2019-05-15T09:35:33-05:00 2018-12-31 231518888 MAILLIE LLP 624 WILLOWBROOK LANE WEST CHESTER PA 19382 990 2018-01-01 522122720 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE FRIE 4848796160 PO BOX 1537 SPRINGFIELD VA 22151 JENNIFER FARMER EXECUTIVE DIRECTOR 4848796160 2019-05-14 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 96.227.130.2 2019-05-14 11:23:22 ED P 15A7E9B0F4D4D3BE77214A119BF6377A745EC461 15A7E9B0F4D4D3BE77214A119BF6377A745EC461 2018 2019-02-21 02:37:17Z JENNIFER FARMER 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 8823419 0 X WWW.CUREFA.ORG X 1998 VA TO TREAT AND CURE FRIEDREICH'S ATAXIA BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. 18 16 13 500 0 0 7518776 7662625 0 0 53104 40534 -38343 -99614 7533537 7603545 5824049 6078662 0 0 605722 665841 0 0 109905 382043 305349 6811814 7049852 721723 553693 4852978 5108402 323194 130166 4529784 4978236 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 5626474 5374421 RESEARCH AND GRANT PROGRAMFARA AWARDED A TOTAL AMOUNT OF $6.1 MILLION IN RESEARCH FUNDING IN 2018 - AN 5.2% INCREASE FROM LAST YEAR. INCREASED FUNDRAISING MADE IT POSSIBLE FOR FARA TO AWARD NEW GRANTS ACROSS SEVERAL AREAS OF STRATEGIC IMPORTANCE. DURING 2018, FARA RECEIVED 37 LETTERS OF INTENT (LOIS) AND INVITED 26 INVESTIGATORS TO SUBMIT NEW RESEARCH GRANT APPLICATIONS. FOLLOWING THE PEER-REVIEW PROCESS, 17 WERE AWARDED FUNDING IN THE FOLLOWING STRATEGIC INITIATIVES: DRUG DISCOVERY (4), GENE AND STEM CELL THERAPY (1), MECHANISMS OR PATHWAY OF DISEASE (3), CELL AND ANIMAL MODELS (3), OUTCOME MEASURES AND BIOMARKERS (4), CARDIAC RESEARCH (1) AND CLINICAL RESEARCH FELLOWSHIP (1). THE SUCCESSFUL INVESTIGATORS WERE FROM 8 DIFFERENT COUNTRIES AND 8 OF THEM (3 OF WHOM WERE JUNIOR INVESTIGATORS) HAD NOT PREVIOUSLY SUBMITTED APPLICATIONS TO FARA. CONTINUATION FUNDING FOR A SECOND YEAR WAS GIVEN TO AN ADDITIONAL 18 RESEARCH PROJECTS AND FARA ALSO PROVIDED ONGOING RESEARCH FUNDING FOR THE COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN), THE FA CENTER OF EXCELLENCE, BIOMARKER DEVELOPMENT CONSORTIA AND CLINICAL RESEARCH INFRASTRUCTURE TO FACILITATE CLINICAL TRIALS. ALL OF THESE RESEARCH PROJECTS ADVANCE FA RESEARCH PROVIDING A DEEPENING OUR UNDERSTANDING OF DISEASE MECHANISM, PATHOLOGY, AND PROGRESSION AND DISCOVERY OF INNOVATIVE APPROACHES TO THERAPY. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH OUR FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT.FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA PATHE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT OF $3.25 MILLION (OVER 3 YEARS) TO PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA, PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES. THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. IN ITS FIRST FIVE YEARS, THE COE REACHED SEVERAL SIGNIFICANT RESEARCH MILESTONES WITH THE DISCOVERY OF POSSIBLE TREATMENT CANDIDATES, THE STUDY OF NEW BIOMARKERS