 6833 62268 28105 7326 26837 82840 54865 7773 20202 27405 27405 13000 13000 244166 202527 22144 19495 46027 14330 6136 25561 44563 28710 8373 7480 149561 124349 24394 818 16922 9278 7644 SUBSCRIPTIONS & LICENSI 97343 81515 5614 10214 BAD DEBT 22500 22500 CREDIT CARD & BANK FEES 19070 108 164 18798 FACILITIES & EQUIPMENT 8997 2778 5933 286 14538 6832 1942 5764 11132747 10629847 277786 225114 3334786 3002584 1807813 1961536 259819 369612 94042 52398 0 0 1976866 1728750 5458 5458 0 140436 7478784 7260774 261148 276962 22360 11490 0 141897 283508 430349 X 4608013 5146272 2587263 1684153 7195276 6830425 7478784 7260774 X -89836 -349445 74430 X X 0 1 X 1 0 X 7662625 7146206 12628384 7808772 11604349 46850336 7662625 7146206 12628384 7808772 11604349 46850336 9138897 37711439 42296 45345 38997 47170 65540 239348 47089684 0.80080 0.83160 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3567 17017 20584 11823433 11844017 742201 185550 0 0 567238 564107 629867 742201 2503413 3755120 12259 9997 19687 20584 62527 141810 141027 157467 185550 625854 938781 7316 5966 3570 3567 20419 0 LEASE LIABILITIES, CURRENT PORTION 57082 LONG-TERM LEASE LIABILITIES 84815 141897 X 11734298 -349445 153000 887832 691387 11042911 0 11042911 12099149 153000 813402 966402 11132747 0 11132747 PART X, LINE 2: THE INTERNAL REVENUE SERVICE HAS CLASSIFIED FARA AS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES RECOGNIZED IN AN ENTERPRISE'S FINANCIAL STATEMENTS. MANAGEMENT HAS ANALYZED THE TAX POSITIONS TAKEN BY FARA, AND HAS CONCLUDED THAT AS OF DECEMBER 31, 2022 AND 2021, THERE ARE NO UNCERTAIN TAX POSITIONS TAKEN OR EXPECTED TO BE TAKEN THAT WOULD REQUIRE RECOGNITION OF A LIABILITY OR DISCLOSURE IN THE FINANCIAL STATEMENTS. FARA RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR THE YEARS ENDED DECEMBER 31, 2022 AND 2021. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE 813,402. PRIOR YEAR GRANT REFUNDS INCLUDED IN SUPPORT ON FINANCIAL STATEMENTS 74,430. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE 813,402. 1 EUROPE 0 1 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 963807 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 642045 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 142631 CANADA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 19500 0 1 0 0 0 1 1767983 0 1767983 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 221139 WIRE 0 EUROPE MEDICAL RESEARCH 91292 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 254716 WIRE 0 EUROPE MEDICAL RESEARCH 185250 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 107470 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 6800 WIRE 0 EUROPE MEDICAL RESEARCH 30454 WIRE 0 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, MEDICAL RESEARCH 46935 WIRE 0 NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 19500 WIRE 0 EUROPE MEDICAL RESEARCH 229940 