2015-06-11T08:31:59-05:00 2014-12-31 521446779 JOHNSON LAMBERT LLP 700 SPRING FOREST ROAD STE 115 RALEIGH NC 27609 990 2014-01-01 364253176 CITIZENS UNITED FOR RESEARCH IN EPILEPSY CITI 3122551801 430 W ERIE NO 210 CHICAGO IL 60654 ROBIN HARDING CHIEF EXECUTIVE OFFICER 3122551801 2015-06-10 1 JOHN HUSKINS P01081531 9197196400 2015-06-11 2014 2016-02-25 16:41:14Z ROBIN HARDING 430 W ERIE NO 210 CHICAGO IL 60654 8289112 0 X WWW.CUREEPILEPSY.ORG X 1998 IL CURE'S MISSION IS TO CURE EPILEPSY, TRANSFORMING AND SAVING MILLIONS OF LIVES. WE IDENTIFY AND FUND CUTTING-EDGE RESEARCH, CHALLENGING SCIENTISTS WORLDWIDE TO COLLABORATE AND INNOVATE IN PURSUIT OF THIS GOAL. OUR COMMITMENT IS UNRELENTING. 13 13 12 370 0 0 4584975 5533358 0 0 365014 186204 -140787 -329404 4809202 5390158 2792588 4832430 0 0 865470 752661 0 0 283442 872559 1114187 4530617 6699278 278585 -1309120 10417108 9967864 2028100 2952799 8389008 7015065 CITIZENS UNITED FOR RESEARCH IN EPILEPSY IS DEDICATED TO FINDING A CURE FOR EPILEPSY BY RAISING FUNDS FOR RESEARCH AND BY INCREASING AWARENESS OF THE PREVALENCE AND DEVASTATION OF THIS DISEASE. 0 0 5638813 4832430 ISSUING OF GRANTS TO FUND RESEARCH FOR A CURE FOR EPILEPSY. SINCE ITS INCEPTION IN 1998, CURE HAS RAISED MORE THAN $32 MILLION TO FUND EPILEPSY RESEARCH PROJECTS AND OTHER INITIATIVES THAT WILL LEAD THE WAY TO A CURE. CURE AWARDS SEED GRANTS FOR NOVEL RESEARCH PROJECTS THAT ADDRESS THE GOALS OF "NO SEIZURES, NO SIDE EFFECTS." THESE GRANTS ALLOW NEW AND ESTABLISHED INVESTIGATORS TO EXPLORE NEW INNOVATIVE AREAS AND COLLECT THE DATA NECESSARY TO APPLY FOR FURTHER FUNDING BY THE NATIONAL INSTITUTES OF HEALTH (NIH). TO DATE, CURE HAS AWARDED FUNDING FOR OVER 165 CUTTING EDGE PROJECTS. 410805 CURE SPONSORS SCIENTIFIC CONFERENCES THAT ARE WORKING TO BRING THE BRIGHTEST MINDS TOGETHER TO DISCUSS SOME OF OUR BIGGEST AND MOST IMPORTANT ISSUES, DRIVING AWARENESS OF THE PREVALENCE AND DEVASTATION OF EPILEPSY THROUGH THE FRONTIERS IN RESEARCH SEMINAR SERIES. CURE BELIEVES THAT AWARENESS IS A NECESSARY VEHICLE TO INCREASE THE AMOUNT OF FUNDING FOR BASIC RESEARCH TOWARD A CURE FOR EPILEPSY. 6049618 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 12 0 1 12 1 0 0 0 0 0 1 1 0 0 0 0 X 13 13 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AR CA CO CT FL GA HI IL KS KY MD MA MI MN MS NH NJ NM NY NC OH OK OR PA RI SC TN UT VA WA WI WV X ROBIN HARDING 3122551801 430 W ERIE NO 210 CHICAGO IL 60654 SUSAN AXELROD FOUNDING CHAIR 1.00 X X 0 0 0 GARDINER LAPHAM CHAIR 1.00 X X 0 0 0 SHARON O'KEEFE CHAIR-ELECT 1.00 X X 0 0 0 ANN BENSCHOTER SECRETARY 1.00 X X 0 0 0 THOMAS HYNES TREASURER (TO SEP '14) 1.00 X X 0 0 0 PAUL HELDMAN TREASURER 1.00 X X 0 0 0 CRAIG ALBERT DIRECTOR (TO JAN '14) 1.00 X 0 0 0 PHIL EMERY DIRECTOR (FROM