2025-10-16T15:35:31-05:00 2024-12-31 871353108 EISNER ADVISORY GROUP LLC 130 NORTH 18TH STREET SUITE 3000 PHILADELPHIA PA 191032757 990 2024-01-01 522122720 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE FRIE 4848796160 PO BOX 1537 SPRINGFIELD VA 22151 JENNIFER FARMER CHIEF EXECUTIVE OFFICER 4848796160 2025-10-15 1 0 HELEN M MARTIN P01330899 2158818800 2024 2025-03-06 01:10:19Z JENNIFER FARMER 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 14956926 0 X WWW.CUREFA.ORG X 1998 VA TO TREAT AND CURE FRIEDREICH'S ATAXIA (FA) BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. 19 17 19 500 0 0 12011078 13517065 0 0 35631 172331 -843666 -553970 11203043 13135426 9307077 10467810 0 0 1461477 1572657 0 0 368460 1432219 1236769 12200773 13277236 -997730 -141810 7752276 6946549 1605648 676182 6146628 6270367 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 10330478 9606747 RESEARCH AND GRANT PROGRAM - SEE SCHEDULE O 1354745 781063 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 (CONTINUED IN SCHEDULE O)CLINICAL RESEARCH INFRASTRUCTURE (CONT'D):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. FA GLOBAL CLINICAL CONSORTIUM: FARA AND THE FA COMMUNITY'S DEDICATION TO COLLECTING NATURAL HISTORY STUDY DATA OVER THE PAST TWO DECADES PROVED INSTRUMENTAL IN THE APPROVAL OF THE FIRST-EVER TREATMENT FOR FA. THROUGH THE FA GLOBAL CLINICAL CONSORTIUM (FA GCC), FARA HAS REDOUBLED ITS INVESTMENT IN NATURAL HISTORY DATA BY ENABLING THE TRANSITION TO AN INDUSTRY-LEADING DATA COLLECTION PLATFORM AND A UNIFIED GLOBAL NATURAL HISTORY PROTOCOL (UNIFAI) RESULTING FROM THE HARMONIZATION OF TWO WELL-ESTABLISHED NATURAL HISTORY STUDIES, THE FA CLINICAL OUTCOME MEASURES STUDY (FA-COMS) AND THE EUROPEAN FRIEDREICH'S ATAXIA CONSORTIUM FOR TRANSLATIONAL STUDIES (EFACTS). THE FA GCC AND THE UNIFAI STUDY HAVE BEEN EXPANDED TO MAKE PATIENT CONTRIBUTIONS TO NATURAL HISTORY EVEN MORE POWERFUL IN UNDERSTANDING FA, EVALUATING THE IMPACT OF TREATMENT OPTIONS FOR FA, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. AT EACH UNIFAI STUDY VISIT THERE ARE MORE THAN 1400 DATA ELEMENTS RECORDED. OVER THE LAST TWO YEARS, THE FA GCC HAD ACTIVE PARTICIPATION FROM 54 INVESTIGATORS FROM 33 SITES REPRESENTING 18 COUNTRIES ALONG WITH REPRESENTATIVES FROM PATIENT ADVOCACY AND RESEARCH ORGANIZATIONS. FA GCC RESEARCH ACTIVITIES: THE FA GCC LEADERSHIP IDENTIFIED INITIAL SCIENTIFIC PRIORITIES AND CREATED WORKGROUPS TO ADDRESS THESE PRIORITIES. THE FOLLOWING WORK GROUPS, EACH MADE UP OF 5-10 CONSORTIUM MEMBERS, MET REGULARLY TO ADDRESS GAPS IN CURRENT FA RESEARCH: CARDIAC NATURAL HISTORY, LATE-STAGE SYMPTOMS, PEDIATRIC / PRESYMPTOMATIC, BIO-SAMPLES, MOOD AND COGNITION, AND PATIENT ADVOCACY/ADVISORY TEAM. QUARTERLY FULL GROUP MEETINGS SERVE AS A PLATFORM FOR INVESTIGATORS TO ESTABLISH COMMON RESEARCH INTERESTS, FORM COLLABORATIONS, AND SHARE THEIR GLOBAL EXPERIENCES WITH OMAVELOXOLONE. IMPACT AND FUTURE DIRECTION: THE CONSORTIUM HAS A LONG-TERM OBJECTIVE OF FOSTERING MULTILATERAL RESEARCH AND COLLABORATION ACROSS CONTINENTS, UNIFYING GLOBAL OPINIONS TO REGULATORS AND INDUSTRY PARTNERS, ACCELERATING THE DEVELOPMENT OF NEW THERAPIES, AND IMPROVING OUTCOMES FOR THOSE LIVING WITH FA. ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2024 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG 491179 80000 AWARENESS, EDUCATION, AND OUTREACH PROGRAMS:AWARENESS: FRIEDREICH 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 CONDUCTS AN ANNUAL A SOCIAL MEDIA CAMPAIGN THAT ENCOURAGES COMMUNITY PARTICIPATION LEADING UP TO FA AWARENESS DAY. ADVOCACY: FARA AND THE NATIONAL ATAXIA FOUNDATION (NAF) PARTNERED ON SEVERAL ADVOCACY INITIATIVES RELEVANT TO THE ATAXIA COMMUNITY. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN THE CONTINUED INCLUSION OF HEREDITARY ATAXIA AS PART OF (CONTINUED IN SCHEDULE O)ADVOCACY: (CONT'D)THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 24, RESULTING IN FOUR HEREDITARY ATAXIA RESEARCH GRANTS BEING RECOMMENDED FOR FUNDING TOTALING OVER $12 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2024 NATIONAL ATAXIA AWARENESS DAY AND HOSTING THE SIXTH UNITED AGAINST ATAXIA HILL DAY- WITH 94 CONGRESSIONAL MEETINGS FEATURING THE PARTICIPATION OF 113 FARA AND NAF ADVOCATES FROM 32 STATES. EDUCATION: IN AN ONGOING EFFORT TO SHARE INFORMATION AND EDUCATION, FARA LAUNCHED A NEW WEBSITE IN 2024. THE SITE REDESIGN PRIORITIZED THE USER EXPERIENCE FOR KEY STAKEHOLDERS INCLUDING PATIENT FAMILIES, RESEARCHERS, AND DONORS. THE NEW SITE COINTAINS UP-TO-DATE INFORMATION ON FA RESEARCH INCLUDING GRANTS FUNDED BY FARA, TREATMENT APPROACHES AND PROGRAMS IN THE DRUG DEVELOPMENT PIPELINE, RESEARCH RESOURCES, AND CLINICAL TRIAL OPPORTUNITIES. IT ALSO OFFERS GUIDANCE FOR FAMILIES NAVIGATING FA AND OPPORTUNITIES TO CONNECT WITH OTHERS AND GET INVOLVED.ENGAGING WITH STAKEHOLDERS: AS EXPERTS IN LIVING WITH FA, INDIVIDUALS AND FAMILIES SHARED THEIR STORIES IN MANY FORUMS AND TO MANY AUDIENCES. IN 2024, OVER 50 INDIVIDUALS FROM THE FA COMMUNITY WORKED WITH FARA TO ENGAGE WITH PHARMACEUTICAL PARTNERS, RESEARCHERS, FUTURE HEALTHCARE PROFESSIONALS, MEDICAID COMMITTEES, AND THE FOOD AND DRUG ADMINISTRATION AT 33 DIFFERENT EVENTS. THEIR VOICES PROVIDE ESSENTIAL INSIGHTS THAT ADVANCE MEANINGFUL AND ACCESSIBLE TREATMENTS. CULTIVATING COMMUNITY: THROUGHOUT 2024, FARA WORKED TO STRENGTHEN THE FA COMMUNITY BY FACILITATING OPPORTUNITIES FOR CONNECTION AND COLLABORATION THROUGH VIRTUAL AND IN-PERSON EVENTS. INDIVIDUALS NEW TO THE FA COMMUNITY HAD THE OPPORTUNITY TO MEET OTHER FA FAMILIES FOR THE FIRST TIME. THE FARA AMBASSADOR PROGRAM, A GROUP OF ADULTS WITH FA WHO VOLUNTEER TO SUPPORT FARA'S MISSION, GREW TO 100 MEMBERS FROM COUNTRIES AROUND THE WORLD. AMBASSADORS NOW REPRESENT 14 COUNTRIES GLOBALLY PLUS 32 STATES THROUGHOUT THE US.TO HELP FURTHER FARA'S AWARENESS AND OUTREACH INITIATIVES, FARA ALSO FUNDED A GRANT FOR THE CREATION OF A DOCUMENTARY FILM ABOUT HOW THE FA COMMUNITY UNITES TO ADVANCE RESEARCH. THE FILM, UNDER THE WORKING TILE "THE HIGHEST ROAD," FOCUSES ON THE FA COMMUNITY'S ROLE IN HELPING TO GET THE FIRST DRUG APPROVED FOR FA A STORY THAT IS TOLD IN PARALLEL WITH COMMUNITY MEMBERS ATTEMPTING TO CYCLE UP THE HIGHEST PAVED ROAD IN INDIA. THE FILM IS CURRENTLY IS POST PRODUCTION WITH THE AIM TO BE SHOWN IN FILM FESTIVALS IN 2026. 