WIRE 0 EUROPE MEDICAL RESEARCH 125000 WIRE 0 EUROPE MEDICAL RESEARCH 36617 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 45800 WIRE 0 EUROPE MEDICAL RESEARCH 167607 WIRE 0 EUROPE MEDICAL RESEARCH 5110 WIRE 0 EUROPE MEDICAL RESEARCH 20000 WIRE 0 EUROPE MEDICAL RESEARCH 72536 WIRE 0 SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, MEDICAL RESEARCH 95696 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 6120 WIRE 0 16 3 0 0 0 0 0 0 PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS. PART III ACCOUNTING METHOD: FARA ENERGY BALL 1980460 1782630 197830 174038 10540 316423 RIDEATAXIA PHILA 408942 395117 13825 75434 17 2040000 1830296 209704 484878 4429402 4008043 421359 174038 10540 876735 1061313 -639954 FELICIA DEROSA 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 1 CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH ST CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 1146693 0 MEDICAL RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION 34TH ST CIVIC CENTER BLVD PHILADELPHIA PA 19104 232237932 501(C)(3) 425000 0 MEDICAL RESEARCH OHIO STATE UNIVERSITY 333 W 10TH AVE COLUMBUS OH 43210 316025986 501(C)(3) 5300 0 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10920 WILSHIRE BLVD 5TH FLOOR LOS ANGELES CA 90024 956006143 501(C)(3) 40950 0 MEDICAL RESEARCH UNIVERSITY OF FLORIDA DEPT OF NEUROLOGY L3-100 MCKNIGHT BRAIN INSTITUTE NEWELL DRIVE GAINESVILLE FL 32611 596002052 501(C)(3) 228887 0 MEDICAL RESEARCH UNIVERSITY OF ROCHESTER 515 HYLAN BUILDING RC BOX 270140 ROCHESTER NY 14627 160743209 501(C)(3) 417389 0 MEDICAL RESEARCH ALBANY RESEARCH INSTITUTE 113 HOLLAND AVE ALBANY NY 12208 141716021 501(C)(3) 108445 0 MEDICAL RESEARCH TRUSTREES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT ST RM 310 PHILADELPHIA PA 19104 231352685 501(C)(3) 342044 0 MEDICAL RESEARCH WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 1300 YORK AVENUE C-118 NEW YORK NY 10065 131623978 501(C)(3) 100000 0 MEDICAL RESEARCH STANFORD UNIVERSITY 2770 SAND HILL ROAD MENLO PARK CA 94025 941156365 501(C)(3) 125000 0 MEDICAL RESEARCH THE BROAD INSTITUTE 415 MAIN STREET CAMBRIDGE MA 02142 263428781 501(C)(3) 2291000 0 MEDICAL RESEARCH BURKE NEUROLOGICAL INSTITUTE 785 MAMARONECK AVENUE WHITE PLAINS NY 10605 133434924 501(C)(3) 75000 0 MEDICAL RESEARCH CYAGEN BIOMODELS LLC 2255 MARTIN AVE STE E SANTA CLARA CA 95050 820941939 24539 0 MEDICAL RESEARCH MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 041564655 501(C)(3) 71875 0 MEDICAL RESEARCH ST JUDE CHILDREN'S RESEARCH HOSPITAL 262 DANNY THOMAS PLACE MEMPHIS TN 38105 620646012 501(C)(3) 64902 0 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 125000 0 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF MINNESOTA 200 SE OAK ST 600 MINNEAPOLIS MN 55455 416007513 501(C)(3) 278913 0 MEDICAL RESEARCH THOMAS JEFFERSON UNIVERSITY 1020 WALNUT STREET PHILADELPHIA