TO MEASURE THE DISEASE, AND LAUNCH OF PROMISING NEUROLOGIC AND CARDIAC CLINICAL TRIALS AND STUDIES. IN 2017, THAT COMMITMENT WAS RENEWED FOR AN ADDITIONAL THREE YEARS ($1,403,500 IN 2017, $1,225,500 IN 2018 AND $1,122,000 IN 2019). PROJECTS AND INVESTIGATORS BEING FUNDED INCLUDE DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR, IAN BLAIR- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY.OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA IS PROVIDING INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. A COMPLETE LIST OF 2018 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT-AWARDSA COMPLETE LIST OF 2018 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/SCIENTIFIC-NEWS/FUNDED-RESEARCH 150510 5000 RESEARCH CONFERENCESFARA ORGANIZES AND SUPPORTS A NUMBER OF CONFERENCES TO IMPROVE SHARING OF KNOWLEDGE, INSIGHTS AND ADVANCES AND BUILD COLLABORATIONS AND SYNERGISTIC CONNECTIONS BETWEEN FA RESEARCHERS, INDUSTRY AND GOVERNMENT PARTNERS AND PATIENTS. BIOMARKER MEETINGFARA HELD ITS THIRD BIOMARKER MEETING IN TAMPA FLORIDA ON SEPTEMBER 28TH, 2018. SESSIONS COVERED FRATAXIN AND METABOLIC BIOMARKERS, CARDIAC BIOMARKERS, NEUROLOGICAL BIOMARKERS AND CLINICAL ENDPOINTS. OVER 100 PEOPLE ATTENDED, INCLUDING INVESTIGATORS WITH FARA FUNDED BIOMARKER GRANTS AND INDUSTRY PARTNERS. SIGNIFICANT PROGRESS WAS REPORTED. DATA SHOWED ADVANCES IN TECHNOLOGIES TO MEASURE FRATAXIN, NEW TECHNIQUES FOR LOOKING AT CHANGES IN METABOLISM DUE TO FA, DATA ON NOVEL BIOMARKERS OF PERIPHERAL NEUROPATHY SUCH AS MEISSNER CORPUSCLES AND QUANTITATIVE SENSORY TESTING AND NOVEL FLUID BIOMARKERS SUCH AS NEUROFILAMENT LIGHT. PANELS DISCUSSED THE DATA SUPPORTING DIFFERENT NEUROIMAGING BIOMARKERS, AND WHAT THE MOST PROMISING CARDIAC BIOMARKERS MIGHT BE. FINALLY, DATA ON NOVEL GAIT, BALANCE, DEXTERITY AND SPEECH OUTCOME MEASURES WERE SHARED AND DISCUSSED IN THE CONTEXT OF FUNCTIONAL OUTCOME MEASURES.SYMPOSIUMSFARA CO-ORGANIZED THREE PATIENT SYMPOSIUMS WITH CLINICAL RESEARCH NETWORK SITES IN 2018, UNIVERSITY OF CALIFORNIA- LOS ANGELES (FEBRUARY 23), EMORY UNIVERSITY (APRIL 29) AND CHILDREN'S HOSPITAL OF PHILADELPHIA (OCTOBER 15). THESE SYMPOSIUMS PROVIDE AN OPPORTUNITY TO EDUCATE THE PATIENT/FAMILY COMMUNITY ON RESEARCH ADVANCES, PROGRESS ON CLINICAL TRIALS AND ARE A UNIQUE FORUM FOR PATIENTS AND RESEARCHERS TO ENGAGE AND LEARN FROM EACH OTHER'S EXPERIENCES AND PERSPECTIVES. COMBINED THESE SYMPOSIUMS ACCOMMODATED MORE THAN 400 ATTENDEES. 231493 EDUCATION, AWARENESS & OUTREACH PROGRAMSFA 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 A FACEBOOK LIVE SERIES TO EDUCATE AND INFORM THE COMMUNITY ABOUT THE LATEST DEVELOPMENTS IN FA RESEARCH AND SOME OF THE RESULTS OF FUNDED GRANTS.THE FARA AMBASSADOR PROGRAM WHICH WAS LAUNCHED IN 2011 WITH >20 PARTICIPANTS HAD A YEAR OF CONTINUED GROWTH AND ACTIVITY IN 2018. THE PROGRAM NOW INCLUDES 65 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 2018, FARA FACILITATED FORMAL