2012-05-14T13:04:21-05:00 2011-12-31 231518888 MAILLIE FALCONIERO & COMPANY LLP PO BOX 3068 WEST CHESTER PA 193813068 990 2011-01-01 522122720 FRIEDREICH'S ATAXIA RESEARCH ALLIANCE FRIE 4848796160 PO BOX 1537 SPRINGFIELD VA 22151 JENNIFER FARMER 4848796160 2012-05-11 1 EDWARD FRONCZKOWSKI CPA P01259092 6106964353 2011 2016-02-24 21:20:13Z JENNIFER FARMER 533 W UWCHLAN AVENUE DOWNINGTOWN PA 19335 3507441 0 X WWW.CUREFA.ORG X 1998 VA TO TREAT AND CURE FRIEDREICH'S ATAXIA BY ADVANCING RESEARCH, AWARENESS AND PARTNERSHIPS. 16 15 5 400 0 0 2851697 2831171 0 0 57570 12704 289732 133726 3198999 2977601 2976699 2484153 0 0 530359 359219 0 0 81823 227308 200872 3734366 3044244 -535367 -66643 2928697 2783758 248806 170510 2679891 2613248 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 2652613 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 2011. IN TOTAL, FARA PROVIDED >$2.5M IN RESEARCH GRANT AND CLINICAL RESEARCH INFRASTRUCTURE FUNDING. OVER THE PAST YEAR, 29 NEW GRANT APPLICATIONS WERE SUBMITTED AND AFTER RIGOROUS PEER REVIEW, 13 WERE DETERMINED MERITORIOUS AND AWARDED FUNDING IN 2011 AND EARLY 2012. IN ADDITION, BASED ON EXCELLENT PROGRESS, CONTINUATION FUNDING WAS PROVIDED FOR 14 PROJECTS, FOR A TOTAL OF 27 GRANTS AWARDED.- RESEARCH INTO FA IS PROVIDING INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY.- SEE SCHEDULE O FOR CONTINUATION OF PROGRAM SERVICE ACCOMPLISHMENTS.- THESE FUNDED PROJECTS ADDRESS NUMEROUS IMPORTANT RESEARCH QUESTIONS THAT DIRECTLY TARGET FARA'S STRATEGIC RESEARCH INITIATIVES, INCLUDING IMPROVED FUNCTIONAL MEASURES AND BIOMARKERS FOR CLINICAL TRIALS, ADVANCES IN GENE AND CELL THERAPY APPROACHES, IMPROVED TOOLS FOR DRUG DISCOVERY, AND EVALUATION OF CANDIDATES TO ADVANCE TO THE TREATMENT PIPELINE. 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. - PARTICULARLY PROMISING RESEARCH FUNDED BY FARA IS BEING DONE BY DR. SID HECHT AT ARIZONA STATE UNIVERSITY. HE IS SYNTHESIZING COMPOUNDS KNOWN AS MULTIFUNCTIONAL RADICAL QUENCHERS (MRQS) AND TESTING THEM IN FA CELL AND ANIMAL MODELS TO DETERMINE THEIR POTENTIAL AS TREATMENTS FOR FA. MRQ COMPOUNDS ARE DESIGNED TO BLUNT MITOCHONDRIAL DEGRADATION RESULTING FROM OXIDATIVE STRESS AND TO AUGMENT ATP PRODUCTION IN PARTIALLY DYSFUNCTIONAL MITOCHONDRIA. IN A RECENTLY PUBLISHED PAPER (ARCE ET AL, 2011, A STRATEGY FOR SUPPRESSING REDOX STRESS WITHIN MITOCHONDRIA, ACS MED. CHEM. LETT. 2:608-613), DR. HECHT AND HIS COLLEAGUES DEMONSTRATED THAT THEY HAD DEVELOPED AN MRQ THAT PROTECTS FA FIBROBLASTS FROM OXIDATIVE STRESS MORE EFFECTIVELY THAN EITHER IDEBENONE OR IDEBENOL. THEY ARE CONTINUING TO DEVELOP AND EVALUATE MODIFIED MRQ COMPOUNDS TO IDENTIFY THOSE THAT ARE LIKELY TO BE THE MOST EFFECTIVE THERAPEUTIC AGENTS FOR FA.