PA 19107 232829095 501(C)(3) 150000 0 MEDICAL RESEARCH UNIVERSITY OF SOUTH FLORIDA FOUNDATION 4202 EAST FOWLER AVE TAMPA FL 33620 590879015 501(C)(3) 50000 0 MEDICAL RESEARCH THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK 154 HAVEN AVENUE SECOND FLOOR NEW YORK NY 10032 135598093 501(C)(3) 200000 0 MEDICAL RESEARCH CALIFORNIA INSTITUTE OF TECHNOLOGY 1200 EAST CALIFORNIA BLVD PASADENA CA 91125 951643307 501(C)(3) 67361 0 MEDICAL RESEARCH STEALTH BIOTHERAPEUTICS INC 123 HIGHLAND AVENUE FLOOR 2 NEEDHAM HEIGHTS MA 02494 261512085 169390 0 MEDICAL RESEARCH UT SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 501(C)(3) 365500 0 MEDICAL RESEARCH VESIGEN INC 790 MEMORIAL DRIVE SUITE 103 CAMBRIDGE MA 01239 842449757 248611 0 MEDICAL RESEARCH WHITEHEAD INSTITUTE FOR BIOMEDICAL RESEARCH 455 MAIN STREET CAMBRIDGE MA 02142 061043412 501(C)(3) 100000 0 MEDICAL RESEARCH YALE UNIVERSITY 25 SCIENCE PARK 150 MUNSON STREET NEW HAVEN CT 06520 060646973 501(C)(3) 100000 0 MEDICAL RESEARCH TRUSTEES OF THE INDIANA UNIVERSITY 509 EAST 3RD ST BLOOMINGTON IN 47401 356001673 501(C)(3) 137187 0 MEDICAL RESEARCH 24 3 PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. ONCE GRANTS ARE AWARDED THE ORGANIZATION REQUIRES REGULAR RESEARCH AND FINANCIAL REPORTS FROM THE INSTITUTIONS. X X 0 0 0 0 0 0 0 0 0 BARBARA A TATE CHIEF SCIENTIFIC OFFICER 250000 0 0 0 0 0 6350 0 758 0 257108 0 0 0 JENNIFER M FARMER CHIEF EXECUTIVE OFFICER 150000 0 0 0 0 0 4500 0 728 0 155228 0 0 0 X 5 176540 HI-LOW DATE OF GIFT X AUCTION ITEMS 196 56455 0 1 0 PART I, COLUMN (B): FOR LINE 9, THE ORGANIZATION RECOGNIZES IN COLUMN B EACH UNIQUE NON-CASH CONTRIBUTION RECEIVED FROM A DONOR. FOR LINE 25, THE COUNT OF AUCTION ITEMS REPRESENTS EACH INDIVIDUAL CONTRIBUTION OF TANGIBLE ITEMS BY A DONOR. FORM 990, PART III, LINE 4A RESEARCH AND GRANT PROGRAM FARA DEPLOYS FINANCIAL RESOURCES TO ACCELERATE RESEARCH FOR FRIEDREICH'S ATAXIA (FA). IN 2022, FARA AWARDED NEARLY $8.5 MILLION IN RESEARCH FUNDING. THIS INCLUDED 50 ACTIVE RESEARCH PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH AND FARA DIRECTED PROJECTS. FARA GRANT PROGRAM FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-TWO NEW GRANTS AND APPROVED CONTINUED FUNDING FOR SIXTEEN GRANTS. NINE OF THESE NEW GRANTS WERE AWARDED TO INVESTIGATORS NEW TO FA RESEARCH, INCLUDING FOUR JUNIOR INVESTIGATORS. RESEARCHERS IN SEVEN COUNTRIES ARE RECEIVING RESEARCH FUNDING FROM FARA. FARA'S GRANT PROGRAM IS FUNDING RESEARCH THAT FURTHERS THE UNDERSTANDING OF FA AT A VERY BASIC OR MECHANISTIC LEVEL, PROMOTES DRUG DISCOVERY, ADVANCES GENE AND CELL THERAPY APPROACHES, SEEKS TO IDENTIFY NEW BIOMARKERS AND CLINICAL OUTCOME ASSESSMENTS THAT CAN INFORM AND SUPPORT FUTURE CLINICAL TRIALS AND INVESTIGATES APPROACHES TO IMPROVE CLINICAL OUTCOMES FOR THOSE LIVING WITH FA. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH FARA'S FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT. FARA HAS IDENTIFIED OPPORTUNITIES TO FUND RESEARCH AT INSTITUTIONS WHERE THERE ARE MULTIPLE INVESTIGATORS WITH AN EXPERTISE AND COMMITMENT TO FA RESEARCH AND/OR OPPORTUNITY TO LEVERAGE TECHNOLOGIES, INNOVATION OR NEW GROWTH TO THE FA COMMUNITY. BY ESTABLISHING THESE INSTITUTIONAL FUNDING PROGRAMS, FARA IS ABLE TO PROMOTE COLLABORATION AND SYNERGY ACROSS BASIC, TRANSLATIONAL AND CLINICAL RESEARCH, PROVIDE A LONGER-TERM COMMITMENT FOR RESEARCH, ATTRACT NEW INVESTIGATORS, AND LEVERAGE THE INSTITUTIONS RESOURCES AND ENGAGEMENT. FARA PROVIDES INSTITUTIONAL BASED RESEARCH SUPPORT FOR THE FA CENTER OF EXCELLENCE AT PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA AND THE FA ACCELERATOR PROGRAM THE BROAD INSTITUTE. FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA, PA THE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT TO PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA, PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES/ CUREFA FOUNDATION. PROJECTS AND INVESTIGATORS WITH CONTINUED FUNDING INCLUDED DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY, AND DR. JENNIFER PHILLIPS CREMINS- GENETIC MODELING. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. FOR EXAMPLE, DR. LYNCH, WHO ACTIVELY PARTICIPATES IN BOTH BASIC AND CLINICAL RESEARCH, IS INVESTIGATING WHETHER THE METABOLIC ALTERATIONS HE HAS OBSERVED IN PATIENTS COULD BE DUE TO DYSFUNCTIONS OF SPECIFIC ENZYMES WHEN FRATAXIN LEVELS ARE LOW. HIS FINDINGS HAVE THE POTENTIAL TO IDENTIFY NEW THERAPEUTIC TARGETS. ANOTHER EXAMPLE IS THE EXRX-FA TRIAL, AN NIH SUPPORTED CLINICAL TRIAL THAT INSPIRED THE PRECLINICAL STUDIES ON MUSCLE AND HEART OF THE COE COLLABORATORS, ERIN SEIFERT, PHD AND JOSEPH BAUR, PHD. IN ADDITION, WITH SUPPORT FROM FARA, THE EXRX-FA CLINICAL TRIAL HAS BEEN EXPANDED TO INCLUDE COLLECTION OF BIOMARKER DATA, MEASURES THAT COULD BE USEFUL IN FUTURE THERAPEUTIC TRIALS. A MAJOR ACCOMPLISHMENT IN 2022, LED BY DAVID LYNCH, MD, PHD, WAS THE COMPLETION AND PUBLICATION OF STUDIES OF OMAVELOXOLONE, A NEW TREATMENT THAT HAS COMPLETED CLINICAL TRIALS IN FA. THESE STUDIES PROVIDED THE EVIDENCE NEEDED TO RECEIVE AN EXPEDITED REVIEW OF THIS FIRST NEW DRUG APPLICATION AT THE FDA. THE INVESTIGATORS AT THE COE AT CHOP CONTRIBUTE TO FINDING TREATMENTS FOR FA BY REGULARLY PUBLISHING THEIR WORK, TRAINING NEW INVESTIGATORS TO COMMIT TO RESEARCH ON FA, PARLAYING FARA FUNDING INTO LARGER GRANTS FROM NIH AND BY BEING THE LARGEST SITE FOR THE FA NATURAL HISTORY STUDY. FRIEDREICH'S ATAXIA ACCELERATOR AT THE BROAD INSTITUTE OF MIT AND HARVARD THE FRIEDREICH'S ATAXIA ACCELERATOR (FAA) AT THE BROAD INSTITUTE OF MIT AND HARVARD WAS ESTABLISHED IN AUGUST 2020. FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA, THE FAA IS A COLLABORATIVE, MULTI-DISCIPLINARY EFFORT AIMED AT GALVANIZING RESEARCH INTO