357617 WORKSHOPS, SYMPOSIA, & CONFERENCESINTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN NOVEMBER 2024, THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) BROUGHT TOGETHER OVER 600 RESEARCHERS FROM AROUND THE WORLD. IT WAS THE LARGEST ICAR TO DATE AND A POWERFUL EXAMPLE OF HOW WE ACCELERATE PROGRESS WHEN EXPERTS ACROSS DIFFERENT TYPES OF ATAXIA COME TOGETHER TO SHARE IDEAS AND COLLABORATE. FARA WAS HONORED TO CO-HOST THE MEETING ALONG WITH ATAXIA UK, NATIONAL ATAXIA FOUNDATION, AND THE ATAXIA GLOBAL INITIATIVE.THIS YEAR'S PROGRAM INCLUDED A MIX OF PLENARY SESSIONS, BREAKOUT WORKSHOPS, AND SCIENTIFIC DEBATE. THE DEBATE SPARKED THOUGHTFUL DISCUSSION ABOUT THE STRENGTHS OF IN VIVO VS. IN VITRO RESEARCH MODELS AND HIGHLIGHTED HOW BOTH APPROACHES HELP TO MOVE THE SCIENCE FORWARD.SOME INSIGHTS AND LEARNINGS FROM ICAR 2024 INCLUDED: 1. DISCOVERING THAT FRATAXIN ACTIVITY CAN BE BOOSTED BY TARGETING OTHER COMPONENTS OF THE IRON-SULFUR CLUSTER ASSEMBLY REVEALS A POTENTIAL NEW TREATMENT PATHWAY. 2. SOME GAA REPEAT INTERRUPTIONS ARE MORE COMMON THAN PREVIOUSLY KNOWN, IMPACTING CARRIER DETECTION AND OPENING NEW THERAPEUTIC OPPORTUNITIES. 3. INFLAMMATION MIGHT CONTRIBUTE TO NERVE DAMAGE IN FA. 4.CAPSID FOR AN IV GENE ADDITION THERAPY REACHED KEY BRAIN AND HEART AREAS IN ANIMAL MODELS 5. MULTIPLE THERAPIES ACROSS DIFFERENT MECHANISMS OF ACTION ARE SHOWING EARLY PROMISE.FARA ALSO HOSTED FIVE RESEARCH RECEPTIONS AND SYMPOSIUMS TO SHARE INFORMATION ABOUT THE FA DRUG DEVELOPMENT PIPELINE, ONGOING CLINICAL TRIALS, CLINICAL MANAGEMENT, AND FARA RESOURCES. VIRTUAL EDUCATION SESSIONS INCLUDED FLASH TALKS WITH FARA-FUNDED RESEARCHERS, COMMUNITY CONVERSATION WEBINARS WITH FARA LEADERSHIP, AND INFORMATION SESSIONS WITH PHARMACEUTICAL PARTNERS. 357617 12534019 1 1 0 1 0 0 0 0 0 0 0 1 0 0 1 1 0 1 0 1 1 1 1 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 19 0 1 19 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 19 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 JENNIFER FARMER 4848796160 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 RONALD BARTEK PRESIDENT/DIRECTOR 40.00 X X 110000 0 3811 RUTH ACTON TREASURER/DIRECTOR FINANCE 25.00 X X 51000 0 16964 PAUL AVERY CHAIRMAN/ DIRECTOR 10.00 X X 0 0 0 MAUREEN JUIP 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 WARREN HUFF 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 165000 0 5678 BARBARA A TATE CHIEF SCIENTIFIC OFFICER 40.00 X 250000 0 5527 ELISABETTA SORAGNI DIRECTOR OF RESEARCH 40.00 X 115851 0 16023 FELICIA DEROSA VP FUNDRAISING & COMMS 40.00 X 106351 0 12292 798202 0 60295 5 0 1 0 CAMENE BVBA-MYRIAM ABOUAZAR-RAI BRUSSELBAAN 473 SINTPIETERSLEEUW FLEMISH