- ANOTHER GRANT AWARD TARGETING DRUG DISCOVERY HAS GONE TO DR. GINO CORTOPASSI AT THE UNIVERSITY OF CALIFORNIA, DAVIS. DR. CORTOPASSI HAS DEVELOPED AN APPROACH THAT TARGETS REPURPOSING OF DRUGS. HE DEVELOPED ASSAY TO SCREEN DRUGS THAT HAVE ALREADY BEEN APPROVED FOR HUMAN USE IN OTHER DISEASES AND INDICATIONS AND IDENTIFY THOSE DRUGS THAT PROTECT THE FA PATIENT CELLS FROM DEATH. THIS GRANT AWARD FOCUSES ON DETERMINING THE MECHANISMS OF ACTION, RELATIVE POTENCY, AND EFFICACY IN CELL AND ANIMAL MODELS OF THE SELECTED DRUGS IN PREPARATION FOR CLINICAL TESTING IN INDIVIDUALS WITH FA. SUCH AN APPROACH TO REPURPOSING DRUGS OFFERS A POTENTIAL EXPEDITED COURSE TO CLINICAL TESTING BECAUSE MUCH IS ALREADY KNOWN ABOUT THESE DRUGS AS THEY HAVE ALREADY BEEN STUDIED IN OTHER DISEASES.- FARA IS ALSO FUNDING THE DEVELOPMENT OF CLINICAL MANAGEMENT GUIDELINES FOR FA, WHICH WILL BE A VALUABLE RESOURCE FOR ASSISTING CLINICIANS AND FA PATIENTS IN MAKING APPROPRIATE HEALTH CARE DECISIONS. ADDITIONALLY, FARA CONTINUES TO SUPPORT THE STANDARDIZED CHARACTERIZATION OF FA MOUSE MODELS AT THE JACKSON LABORATORY. THE EXCITING ADVANCES IN DIFFERENTIATION OF INDUCED PLURIPOTENT STEM (IPS) CELL LINES FROM FA PATIENTS INTO SENSORY NEURONS AND CARDIOMYOCYTES IS ANOTHER RESEARCH AREA THAT FARA IS SUPPORTING.- 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 : A DATABASE THAT CAPTURES INFORMATION ON INDIVIDUALS WITH A SPECIFIC CONDITION - FARA PATIENT REGISTRY : WWW.CUREFA.ORG/REGISTRY - NATURAL 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. - COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN IN FA): AN INTERNATIONAL NETWORK OF 11 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.HTML- THROUGH THE CCRN IN FA WE HAVE COLLECTED SIX YEARS OF NATURAL HISTORY DATA (ONGOING) IN MORE THAN 600 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 $500,000 IN 2011 TO CLINICAL RESEARCH INFRASTRUCTURE IN DIRECT FUNDING TO THE CCRN IN FA CENTERS AND RELATED CLINICAL RESEARCH ACTIVITIES.- TITLES AND SUMMARIES OF MOST OF THE PROJECTS PRESENTLY FUNDED BY FARA ARE AVAILABLE AT:WWW.CUREFA.ORG/RPMP/PUBLIC/PGGRANTLIST.ASPX AND COMPLETE LISTINGS OF GRANTS AWARDED BY YEAR CAN BE ACCESSED AT: WWW.CUREFA.ORG/GRANTS-AWARDED.HTML 137876 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. IN 2011, FARA SPONSORED THE LARGEST FA SCIENTIFIC CONFERENCE HELD IN STRASBOURG, FRANCE MAY 5-7 2011.- MORE THAN 200 SCIENTISTS, PHYSICIANS, AND ADVOCACY PARTNERS CONVENED AT THE INSTITUTE OF GENETICS AND MOLECULAR AND CELLULAR BIOLOGY (IGBMC) IN STRASBOURG, FRANCE TO SHARE THEIR LATEST RESEARCH ON FRIEDREICH'S ATAXIA. THE IGBMC WAS A PERFECT PLACE TO HOLD SUCH A MEETING BECAUSE IT IS HOME TO SEVERAL RESEARCHERS WHO HAVE LONGSTANDING COMMITMENTS AND CONTRIBUTIONS TO FA RESEARCH. THESE RESEARCHERS ARE PART OF THE CORE GROUP WHO IDENTIFIED THE FA GENE AND MUTATION WHICH CAUSE FA, DEVELOPED THE FIRST ANIMAL MODELS, AND NOW CONTINUE TO DO IMPORTANT RESEARCH INTO UNDERSTANDING FRATAXIN FUNCTION, MITOCHONDRIAL DYSFUNCTION IN FA, AND DEVELOPMENT OF NEW ANIMAL AND CELLULAR MODELS.