SEP '14) 1.00 X 0 0 0 CAROL FULP DIRECTOR 1.00 X 0 0 0 SCOTT LEISHER DIRECTOR 1.00 X 0 0 0 GREG LEWIS DIRECTOR 1.00 X 0 0 0 JOEL MARCUS DIRECTOR 1.00 X 0 0 0 CONNIE MILSTEIN DIRECTOR 1.00 X 0 0 0 EVELYN NUSSENBAUM DIRECTOR 1.00 X 0 0 0 C RENZI STONE DIRECTOR 1.00 X 0 0 0 ROBIN HARDING CHIEF EXECUTIVE OFFICER 37.50 X 118303 0 3981 JULIE MILDER ASSOC RESEARCH DIRECTOR 37.50 X 100903 0 14910 219206 0 18891 2 0 0 0 0 2945985 2587373 5533358 181509 181509 2343596 2338901 4695 4695 4695 222550 2945985 560053 -337503 -337503 OTHER 900099 8099 8099 8099 5390158 0 0 -143200 3833143 3833143 999287 999287 122284 61142 30571 30571 519493 399274 59541 60678 10645 7605 1478 1562 52063 38249 6963 6851 48176 34689 6727 6760 62128 62128 294360 185278 80170 28912 8557 7553 1004 119341 60075 35982 23284 108752 70490 23164 15098 65364 47075 9135 9154 98757 65375 26995 6387 301723 221207 80516 15315 15315 10717 7578 1659 1480 LICENSES & FEES 15435 7490 10 7935 DUES & SUBSCRIPTIONS 10855 3520 4085 3250 MISCELLANEOUS 2883 588 2295 6699278 6049618 366218 283442 680137 1094588 4650789 3638131 250000 420000 279039 78086 60009 40602 59196 13858 25616 45338 4452854 4632455 18664 18664 10417108 9967864 74605 132851 1953495 2819948 2028100 2952799 X 8139008 6245065 250000 770000 8389008 7015065 10417108 9967864 -1309120 -64823 0 X 0 1 X 1 0 X 1983520 2000856 5517115 4584975 5533358 19619824 1983520 2000856 5517115 4584975 5533358 19619824 458730 19161094 289204 204428 150303 186840 181509 1012284 8413 1482 5417 5293 8099 28704 20660812 5722753 0.92740 0.92570 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 6699278 6699278 484964 121241 0 0 286506 400421 376531 484964 1548422 2322633 0 0 0 0 71627 100105 94133 121241 387106 580659 0 0 0 0 13795 1639 12156 45401 12219 33182 45338 5346505 -64823 123448 58625 5287880 102278 102278 5390158 6720448 123448 123448 6597000 102278 102278 6699278 PART XI, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 102,278. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 102,278. 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 648287 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 250000 MIDDLE EAST & NORTH AFRICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 100000 0 0 0 0 0 0 998287 0 998287 NORTH AMERICA GABAERGIC INTERNEURON MIGRATION IMPAIRMENTS IN EPILEPTIC ENCEPHALOPATHIES 250000 EUROPE ENDOSOMAL TOLL-LIKE RECEPTOR (ETLR) TARGETING TO PREVENT/TREAT EPILEPSY: IN VIVO PROOF-OF-CONCEPT 249537 EUROPE GENETIC AND OPTOGENETIC DISSECTION OF SEIZURES IN RETT SYNDROME 100000 EUROPE MODELING EPILEPTIC ENCEPHALOPATHIES IN HUMAN BRAIN ORGANOIDS 100000 MIDDLE EAST & NORTH AFRICA DECIPHERING THE GENE REGULATORY NETWORKS IN HUMAN INHIBITORY INTERNEURONS AND THEIR ROLE IN INFANTILE SPASMS 