FA AND SEEDING A GROWING COMMUNITY ACROSS BROAD, MIT, HARVARD AND AFFILIATED INSTITUTIONS COMMITTED TO TACKLING FA. LED BY VAMSI MOOTHA, MD, THE FAA INVESTIGATORS INCLUDE GARY RUVJUM, PHD, DAVID LIU, PHD, CHRISTINE SEIDMAN, MD,JONATHAN SEIDMAN, PHD, ANOOPUM GUPTA, MD AND ANTHONY PHILIPPAKIS, MD. THE FIRST THREE YEARS OF FAA SUPPORTED RESEARCH INITIATIVES TO UNDERSTAND THE DEEP BIOCHEMICAL BASIS OF FA AS WELL AS TO EVALUATE THE THERAPEUTIC POTENTIAL OF NEW EARLY-STAGE INNOVATIVE APPROACHES IN ANIMAL MODELS. PROJECTS INCLUDE EVALUATING HYPOXIA AS A THERAPY, DIRECT EDITING OF DNA TO REPAIR THE FA REPEAT LESION, IDENTIFYING GENETIC/CHEMICAL MODIFIERS THAT CAN BYPASS THE NEED FOR FRATAXIN, AND UNDERSTANDING THE CAUSE OF FA CARDIOMYOPATHY. OVER THE FIRST 2.5 YEARS OF FAA, INVESTMENT IN UNDERSTANDING FA BASIC AND TRANSLATIONAL BIOLOGY HAS ALREADY YIELDED NEW DISCOVERIES (WITH FOUR NEW RESEARCH PAPERS SUBMITTED) AND SUGGEST COMPLETELY NEW THERAPEUTIC AVENUES (WITH THREE NEW PATENTS SUBMITTED). IN 2022, TWO NEW PROJECTS WERE LAUNCHED. ONE TO ACCELERATE ADVANCEMENT OF EFFECTIVE TREATMENTS BY DEVELOPING AT HOME ASSESSMENTS OF MOVEMENT AND SPEECH. THE OTHER TO LEVERAGE EXISTING LARGE BIOBANKS OF GENETIC SEQUENCE DATA TO FURTHER UNDERSTAND THE PREVALENCE OF FA, AS WELL AS POTENTIALLY UNCOVER NOVEL GENETIC MODIFIERS OF THE CONDITION. FAA HAS HAD AN IMPACT IN COMMUNITY BUILDING. DURING THE PAST 2.5 YEARS, FAA HAS ENABLED OVER 20 RESEARCHERS ACROSS FIVE LABORATORIES TO APPLY THEIR EXISTING EXPERTISE TOWARD FA RESEARCH. TWO FAA POST-DOCTORAL FELLOWS HAVE JUST LAUNCHED THEIR OWN INDEPENDENT LABORATORIES THAT WILL CONTINUE FA-RELATED RESEARCH: TSLIL AST AT THE WEIZMANN INSTITUTE AND MANDA ARBAB AT THE BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL NEUROSCIENCE CENTER AND HARVARD MEDICAL SCHOOL. TSLIL AST'S FA RESEARCH RECEIVED THE PRESTIGIOUS ERIC S. LANDER AWARD RECOGNIZING OUTSTANDING ACCOMPLISHMENT IN SCIENCE. FARA DIRECTED RESEARCH IN 2022, FARA FUNDED DIRECTED RESEARCH PROGRAMS INCLUDING: 1. MAINTAINING A REPOSITORY OF FA CELL LINES FOR RESEARCH HTTPS://LABS.UTSOUTHWESTERN.EDU/NAPIERALA-LAB 2. TRACK-FA, A GLOBAL NEUROIMAGING CONSORTIUM ESTABLISHED IN 2020, DESIGNED A NATURAL HISTORY STUDY TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. PARTICIPATING CLINICAL SITES IN USA, BRAZIL, GERMANY, AND AUSTRALIA CONTINUED ENROLLMENT IN 2022. THE GOAL IS TO ENROLL 200 INDIVIDUALS WITH FA AND 100 MATCHED CONTROLS AND CONDUCT NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS. AT THE CLOSE OF 2022, 122 INDIVIDUALS WITH FA AND 43 CONTROLS HAD BEEN ENROLLED. THE CONSORTIUM PUBLISHED ITS FIRST SCIENTIFIC ARTICLE THAT PRESENTS THE BACKGROUND ON THE TRACK-FA STUDY AND THE SCIENTIFIC PROCEDURES. THE PUBLICATION IS OPEN ACCESS AT: HTTPS://JOURNALS.PLOS.ORG/PLOSONE/ARTICLE?ID=10.1371/JOURNAL.PONE.026964 9 3. FOSTERING A COLLABORATIVE