TRAINING FOR THE AMBASSADOR LEADERSHIP TEAM AND AMBASSADORS. THE FOCUS FOR THE TRAINING WAS THE FA TREATMENT PIPELINE- THE DEVELOPMENT OF APPROACHES TO TREATING FA. THE AMBASSADOR BLOG FEATURED POSTS SUCH AS COMMUNITY EVENT SUMMARIES, MEET THE COMMUNITY INTERVIEWS WITH PEOPLE LIVING WITH FA, AND PATIENT PERSPECTIVES ON PARTICIPATING IN RESEARCH. IN 2018, THEY ACHIEVED >70 POSTS WITH OVER 27,000 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 WEBEX 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). IN 2018, AMBASSADORS VISITED WITH STUDENTS IN NINE GENETIC COUNSELING PROGRAMS ACROSS THE COUNTRY TO DISCUSS LIVING WITH A RARE, GENETIC DISEASE. 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 SYMPOSIUMS. 801223 699241 CLINICAL RESEARCH INFRASTRUCTUREIN 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: FRIEDREICH'S ATAXIA GLOBAL PATIENT REGISTRY: THE ONLY INTERNATIONAL FRIEDREICH ATAXIA PATIENT REGISTRY WITH MORE THAN 3500 INDIVIDUALS ENROLLED. THIS REGISTRY CAPTURES DEMOGRAPHIC AND CLINICAL INFORMATION ON INDIVIDUALS WITH FA AND IS USED TO RECRUIT INDIVIDUALS FOR CLINICAL TRIALS WORLDWIDE. IN 2018, THE PATIENT REGISTRY WAS USED TO RECRUIT FOR 2 CLINICAL TRIALS AND SEVERAL OTHER CLINICAL RESEARCH STUDIES. TO LEARN MORE, VISIT CUREFA.NET/REGISTRY. IN 2018, FARA ENTERED INTO AN AGREEMENT WITH PULSE INFOFRAME FOR THE DEVELOPMENT OF A NEW PATIENT REGISTRY PLATFORM THAT WOULD HAVE EXPANDED RESEARCH AND ANALYTICS CAPABILITIES AND OFFER MULTIPLE LANGUAGES.COLLABORATIVE 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 CUREFA.ORG/NETWORK.HTMLNATURAL HISTORY STUDY: LONGITUDINAL DATA (USUALLY ABOUT 10 YEARS) ON INDIVIDUALS WITH A DISEASE THAT DESCRIBES AND QUANTIFIES THE PROGRESSION OF THE DISEASE ALONG WITH THE SYMPTOMS AND MANIFESTATIONS OF THE DISEASE. NATURAL HISTORY CAN SOMETIMES SERVE AS THE BASIS FROM WHICH MEASUREMENTS CAN BE MADE TO DETERMINE EFFECTS OF NEW TREATMENTS, DRUGS OR INTERVENTIONS.CLINICAL OUTCOME MEASURES : FUNCTIONAL PERFORMANCE TESTS (E.G., TIMED PEGBOARD OR WALK TESTS, VISION, HEARING OR SPEECH TESTS) THAT QUANTIFY HOW MUCH CHANGE TAKES PLACE IN A SPECIFIC AMOUNT OF TIME AND ARE USED IN CLINICAL TRIALS TO MEASURE WHETHER A DRUG IS ALTERING THE COURSE OF THE DISEASE.BIOMARKERS: ANYTHING THAT CAN BE USED AS AN INDICATOR OF A PARTICULAR DISEASE STATE - USUALLY PROTEINS, ENZYMES, GENETIC VARIANTS, IMAGING (MRI, CT OR PET SCANS). BIOMARKERS CAN BE USED TO ASSESS RISK OF DISEASE, DIAGNOSIS, OR OUTCOMES. USE OF BIOMARKERS IN DRUG DEVELOPMENT IS OF GREAT INTEREST BECAUSE BIOMARKERS CAN PROVIDE EVIDENCE OF BIOLOGICAL ACTIVITY, POTENTIALLY DEMONSTRATING THERAPEUTIC BENEFIT MORE QUICKLY THAN TRADITIONAL OUTCOME MEASURES. BIOREPOSITORY: A REPOSITORY OR BANK OF STORED BIOLOGICAL MATERIALS SUCH AS BLOOD SAMPLES, DNA, ORGANS, AND TISSUES (SUCH AS SKIN, MUSCLE, HEART) THAT CAN BE USED FOR RESEARCH.THROUGH THE CCRN IN FA WE HAVE COLLECTED NATURAL HISTORY DATA (ONGOING) IN