- THE STRASBOURG MEETING WAS THE LARGEST GATHERING OF THE FA SCIENTIFIC COMMUNITY AND INCLUDED: - SCIENTISTS FROM 15 COUNTRIES - SEVEN PHARMACEUTICAL COMPANIES PARTICIPATING THROUGH ATTENDANCE, PRESENTATIONS OF RESEARCH, AND/OR SPONSORSHIP - SIX BIOTECHNOLOGY COMPANIES CONTRIBUTING THROUGH SPONSORSHIP - 10 ADVOCACY PARTNERS SUPPORTING THE CONFERENCE THROUGH SPONSORSHIP AND/OR ATTENDANCE - 58 ORAL PRESENTATIONS AND 53 POSTER PRESENTATIONS OF ORIGINAL RESEARCH - 25 SCHOLARSHIPS AWARDED TO JUNIOR INVESTIGATORS SUBMITTING COMPETITIVE ABSTRACTS TO SUPPORT THEIR PARTICIPATION IN THE CONFERENCE- THIS CONFERENCE COVERED ALL ASPECTS OF FA RESEARCH FROM THE INTRICACIES OF HOW THE GAA REPEAT EXPANSION IN THE FA GENE RESULTS IN LOWER FRATAXIN PROTEIN TO RESULTS OF CLINICAL TRIALS. THE CONFERENCE WAS DIVIDED INTO EIGHT SESSIONS BASED ON TOPIC AREA, BUT ALL ATTENDEES PARTICIPATED EQUALLY THROUGHOUT AS INSIGHTS FROM ONE AREA OF THE RESEARCH MAY HAVE IMPLICATIONS AND INSIGHTS INTO ANOTHER AREA. BASIC RESEARCHERS AND CLINICAL SCIENTISTS SHARED THEIR FINDINGS, IDEAS AND CHALLENGES SO THAT EACH COULD LEARN FROM THE APPLIED KNOWLEDGE.- THE SCIENTIFIC PROCEEDINGS OF THIS MEETING WERE RECENTLY PUBLISHED IN THE JOURNAL OF DISEASE MODELS AND MECHANISMS - ALAIN MARTELLI, MAREK NAPIERALA, HELENE PUCCIO., UNDERSTANDING THE GENETIC AND MOLECULAR PATHOGENESIS OF FRIEDREICH'S ATAXIA THROUGH ANIMAL AND CELLULAR MODELSDIS. MODEL. MECH. MARCH 2012, DOI: 10.1242/DMM.008706VOL. 5 NO. 2 165-176- FARA ORGANIZED A FOCUSED MEETING OF RESEARCHERS WORKING ON THE GENERATION AND DIFFERENTIATION OF FA IPS CELLS TO DISCUSS ISSUES AND COMPARE RESULTS. THIS MEETING TOOK PLACE IN PHILADELPHIA IN OCTOBER 2011 AND FOLLOWED UP ON ITEMS DISCUSSED AT THE FA STEM CELL TASK FORCE MEETING HELD DIRECTLY AFTER THE STRASBOURG CONFERENCE IN MAY. AN IMPORTANT OUTCOME WAS THE DEVELOPMENT OF THE FA IPS DATABASE, WHICH PROVIDES DETAILED INFORMATION ABOUT ALL OF THE AVAILABLE FA IPS CELL LINES. 110491 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. IN 2011, FARA WAS ABLE TO PARTNER WITH SEVERAL CELEBRITIES TO CREATE VIDEO-BASED AWARENESS CAMPAIGNS LEVERAGED THROUGH SOCIAL MEDIA.- THE CAST OF ARMY WIVES - TAKE ACTION, DONATE, CURE FA - HTTP://WWW.YOUTUBE.COM/WATCH?V=WX-C4LWSP0I- RONDE BARBER AND KYLE BRYANT TALK ABOUT FRIEDREICH'S ATAXIA - HTTP://WWW.YOUTUBE.COM/WATCH?V=3WYBNC1_EZI- FARA STAFF AND SCIENTIFIC ADVISORS WERE INVITED TO GIVE FORMAL PRESENTATIONS AT SEVERAL MEDICAL AND PATIENT CONFERENCES THROUGHOUT THE YEAR; INCLUDING THE ANNUAL CHILD NEUROLOGY MEETING IN OCTOBER IN SAVANNAH, GA.- ALSO, IN 2011 FARA LAUNCHED A NEW AMBASSADOR PROGRAM WHICH MENTORS AND ENCOURAGES INDIVIDUALS WITH FA TO DEVELOP AND SHARE THEIR PERSONAL STORY AND TO BEGIN GRASSROOTS OUTREACH TO RAISE AWARENESS. 