BRABANT BE 1600 INTERNATIONAL RESEARCH AND ADVOCACY CONS 132135 1 7072 3362180 10147813 881511 13517065 145621 145621 645455 618745 26710 26710 26710 648785 3362180 1202755 -553970 -553970 13135426 0 0 -381639 7117301 7117301 13350 13350 3337159 3337159 352453 235494 77129 39830 1005136 743605 145566 115965 22699 17493 3331 1875 94846 79156 5460 10230 97523 72766 15658 9099 28777 28777 7550 7550 487223 383230 10373 93620 16786 1995 5023 9768 47789 32849 8264 6676 250194 198384 47520 4290 15021 2486 9213 3322 SUBSCRIPTIONS & LICENSI 306389 280541 0 25848 CREDIT CARD & BANK FEES 27790 213 397 27180 FACILITIES & EQUIPMENT 15239 1000 14239 0 PRINTING AND COPYING 13354 4091 1125 8138 20657 5356 2682 12619 13277236 12534019 374757 368460 3076159 1776063 1880952 2220120 766590 693221 49155 67503 1870166 1705100 432680 5458 5458 103796 46404 7752276 6946549 1489034 615612 4567 10630 112047 49940 1605648 676182 X 5182849 3919967 963779 2350400 6146628 6270367 7752276 6946549 X -141810 173831 91718 X X 0 1 X 1 0 X 12628384 7808772 11604349 12011078 13517065 57569648 12628384 7808772 11604349 12011078 13517065 57569648 16878960 40690688 38997 47170 65540 130614 145621 427942 57997590 0.70160 0.74780 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 3586 11586 15172 12827374 12842546 792127 198032 0 0 629867 742201 757339 792127 2921534 4382301 19687 20584 20400 15172 75843 157467 185550 189335 198032 730384 1095576 3570 3567 3700 3586 14423 0 ISHARES CORE S&P 500 EFT 432680 F 432680 LEASE LIABILITIES, CURRENT PORTION 49940 49940 X 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. FARA EUROPE WAS FORMED AS A NON-PROFIT ENTITY UNDER THE LAWS OF THE NETHERLANDS AND IS EXEMPT FROM INCOME TAXES. 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 THE ORGANIZATION, AND HAS CONCLUDED THAT AS OF DECEMBER 31, 2024, 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. THE ORGANIZATION RECOGNIZES ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY. THERE WERE NO INCOME TAX RELATED INTEREST OR PENALTIES RECORDED FOR THE YEAR ENDED DECEMBER 31, 2024. 1 EUROPE 0 1 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 1804190 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 970045 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 93500 CANADA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 427972 0 1 0 0 0 1 3295707 0 3295707 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 417769 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 181411 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 30000 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 77800 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 98960 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 7736 WIRE 0 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 156369 WIRE 0 EUROPE MEDICAL RESEARCH 90900 WIRE 0 EUROPE MEDICAL RESEARCH 67850 WIRE 0 EUROPE MEDICAL RESEARCH 42600 WIRE 0 EUROPE MEDICAL RESEARCH 125000 WIRE 0 EUROPE MEDICAL RESEARCH 196928 WIRE 0 