MORE THAN 1,000 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 NEARLY $700,000 IN 2018 TO CLINICAL RESEARCH INFRASTRUCTURE IN DIRECT FUNDING TO THE CCRN IN FA CENTERS AND RELATED CLINICAL RESEARCH ACTIVITIES.CRITICAL PATH INSTITUTE DATA COLLABORATION PROJECTIN 2017, FARA INITIATED A PROJECT WITH CRITICAL PATH INSTITUTE'S (C-PATH) DATA COLLABORATION CENTER (DCC) TO DEVELOP AN AGGREGATED DATABASE OF CLINICAL DATA FOR FA. USE OF THIS DATABASE WILL PROMOTE COLLABORATIVE RESEARCH TO SUPPORT THE UNDERSTANDING OF NATURAL HISTORY, POTENTIAL BIOMARKERS, AND POTENTIAL CLINICAL ENDPOINTS FOR PATIENTS WITH FA, WHICH WILL HELP RESEARCHERS DEVELOP MORE EFFICIENT CLINICAL TRIAL PROTOCOLS TO TEST NEW THERAPIES MORE QUICKLY AND EFFECTIVELY. IN 2018, THE PROJECT ESTABLISHED AN INTEGRATED DATABASE OF CLINICAL DATA FOR FA THAT CAN BE SHARED AND UTILIZED BY EXISTING FA RESEARCHERS. IT ENLISTED COMPANIES THAT HAVE CARRIED OUT CLINICAL TRIALS IN FA TO OBTAIN CONTRIBUTIONS OF CLINICAL DATA, AS WELL AS SHARING NATURAL HISTORY DATA COLLECTED BY FARA'S COLLABORATIVE CLINICAL RESEARCH NETWORK.THREE DE-IDENTIFIED DATASETS FROM PREVIOUS CLINICAL TRIALS AND FOUR FA-CLINICAL OUTCOME MEASURE DATASETS HAVE BEEN AGGREGATED INTO A SINGLE DATABASE IN A SCIENTIFICALLY RIGOROUS MANNER BY C-PATH'S DCC.ADDITIONAL INFORMATION ABOUT FARA'S PROGRAMS IN 2018 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG/FINANCIALS 801223 699241 6809700 1 1 0 1 0 0 0 0 0 0 1 0 1 0 0 0 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 1 3 0 1 13 1 0 0 0 0 0 1 1 1 1 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 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 ACTON TREASURER 25.00 X X 10000 0 0 JENNIFER GOOD DIRECTOR 0.00 X 0 0 0 PAUL AVERY CHAIRMAN 0.00 X X 0 0 0 DR HOLLY HEDRICK DIRECTOR 0.00 X 0 0 0 GEOFFREY LEVITT DIRECTOR 0.00 X 0 0 0 DR STEVE KLASKO 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 DEREK G HENNECKE DIRECTOR 0.00 X 0 0 0 DR JAMES MCARTHUR SCIENTIFIC 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 100000 0 3172 BRIGID BRENNAN DIRECTOR 0.00 X 0 0 0 DR JAMES R RUSCHE DIRECTOR 0.00 X 0 0 0 JENNIFER FARMER EXECUTIVE DIRECTOR 40.00 X 130000 0 4109 240000 0 7281 1 0 0 0 0 25510 4365045 3272070 6944 7662625 42296 42296 342637 344399 -1762 -1762 -1762 775861 4365045 875475 -99614 -99614 7603545 0 0 -59080 4675310 4675310 1403352 1403352 256880 199506 33440 23934 408961 330078 28734 50149 13200 13200 14069 14069 43286 33750 3536 6000 1426 1406 20 15007 4683 6471 3853 28025 16014 4004 8007 88788 80598 8180 10 54576 44398 10178 500 500 2816 2816 BOOKS, SUBSCRIPTIONS & 17557 9125 1707 6725 MISCELLANEOUS 6940 5047 1838 55 BUSINESS REGISTRATION F 6481 517 5964 CREDIT CARD & BANK FEES 6347 948 211 5188 6331 5485 846 7049852 6809700 130247 109905 1459689 2162521 230051 0 358567 195821 8402 37323 7135 6629 1006 506 1703763 1620731 1091500 1091500 4852978 5108402 323194 130166 323194 130166 X 4208302 4914855 321482 