100000 EUROPE EXCESSIVE NEURONAL INHIBITION CHANGES PHYSIOLOGICAL FUNCTIONS AND INCREASES SUDEP RISK 99750 EUROPE OPTOGENETIC REGULATION OF THE TRANSCRIPTION OF EPILEPSY GENES: AN INNOVATIVE STRATEGY TO CURE DRUG-RESISTANT EPILEPSY 50000 EUROPE PERICYTE PDGFRB SIGNALING DURING SEIZURES 50000 8 0 0 0 0 0 0 PART I, LINE 2: GRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS. CHICAGO GALA BENEFIT 2179150 2034400 144750 18150 30627 287644 BOSTON 989385 911585 77800 1277 222355 3168535 2945985 222550 19427 30627 509999 560053 -337503 1 THE REGENTS OF THE UNIVERSITY OF CALIFORNIA 2195 HEARST AVE BERKELEY CA 94720 946002123 501(C)(3) 434090 TRANSFORMING GROWTH FACTOR BETA SIGNALING FOLLOWING TRAUMATIC BRAIN INJURY AS A TARGET FOR THE PREVENTION OF ACQUIRED EPILEPSY; INFANTILE SPASMS: CLINICAL AND GENETIC PREDICTORS OF OUTCOMES AND THERAPEUTIC INSIGHTS BAYLOR COLLEGE OF MEDICINE PO BOX 201361 HOUSTON TX 77216 741613878 501(C)(3) 364098 INFANTILE SPASMS SYNDROME: FROM GENE TO BEDSIDE, AN ACCELERATED PATH TO NEW THERAPY; IS: MECHANISMS AND CONSEQUENCES AS THERAPEUTIC TARGETS TRUSTEES OF TUFTS UNIVERSITY 200 HARRISON AVE BOSTON MA 02111 042103634 501(C)(3) 317409 APC CKO MOUSE AS A NEW MODEL OF INFANTILE SPASMS; RESTORING THE FUNCTION OF THE K+-CI- CONTRANSORTER TO LIMIT PHARMACORESISTANT SEIZURES. UNIVERSITY OF WISCONSIN-MADISON 21 NORTH PARK ST MADISON WI 53715 396006492 501(C)(3) 300000 TARGETING EPIGENETICS TO TREAT EPILEPSY IN TUBEROUS SCLEROSIS COMPLEX: AN EPIPHANY FROM PATIENT WHOLE GENOMIC EXPRESSION ANALYSIS; IND-ENABLING PRECLINICAL STUDIES OF 2DG FOR PREVENTION OF POST-TRAUMATIC EPILEPSY IN PLASTICITY-SUSCEPTIBLE RATS ICAHN SCHOOL OF MEDICINE ONE GUSTAVE L LEVY PL NEW YORK NY 10029 136171197 501(C)(3) 250000 NON-CODING RNA MEDIATED CONTROL OF NEURONAL EXCITABILITY AND EPILEPSY INDIANA UNIVERSITY PO BOX 78000 DETROIT MI 48278 356001673 501(C)(3) 250000 GABAERGIC INTERNEURON MIGRATION IMPAIRMENTS IN EPILEPTIC ENCEPHALOPATHIES THE RECTORVISITORS OF UNIVERSITY OF VIRGINIA PB BOX 400915 CHARLOTTESVILLE VA 22904 546001796 501(C)(3) 250000 IDENTIFICATION OF NOVEL THERAPIES FOR INTRACTABLE PEDIATRIC EPILEPSY DUE TO THE CORTICAL DYSPLASIAS. UNIVERSITY OF WASHINGTON 12455 COLLECTIONS DR SEATTLE WA 60693 605799469 501(C)(3) 225000 MECHANISM OF ANTI-EPILEPTIC ACTION OF CANNABIDIOL IN A MOUSE MODEL OF DRAVET SYNDROME; EPIGENOMIC APPROACHES TO EPILEPSY ALBERT EINSTEIN COLLEGE 1300 MORRIS PARK AVE BRONX NY 10461 131624225 501(C)(3) 216797 IDENTIFYING NEW THERAPIES FOR INFANTILE SPASMS LEGACY EMANUAL HOSPITAL CENTER-1225 NE 2ND AVE PORTLAND OR 97232 930386823 501(C)(3) 187529 PREVENTION OF ACQUIRED EPILEPSY THROUGH AN EPIGENETIC INTERVENTION NEW YORK MEDICAL COLLEGE 40 SUNSHINE COTTAGE RD VALHALLA NY 10595 131099420 501(C)(3) 155000 