EFFORT BETWEEN RESEARCHERS AT UNIVERSITY OF OKLAHOMA, UNIVERSITY OF TEXAS SOUTHWESTERN, AND UNIVERSITY OF PENNSYLVANIA TO STUDY THE PRECISE MECHANISM OF THIS GENE SILENCING IN DIFFERENT TISSUES AND MODELS OVER TIME. 4. ASSEMBLING GLOBAL CLINICAL EXPERTS TO LEAD A RE-EVALUATION AND UPDATE TO THE CLINICAL MANAGEMENT GUIDELINES (CMG) IN FA. AN UPDATE TO THE CMG FOR FA WAS PUBLISHED IN 2022 FOR REFERENCE USE BY PHYSICIANS, AND PATIENTS. THIS PROJECT, LED BY DR. LOUISE CORBEN, IS THE RESULT OF THE EFFORTS OF A 12-PERSON STEERING COMMITTEE, 70 EXPERT AUTHORS, AND AN 11-PERSON PATIENT AND CAREGIVER PANEL. THE CMGS CAN BE ACCESSED AT HTTPS://FRDAGUIDELINES.ORG AND INCLUDES TOPIC CHAPTERS, LAY SUMMARIES, RECOMMENDATIONS, BEST PRACTICE STATEMENTS, AND LINKS TO THE EVIDENCE TO RECOMMENDATION TABLES. ALSO, THERE ARE THREE NEW TOPICS: EMERGENCY MEDICINE, DIGITAL AND ASSISTIVE TECHNOLOGIES, AND MENTAL HEALTH. 5. DEVELOPMENT AND VALIDATION OF A POTENCY ASSAY FOR USE IN THE DEVELOPMENT OF GENE AND PROTEIN REPLACEMENT THERAPIES. 6. LEADING WORK TO CREATE A NEW DISEASE MODEL FOR PRE-CLINICAL RESEARCH, AN FA RAT MODEL. 7. IDENTIFYING AND FUNDING RESEARCH TO UNDERSTAND THE THERAPEUTIC WINDOW (MINIMAL AMOUNT OF FRATAXIN NEEDED FOR A THERAPEUTIC BENEFIT AND THRESHOLD FOR MAXIMUM AMOUNTS OR TOXIC AMOUNTS OF FRATAXIN IN THE CELL. FORM 990, PART III, LINE 4A OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA CAN PROVIDE INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. A COMPLETE LIST OF 2022 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT/GRANT-AWARDS A COMPLETE LIST OF 2022 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/RESEARCH/FARA-FUNDED-RESEARCH FORM 990, PART VI, SECTION B, LINE 11B COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C ALL NEW AND EXISTING BOARD MEMBERS ARE REQUIRED TO ANNUALLY REVIEW AND SIGN A CONFLICT OF INTEREST POLICY AND REPORT DISCLOSURES. FORM 990, PART VI, SECTION B, LINE 15 EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT, CEO, CSO AND DIRECTOR FINANCE ADMINISTRATION. FORM 990, PART VI, SECTION C, LINE 19 FORM 990 IS AVAILABLE ON THE ORGANIZATION'S WEBSITE AS WELL AS GUIDESTAR.ORG AND CHARITYNAVIGATOR.ORG FINANCIAL STATEMENTS ARE AVAILABLE ON THE ORGANIZATION'S WEBSITE. THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FORM 1023 ARE AVAILABLE UPON REQUEST. FORM 990, PART XI, LINE 9: PRIOR YEAR GRANT REFUNDS INCLUDED IN SUPPORT ON FINANCIAL STATEMENTS 74,430. FORM 990, PART XII, LINE 2C FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS PRIOR TO SHARING WITH THE FULL BOARD FOR A VOTE. ALL 990 INFORMATION IS VERIFIED FOR ACCURACY AND COMPLETENESS BY FARA'S DIRECTOR OF FINANCE, FARA'S VP OF FUNDRAISING AND COMMUNICATIONS AND FARA'S CEO. THE VERIFIED DRAFT IS REVIEWED BY THE FARA FINANCE COMMITTEE AND SUBMITTED TO THE FULL FARA BOARD FOR REVIEW AND APPROVAL PRIOR TO FILING.