63381 4529784 4978236 4852978 5108402 X 553693 -97572 -7669 X X 0 1 X 1 0 X 5572073 5701123 5388847 7518776 7662625 31843444 5572073 5701123 5388847 7518776 7662625 31843444 3335773 28507671 14051 19755 29213 37283 42296 142598 31986042 0.89130 0.87750 X 0 0 5326 3599 8925 6625747 6634672 481734 120434 0 0 458529 465526 531374 481734 1937163 2905745 8106 6200 6500 8925 29731 114632 116382 132844 120434 484292 726438 4731 3700 3879 5326 17636 7135 6629 506 506 INVESTMENT IN BIOELECTRON TECHNOLOGY CORPORATION 1091500 C 1091500 8359710 -97572 875475 777903 7581807 21738 21738 7603545 7911258 875475 875475 7035783 14069 14069 7049852 PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE PART XI, LINE 4B - OTHER ADJUSTMENTS: INVESTMENT MANAGEMENT FEES MISC. DONATED ITEMS MISC REVENUE PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE PART XII, LINE 4B - OTHER ADJUSTMENTS: INVESTMENT MANAGEMENT FEES 1 EUROPE GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 977755 EAST ASIA AND THE PACIFIC GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 373747 SOUTH AMERICA GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 51850 0 0 0 0 0 0 1403352 0 1403352 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 164129 WIRE EUROPE MEDICAL RESEARCH 57602 WIRE EUROPE MEDICAL RESEARCH 140277 WIRE EUROPE MEDICAL RESEARCH 250000 WIRE SOUTH AMERICA - ARGENTINA, BOLIVIA, BRAZIL, CHILE, COLUMBIA, ECUADOR, MEDICAL RESEARCH 51850 WIRE EUROPE MEDICAL RESEARCH 98500 WIRE EUROPE MEDICAL RESEARCH 27500 WIRE EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, MEDICAL RESEARCH 117822 WIRE EUROPE MEDICAL RESEARCH 178903 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 91796 WIRE EUROPE MEDICAL RESEARCH 75000 EUROPE MEDICAL RESEARCH 149973 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 ENERGY BALL 2369232 1886949 482283 382651 RIDE ATAXIA PHILADELPHIA 417953 389053 28900 52714 61 2353721 2089043 264678 440110 5140906 4365045 775861 875475 875475 -99614 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) 1606300 MEDICAL RESEARCH EMORY UNIVERSITY 201 DOWMAN DR ATLANTA GA 30322 580566256 501(C)(3) 24200 MEDICAL RESEARCH OHIO STATE UNIVERSITY 333 W 10TH AVE COLUMBUS OH 43210 316025986 501(C)(3) 5300 MEDICAL RESEARCH REGENTS OF THE UNIVERSITY OF MINNESOTA 200 SE OAK ST 600 MINNEAPOLIS MN 55455 416007513 501(C)(3) 112319 MEDICAL RESEARCH SCRIPPS RESEARCH INSTITUTE 10550 NORTH TORREY PINES ROAD OSP-TPC7 LA JOLLA CA 92037 330435954 501(C)(3) 71587 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10920 WILSHIRE BLVD 5TH FLOOR LOS ANGELES CA 90024 956006143 501(C)(3) 79200 MEDICAL RESEARCH UNIVERSITY OF FLORIDA DEPT OF NEUROLOGY L3-100 MCKNIGHT BRAIN INSTITUTE NEWELL DRIVE GAINESVILLE FL 32611 596002052 501(C)(3) 383420 MEDICAL RESEARCH UNIVERSITY OF IOWA DEPT OF PEDIATRICS 200 HAWKINS DRIVE IOWA CITY IA 52242 426004813 501(C)(3) 11400 MEDICAL RESEARCH UNIVERSITY OF ROCHESTER 515 HYLAN BUILDING