DEVELOPING AND TESTING NOVEL TREATMENTS FOR INFANTILE SPASMS BROWN UNIVERSITY 164 ANGELL ST BOX 1929 PROVIDENCE RI 02912 050258809 501(C)(3) 100000 AUTONOMOUS SEIZURE PREVENTION USING BIOLUMINESCENCE-DRIVEN OPTOGENETICS (BLOG) SEATTLE CHILDREN'S HOSPITAL PO BOX 24728 SEATTLE WA 98124 910564748 501(C)(3) 100000 A COMPARATIVE STUDY OF SUDDEN UNEXPECTED DEATH IN MOUSE MODELS OF FOCAL CORTICAL DYSPLASIA AND DRAVET SYNDROME THE TRUSTUEES OF COLUMBIA UNIVERSITY PO BOX 28789 NEW YORK NY 10087 135598093 501(C)(3) 100000 SUDEP RISK AND BIOMARKERS IN THE SURGICAL EPILEPSY POPULATION UNIVERSITY OF CALIFORNIA IRVINE BIOSCI III SUITE 1400 IRIVINE CA 92697 952226406 501(C)(3) 99928 ON-DEMAND RESTORATION OF THE DENTATE GATE FOR TEMPORAL LOBE EPILEPSY THE CHILDREN'S HOSPITAL OF PHILADELPHIA PO BOX 8500 PHILADELPHIA PA 19178 231352166 501(C)(3) 98720 EPILEPSY TREATMENT IN A MOUSE MODEL USING SPECIFIC SUBSETS OF CORTICAL INTERNEURONS DERIVED FROM EMBRYONIC STEM CELLS YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 90000 EXOMSOMES AS CARRIERS OF CIRCUIT ALTERATONS IN EPILEPSY; HHMI FELLOWS UNIVERSITY OF COLORADO DENVER PO BOX 910238 DENVER CO 80291 846000555 501(C)(3) 55864 METABOLOMIC BIOMARKER DISCOVERY IN INFANTILE SPAMS STANFORD UNIVERSITY PO BOX 44253 STANFORD CA 94144 941156365 501(C)(3) 50000 MODULATION OF GABAERGIC TRANSMISSION AND ABSENCE SEIZURES BY OPTICAL STIMULATION OF ASTROCYTES UNIVERSITY OF ILLINOIS PO BOX 4610 SPRINGFIELD IL 62708 376000511 501(C)(3) 50000 MODULATION OF GABAERGIC TRANSMISSION AND ABSENCE SEIZURES BY OPTICAL STIMULATION OF ASTROCYTES UNIVERSITY OF TEXAS DEPT 750 PO BOX 660120 DALLAS TX 75266 746000949 501(C)(3) 50000 TARGET DELIVERY OF CARBAMAZEPINE FOR IMPROVED ANTIEPILEPTIC DRUG THERAPY DURING PREGNANCY WAYNE STATE UNIVERSITY 5057 WOODWARD 13TH FLOOR DETROIT MI 48202 386028429 501(C)(3) 50000 IDENTIFICATION OF ABERRANT GENE REGULATORY NETWORKS IN INFANTILE SPASMS REGENTS OF UNIVERSITY OF CALIFORNIA SAN FRAN UCSF BOX 0248 SAN FRANCISCO CA 94143 916036493 501(C)(3) 40000 HHMI FELLOWS 23 PART I, LINE 2: GRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS. FORM 990, PART VI, SECTION B, LINE 11 FORM 990 IS REVIEWED BY THE FINANCE MANAGER, TREASURER, AND CHIEF EXECUTIVE OFFICER. WHEN THE DRAFT IS APPROVED, IT IS SENT TO THE ENTIRE BOARD. FORM 990, PART VI, SECTION B, LINE 12C EACH BOARD MEMBER SIGNS IT ANNUALLY AND EXPECTS TO SELF-MONITOR. CONFLICTS ARE DEALT WITH ON A CASE-BY-CASE BASIS. FORM 990, PART VI, SECTION B, LINE 15A COMPARABLE SALARY INFORMATION IS OBTAINED AND REVIEWED USING AN OUTSIDE EXECUTIVE SEARCH FIRM. THE BOARD OF DIRECTORS HAS FINAL APPROVAL, AND REVIEWS COMPENSATION ANNUALLY. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS ARE NOT GENERALLY AVAILABLE TO THE PUBLIC.