EUROPE MEDICAL RESEARCH 80000 WIRE 0 EUROPE MEDICAL RESEARCH 120240 WIRE 0 EUROPE MEDICAL RESEARCH 88777 WIRE 0 EUROPE MEDICAL RESEARCH 104068 WIRE 0 EUROPE MEDICAL RESEARCH 85500 WIRE 0 EUROPE MEDICAL RESEARCH 124923 WIRE 0 EUROPE MEDICAL RESEARCH 130750 WIRE 0 EUROPE MEDICAL RESEARCH 407105 WIRE 0 EUROPE MEDICAL RESEARCH 139548 WIRE 0 NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 7000 WIRE 0 NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 10913 WIRE 0 NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 53600 WIRE 0 NORTH AMERICA - CANADA, MEXICO (NOT UNITED STATES) MEDICAL RESEARCH 356459 WIRE 0 SOUTH AMERICA- ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR MEDICAL RESEARCH 58500 WIRE 0 SOUTH AMERICA- ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR MEDICAL RESEARCH 35000 WIRE 0 25 2 FARA FELLOWS AWARDS EUROPE (INCLUDING ICELAND & GREENLAND) 3 40050 WIRE 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. FARA INSTITUTED A PROGRAM TO SUPPORT YOUNG EMERGING SCIENTISTS (UP TO SIX PER YEAR) WITH THE FARA FELLOWS AWARD. APPLICATIONS ARE SUBMITTED BY THE FELLOWS AND THEIR MENTORS AND ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY THE BOARD. FARA ENERGY BALL 1651351 1153631 497720 144106 10500 416430 RIDEATAXIA PHILA 578416 562366 16050 3206 107521 16 1781198 1646183 135015 16028 504964 4010965 3362180 648785 163340 10500 1028915 1202755 -553970 FELICIA DEROSA 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 1 BOARD REGENTS OF THE UNIVERSITY OF OKLAHOMA FIVE PARTNERS PLACE STE 3100 201 STEPHENSON PARKWAY NORMAN OK 73019 731377584 501(C)(3) 116813 0 MEDICAL RESEARCH BOSTON COLLEGE 140 COMMONWEALTH AVE CHESTNUT HILL MA 02467 042103545 501(C)(3) 38000 0 MEDICAL RESEARCH CALIFORNIA INSTITUTE OF TECHNOLOGY 1200 EAST CALIFORNIA BLVD PASADENA CA 91125 951643307 501(C)(3) 100000 0 MEDICAL RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA RESEARCH INSTITUTE 34TH ST CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 713919 0 MEDICAL RESEARCH COLUMBIA UNIVERSITY 615 W 131ST STREET 6TH FLOOR MC8725 NEW YORK NY 10027 135598093 501(C)(3) 125000 0 MEDICAL RESEARCH EMORY UNIVERSITY 1390 OXFORD ROAD NE 3RD FLOOR ATLANTA GA 30322 580566256 501(C)(3) 5991 0 MEDICAL RESEARCH EPICRISPR BIOTECHNOLOGIES INC 7000 SHORELINE COURT SUITE 100 SOUTH SAN FRANCISCO CA 94080 824177431 100000 0 MEDICAL RESEARCH JOHN HOPKINS UNIVERSITY 733 N BROADWAY SUITE 117 BALTIMORE MD 21205 520595110 501(C)(3) 86175 0 MEDICAL RESEARCH MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 043230035 501(C)(3) 313988 0 MEDICAL RESEARCH NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DR COLUMBUS OH 43205 311036372 501(C)(3) 9012 0 MEDICAL RESEARCH REGENTS OF THE UNIVERSITY OF MINNESOTA 600 MCNAMARA ALUMNI CENTER SE 200 SE OAK ST MINNEAPOLIS MN 55455 416007513 501(C)(3) 339615 0 MEDICAL RESEARCH RGENTA THERAPEUTICS INC 300 TRADECENTER DR SUITE 6600 WOBURNMA MA 01801 237094113 125000 0 MEDICAL RESEARCH ST JUDE CHILDREN'S RESEARCH HOSPITAL 