RC BOX 270140 ROCHESTER NY 14627 160743209 501(C)(3) 314074 MEDICAL RESEARCH ALBANY RESEARCH INSTITUTE 113 HOLLAND AVE ALBANY NY 12208 141716021 501(C)(3) 80750 MEDICAL RESEARCH THE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 501(C)(3) 124698 MEDICAL RESEARCH UNIVERSITY OF SOUTH FLORIDA 4202 EAST FOWLER AVENUE TAMPA FL 33620 593102112 501(C)(3) 10374 MEDICAL RESEARCH BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON TX 77030 741613878 501(C)(3) 250000 MEDICAL RESEARCH Q-STATE BIOSCIENCES INC 179 SIDNEY ST CAMBRIDGE MA 02139 462469775 33578 MEDICAL RESEARCH UNIVERSITY OF MASSACHUSETTS 1 CAMPUS CENTER WAY AMHERST MA 01003 542084125 501(C)(3) 323865 MEDICAL RESEARCH UNIVERSITY OF VIRGINIA 580 MASSIE ROAD CHARLOTTESVILLE VA 22901 546001796 501(C)(3) 125000 MEDICAL RESEARCH UNIVERSITY OF WISCONSIN 1308 W DAYTON STREET MADISON WI 53706 396006492 501(C)(3) 89769 MEDICAL RESEARCH ARIZONA STATE UNIVERSITY 1151 S FOREST AVE TEMPE AZ 85287 860196696 501(C)(3) 150000 MEDICAL RESEARCH COLUMBIA UNIVERSITY 116TH STREET BROADWAY NEW YORK NY 10027 135598093 501(C)(3) 150000 MEDICAL RESEARCH NATIONAL ATAXIA FOUNDATION 600 HIGHWAY 169 S STE 1725 MINNEAPOLIS MN 55426 410832903 501(C)(3) 5000 MEDICAL RESEARCH PRESIDENT AND FELLOWS OF HARVARD 1563 MASSACHUSETTS AVE CAMBRIDGE MA 02138 042103580 501(C)(3) 88064 MEDICAL RESEARCH UNIVERSITY OF UTAH 201 PRESIDENTS CIRCLE SALT LAKE CITY UT 84112 876000525 501(C)(3) 300000 MEDICAL RESEARCH THOMAS JEFFERSON UNIVERSITY 4201 HENRY AVE PHILADELPHIA PA 19144 231352294 501(C)(3) 2000 MEDICAL RESEARCH TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT ST RM 310 PHILADELPHIA PA 19104 231352685 501(C)(3) 150000 MEDICAL RESEARCH UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 150000 MEDICAL RESEARCH UNIVERSITY OF COLORADO 20 UCB BOULDER CO 80309 846000555 501(C)(3) 7500 MEDICAL RESEARCH UNIVERSITY OF ALABAMA- BIRMINGHAM 1720 2ND AVE S BIRMINGHAM AL 35294 636005396 501(C)(3) 26912 MEDICAL RESEARCH 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. THOMAS HAMILTON BOARD MEMBER 1599543 CONTRIBUTIONS FROM BOARD MEMBER'S ORGANIZATION (CUREFA) TO FRIEDREICH'S ATAXIA RESEARCH ALLIANCE TO SUPPORT RESEARCH AND GRANT PROGRAMS. 0 X 6 391575 MARKET PRICE X 1 6944 COST OF MEAT 1 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B COPIES OF 990 ARE DISTRIBUTED TO BOARD MEMBERS FOR REVIEW AND APPROVAL PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C ALL NEW AND EXISTING BOARD MEMBERS REQUIRED TO ANNUALLY COMPLETE A CONFLICT OF INTEREST STATEMENT FORM 990, PART VI, SECTION B, LINE 15 EVALUATION AND COMPENSATION COMMITTEE PERFORMS EMPLOYEE EVALUATIONS AND DETERMINES SALARY INCREASES ON A YEARLY BASIS FOR ALL EMPLOYEES. COMMITTEE EXAMINES BENCHMARK DATA IN DETERMINING SALARIES FOR PRESIDENT 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 XI, LINE 9: FOOD INVENTORY CONSUMED -6,944. MISC REVENUE -725. 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.