2900980 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 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 1 2 0 1 5 1 0 0 0 0 0 1 1 0 0 0 0 X 16 15 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 RONALD BARTEK 40.00 X X X 160000 0 0 EDWARD RAMSEY X X 0 0 0 MARILYN E DOWNING X X 0 0 0 RUTH DEWITT X 0 0 0 JOSEPH PONT X 0 0 0 PAUL AVERY X 0 0 0 PETER CRISP X 0 0 0 THOMAS A DECOTIIS PHD X X 0 0 0 DR EARL GILLER X 0 0 0 DR HOLLY HEDRICK X 0 0 0 NICHOLAS A JOHNSON X 0 0 0 LAURA KALICK X 0 0 0 STEVE KLASKO X 0 0 0 PAUL MARCOTTE X 0 0 0 PETER PITTS X 0 0 0 ROB DHOBLE X 0 0 0 JENNIFER FARMER 40.00 X 82000 0 0 242000 0 0 1 0 1 0 0 2030278 800893 2831171 12704 12704 663566 2030278 529840 133726 133726 2977601 0 0 146430 1813550 1813550 670603 670603 229900 181500 16200 32200 102600 78100 7125 17375 26719 20127 2109 4483 11307 11307 7072 750 322 6000 1500 1500 16528 10546 4673 1309 85624 75465 8392 1767 33378 31947 1431 758 758 2480 2480 FACILITIES AND EQUIPMEN 17965 9781 3294 4890 CREDIT CARD & BANK FEES 9283 177 2104 7002 BUSINESS REGISTRATION F 6863 3910 25 2928 BOOKS, SUBSCRIPTIONS & 5813 1617 327 3869 2301 1407 894 3044244 2900980 61441 81823 539316 287214 42400 687079 164689 124538 17978 5144 3794 2000 2552 1794 1061762 577989 1100000 1100000 2928697 2783758 248806 170510 248806 170510 X 2379891 2468579 300000 144669 2679891 2613248 2928697 2783758 -66643 0 X X 0 1 1 X 0 X 1614044 1929438 3433440 2980429 2831171 12788522 1614044 1929438 3433440 2980429 2831171 12788522 1266349 11522173 25762 25162 4041 57570 12704 125239 12913761 39486 0.89220 0.87430 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 1 0 1 616 0 0 1 2464 0 1 1100 4180 0 EXPLANATION OF OTHER LOBBYING ACTIVITIES: PART II-B, LINE 1I: THE ORGANIZATION PAID DUES TO 501(C)(4) ORGANIZATIONS THAT ARE ENGAGED IN INFLUENCING LEGISLATION. 3794 2000 1794 1794 INVESTMENT IN EDISON PHARMACEUTICALS, INC. 1100000 C 1100000 2977601 3044244 -66643 -66643 3507441 529840 529840 2977601 0 2977601 3574084 529840 529840 3044244 0 3044244 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X: 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 2008, 2009 AND 2010 IS SUBJECT TO EXAMINATION BY THE IRS, GENERALLY FOR THREE YEARS AFTER THE TAX RETURNS WERE FILED. PART XI, LINE 8 - OTHER ADJUSTMENTS: INVESTMENT GAINS/LOSSES PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE PART XIII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 227849 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH AND GRANT PROGRAM 442754 0 0 0 0 0 0 670603 0 670603 EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 221607 WIRE/CHECK EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 45000 WIRE EUROPE MEDICAL RESEARCH 33342 WIRE EUROPE MEDICAL