262 DANNY THOMAS PLACE MEMPHIS TN 38105 620646012 501(C)(3) 67138 0 MEDICAL RESEARCH STANFORD UNIVERSITY 450 JANE STANFORD WAY STANFORD CA 94305 941156365 501(C)(3) 250000 0 MEDICAL RESEARCH STEALTH BIOTHERAPEUTICS INC 123 HIGHLAND AVE STE 201 NEEDHAM MA 02494 261512085 185182 0 MEDICAL RESEARCH THE BROAD INSTITUTE 415 MAIN STREET CAMBRIDGE MA 02142 263428781 501(C)(3) 1945086 0 MEDICAL RESEARCH THE HIGHEST ROAD FILM LLC 1023 PHEASANT RIDGE DRIVE GRAPEVINE TX 76051 992207841 80000 0 DISEASE AWARENESS THE NATIONAL CANCER INSTITUTE BUILDING 31 ROOM 11A-16 9000 ROCKVILLE PIKE BETHESDA MD 20892 015208581 501(C)(3) 124922 0 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVE DAVIS CA 95616 946036494 501(C)(3) 150000 0 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 194830 0 MEDICAL RESEARCH THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 746000089 501(C)(3) 74768 0 MEDICAL RESEARCH THE WINIFRED MASTERSON BURKE MEDICAL RESEARCH INSTITUTE 785 MAMARONECK AVENUE WHITE PLAINS NY 10605 133434924 501(C)(3) 61572 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) 45145 0 MEDICAL RESEARCH UNIVERSITY OF COLORADO 1800 GRANT STREET DENVER CO 80203 846000555 501(C)(3) 5483 0 MEDICAL RESEARCH UNIVERSITY OF FLORIDA DEPT OF NEUROLOGY L3-100 MCKNIGHT BRAIN INSTITUTE NEWELL DRIVE GAINESVILLE FL 32611 596002052 501(C)(3) 359182 0 MEDICAL RESEARCH UNIVERSITY OF MASSACHUSETTS 100 MORRISSEY BLVD BOSTON MA 02125 043167352 501(C)(3) 300000 0 MEDICAL RESEARCH UNIVERSITY OF ROCHESTER 515 HYLAN BUILDING RC BOX 270140 ROCHESTER NY 14627 160743209 501(C)(3) 100000 0 MEDICAL RESEARCH UPLIFTING ATHLETES PO BOX 574 8 ATKINSON DRIVE DOYLESTOWN PA 18901 341986485 501(C)(3) 10000 0 MEDICAL RESEARCH USF FOUNDATION 4202 E FOWLER AVE ALC100 TAMPA FL 33620 590879015 501(C)(3) 100000 0 MEDICAL RESEARCH VESIGEN INC 790 MEMORIAL DRIVE SUITE 103 CAMBRIDGE MA 02139 842449757 204136 0 MEDICAL RESEARCH WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 1300 YORK AVENUE C-118 NEW YORK NY 10065 131623978 501(C)(3) 274855 0 MEDICAL RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION 34TH ST CIVIC CENTER BLVD PHILADELPHIA PA 19104 232237932 501(C)(3) 500000 0 MEDICAL RESEARCH 27 5 FARA FELLOWS AWARD 1 13350 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. FARA INSTITUTED A PROGRAM TO SUPPORT YOUNG EMERGING SCIENTISTS (UP TO SIX PER YEAR) WITH THE FARA FELLOWS AWARD. APPLICATIONS ARE SUBMITTED BY THE FELLOWS AND THEIR MENTORS AND ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY THE BOARD. X X 0 0 0 0 0 0 0 0 0 BARBARA A TATE CHIEF SCIENTIFIC OFFICER 250000 0 0 0 0 0 4833 0 694 0 255527 0 0 0 JENNIFER M FARMER CHIEF EXECUTIVE OFFICER 165000 0 0 0 0 0 4950 0 728 0 170678 0 0 0 X 12 460344 HI-LOW DATE OF GIFT X AUCTION ITEMS 495 421167 FAIR MARKET VALUE 0 1 0 PART I, COLUMN (B): FOR LINE 9, THE ORGANIZATION RECOGNIZES IN COLUMN B EACH UNIQUE STOCK CONTRIBUTION RECEIVED FROM A DONOR. FOR LINE 25, THE COUNT OF AUCTION ITEMS REPRESENTS EACH INDIVIDUAL CONTRIBUTION 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 2024, FARA AWARDED $10+ MILLION IN RESEARCH FUNDING. THIS INCLUDED 46 GRANT PROJECTS THROUGH FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM, INSTITUTIONAL BASED RESEARCH, AND FARA DIRECTED PROJECTS. IT ALSO INCLUDED FUNDING A PATIENT REGISTRY AND LONGITUDINAL NATURAL HISTORY THROUGH THE FA GLOBAL CLINICAL CONSORTIUM AND SUPPORT FOR COMMUNITY AWARENESS WHICH ARE DESCRIBED IN THE SECOND AND THIRD PROGRAM SECTIONS BELOW. FARA GRANT PROGRAM: FARA'S INVESTIGATOR-INITIATED GRANT PROGRAM AWARDED TWENTY-SIX NEW GRANTS AND APPROVED CONTINUED FUNDING FOR TWENTY GRANTS. RESEARCHERS ON FIVE CONTINENTS ARE RECEIVING RESEARCH FUNDING FROM FARA. THE PROGRAM IS A COMPETITIVE FUNDING MECHANISM THAT SUPPORTS RESEARCH TO FURTHER THE UNDERSTANDING OF FA AND PROMOTE THERAPEUTIC DISCOVERY AND DEVELOPMENT. FARA PRIORITIZES FUNDING PROJECTS THAT FILL GAPS IN KNOWLEDGE OF DISEASE MECHANISMS, SUPPORT EARLY DEVELOPMENT OF THERAPEUTIC INTERVENTIONS, ESTABLISH AND ADVANCE THE DEVELOPMENT OF TOOLS FOR DRUG DEVELOPERS AND ACADEMIC RESEARCHERS, AND FOCUS ON CLINICAL RESEARCH AND TRIALS. 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. WITH FARA'S GOAL IN MIND OF INSPIRING AND SUPPORTING JUNIOR INVESTIGATORS AND BUILDING THE NEXT GENERATIONS OF FA SCIENTISTS, IN 2024, FARA AWARDED GRANTS TO 11 JUNIOR INVESTIGATORS. FARA HAS ALSO 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 CAN 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 CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA) AND THE FA ACCELERATOR PROGRAM AT 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 CHILDREN'S HOSPITAL OF PHILADELPHIA/ PENN MEDICINE (UNIVERSITY OF PENNSYLVANIA), 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. CLEMENTINA MESAROS- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH, AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY. THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER, AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. FOR EXAMPLE, 95% OF INDIVIDUALS WITH FA HAVE THE SAME GENE MUTATION, A GAA REPEAT EXPANSION, HOWEVER, 5% OF INDIVIDUALS HAVE NON-GAA REPEAT MUTATIONS. COE CLINICIANS OBSERVED THAT INDIVIDUALS WITH CERTAIN NON-GAA MUTATIONS HAVE DIFFERENT CLINICAL SYMPTOMS AND DISEASE PROGRESSION (BOTH MORE AND LESS SEVERE). THESE CLINICAL OBSERVATIONS SPARKED LAB-BASED STUDIES INTO HOW SPECIFIC MISSENSE MUTATIONS MAY AFFECT FRATAXIN'S FUNCTION BEYOND ITS WELL-KNOWN ROLE IN IRON-SULFUR CLUSTER SYNTHESIS. THIS WORK EXPLORES WHETHER FRATAXIN MAY HAVE ADDITIONAL CELLULAR ACTIVITIES, OFFERING BOTH A NEW LENS THROUGH WHICH TO UNDERSTAND DISEASE VARIABILITY AND THE EXPLORATION OF NEW THERAPEUTIC TARGETS. 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. 