RESEARCH 29507 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 101719 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 49800 WIRE EUROPE MEDICAL RESEARCH 75000 WIRE EAST ASIA AND THE PACIFIC MEDICAL RESEARCH 24628 WIRE EUROPE MEDICAL RESEARCH 90000 WIRE 0 0 0 0 0 0 FARA ENERGY BALL 1273293 800781 472512 271355 RIDE ATAXIA DALLAS 205330 188830 16500 28057 1215221 1040667 174554 230428 2693844 2030278 663566 529840 529840 133726 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) 112343 MEDICAL RESEARCH UNIVERSITY OF SOUTH FLORIDA 4202 EAST FOWLER AVENUE TAMPA FL 33620 593102112 501(C)(3) 199736 MEDICAL RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH ST CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 222194 MEDICAL RESEARCH ALBANY RESERACH INSTITUTE INC 113 HOLLAND AVENUE ALBANY NY 12208 141716021 501(C)(3) 37192 MEDICAL RESEARCH ARIZONA STATE UNIVERSITY UNIVERSITY DRIVE AND MILL AVENUE TEMPE ARIZ TEMPE AZ 85287 860196696 501(C)(3) 225280 MEDICAL RESEARCH THE WINIFRED MASTERSON BURKE MEDICAL RESEARCH INSTITUTE 785 MAMARONECK AVENUE WHITE PLAINS NY 10605 133434924 501(C)(3) 100000 MEDICAL RESEARCH SCRIPPS RESEARCH INSTITUTE 10550 NORTH TORREY PINES ROAD OSP-TPC7 LA JOLLA CA 92037 330435954 501(C)(3) 163465 MEDICAL RESEARCH THE JACKSON LABORATORY 600 MAIN STREET BAR HARBOR ME 04609 010211513 501(C)(3) 130792 MEDICAL RESEARCH THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10920 WILSHIRE BLVD 5TH FLOOR LOS ANGELES CA 90024 956006143 501(C)(3) 189200 MEDICAL RESEARCH EMORY UNIVERSITY 201 DOWMAN DRIVE ATLANTA GA 30322 580566256 501(C)(3) 13400 MEDICAL RESEARCH GENETIC DISEASE SCREENING PROGRAM - CA DEPT OF PUBLIC HEALTH 850 MARINA BAY PARKWAY RICHMOND CA 94804 943402381 501(C)(3) 20000 MEDICAL RESEARCH LSU HEALTH SCIENCE CENTER 433 BOLIVAR STREET NEW ORLEANS LA 70112 721115391 501(C)(3) 89958 MEDICAL RESEARCH STATEGICS 1455 ADAMS DR SUITE 2050 MENLO PARK CA 94025 260305594 152690 MEDICAL RESEARCH UNIVERSITY OF CHICAGO 5801 SOUTH ELLIS AVENUE CHICAGO IL 60637 362177139 501(C)(3) 3900 MEDICAL RESEARCH UNIVERSITY OF IOWA DEPT OF PEDIATRICS 200 HAWKINS DRIVE IOWA CITY IA 52242 426004813 501(C)(3) 3400 MEDICAL RESEARCH THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET RM P 221 FRANKLIN BLDG PHILADELPHIA PA 19104 231352685 501(C)(3) 150000 MEDICAL RESEARCH 15 16 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, PART I, LINE 2: GRANTS ARE REVIEWED BY INDEPENDENT SCIENTIFIC ADVISORS AND APPROVED BY BOARD. X 0 0 0 0 0 0 0 0 0 RONALD BARTEK 160000 0 0 0 0 0 0 0 0 0 160000 0 0 0 X 3 42117 MARKET PRICE 0 0 0 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 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. THIS PROCESS IN WHICH THE ORGANIZATION ASSUMES RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT HAS NOT CHANGED FROM THE PRIOR YEAR.