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 DR. VAMSI MOOTHA, THE FAA'S OVERARCHING GOAL IS TO NUCLEATE A RESEARCH COMMUNITY THAT LEVERAGES THE LATEST ADVANCES IN BIOMEDICAL RESEARCH TO DEVELOP NEW THERAPEUTIC STRATEGIES. DR. DAVID LIU HAS BEEN INVESTIGATING THERAPEUTIC APPROACHES THAT WOULD EDIT THE FRATAXIN GENE, WITH THE GOAL OF REMOVING THE GAA REPEATS (PRIME EDITING) OR INTERRUPTING THE GAA REPEATS (BASE EDITING) AND THUS REACTIVATING THE PROTEIN EXPRESSION. DR. GARY RUVKUN (A 2024 NOBEL LAUREATE) IS WORKING TO DISCOVER PROTEINS THAT INTERACT WITH FRATAXIN. DRS. JONATHAN AND CHRISTINE SEIDMAN ARE DISCOVERING CHANGES IN THE HEARTS OF PEOPLE WITH FA, INCLUDING AN INCREASE IN INFLAMMATION. THIS WORK IS FUNDED BY FARA, IN COLLABORATION WITH THE CUREFA FOUNDATION AND ENDFA. IT DEEPENS OUR KNOWLEDGE OF FA, AND THESE LEARNINGS WERE SHARED BY FOUR MEMBERS OF THE FAA WHO PRESENTED THEIR WORK AT THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) IN NOVEMBER IN LONDON. FARA DIRECTED RESEARCH: IN 2024, 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, A NATURAL HISTORY STUDY DESIGNED TO TRACK THE CHANGES IN THE BRAIN AND THE SPINAL CORD IN FA. STUDY PROGRESS IN 2024 AT THE PARTICIPATING CLINICAL SITES IN USA, BRAZIL, CANADA, GERMANY, AND AUSTRALIA OF THE 279 PARTICIPANTS ENROLLED IN THE STUDY, 100% HAD COMPLETED THEIR BASELINE AND 12-MONTH VISITS, AND MORE THAN HALF HAD COMPLETED THEIR FINAL VISITS. THIS REMARKABLE PROGRESS KEEPS THE STUDY ON TRACK TO FINALIZE DATA COLLECTION OF NEUROIMAGING OF THE BRAIN AND SPINAL, ALONG WITH CLINICAL OUTCOMES AND BLOOD BIOMARKERS, IN 2025. 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. DEVELOPMENT AND VALIDATION OF A POTENCY ASSAY FOR USE IN THE DEVELOPMENT OF GENE AND PROTEIN REPLACEMENT THERAPIES. 5. LEADING WORK TO CREATE A NEW DISEASE MODEL FOR PRE-CLINICAL RESEARCH, AN FA RAT MODEL. 6. 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. 7. ONGOING MAINTENANCE OF CLINICAL MANAGEMENT GUIDELINES IN FA FOR REFERENCE USE BY PHYSICIANS AND PATIENTS (PUBLISHED IN 2022): FRDAGUIDELINES.ORG 8. RETROSPECTIVE CARDIAC NATURAL HISTORY STUDY-THIS PROJECT RE-ANALYZES EXISTING ECHOCARDIOGRAMS TO QUICKLY ASSESS THE VALUE OF THESE DATA IN UNDERSTANDING AND PREDICTING THE PROGRESSION OF HEART DISEASE IN FA. 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. 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 91,718. FORM 990, PART XII, LINE 2C FARA'S AUDIT COMMITTEE CONSISTS OF THE FINANCE COMMITTEE, CEO AND ONE AT-LARGE BOARD MEMBER. EACH YEAR THE AUDIT COMMITTEE SEEKS THE SERVICES OF AN OUTSIDE ACCOUNTING FIRM AND CONTRACTS FOR A FULL AUDIT, PREPARATION OF FINANCIAL STATEMENTS AND FILING OF THE 990. THE AUDIT COMMITTEE IS RESPONSIBLE FOR REVIEWING RECOMMENDATIONS FROM THE AUDIT AND PROPOSING NEW POLICIES AND PROCEDURES AS NECESSARY. THE AUDIT COMMITTEE ALSO PARTICIPATES IN DETAILED REVIEW OF FINANCIAL STATEMENTS AND 990 PRIOR TO SHARING WITH THE FULL BOARD FOR A VOTE. 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. STICHTING FRIEDREICH'S ATAXIA RESEARCH ALLIANCE EUROPE JACHTHAVENWEG 111 KM AMSTERDAM NL RESEARCH NL FRIEDREICH'S ATAXIA RESEARCH ALLIANCE 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0