2014-06-05T09:57:43-05:00 2013-12-31 521446779 JOHNSON LAMBERT LLP 700 SPRING FOREST RD STE 115 RALEIGH NC 27609 990 2013-01-01 364253176 CITIZENS UNITED FOR RESEARCH IN EPILEPSY CITI 8007657118 430 W ERIE NO 210 CHICAGO IL 60654 ROBIN HARDING INTERIM EXECUTIVE DIRECTOR 8007657118 2014-06-05 1 JOHN HUSKINS P01081531 9197196400 2014-06-05 2013 2015-11-30 17:44:51Z X ROBIN HARDING 430 W ERIE NO 210 CHICAGO IL 60654 8591759 0 X WWW.CUREEPILEPSY.ORG X 1998 IL TO PROVIDE FUNDING FOR RESEARCH TO FIND A CURE FOR EPILEPSY. 14 14 14 370 0 0 5517115 4584975 0 0 159182 365014 -88331 -140787 5587966 4809202 3405292 2792588 0 0 669317 865470 0 0 488903 933812 872559 5008421 4530617 579545 278585 11308591 10417108 3118509 2028100 8190082 8389008 X CITIZENS UNITED FOR RESEARCH IN EPILEPSY IS DEDICATED TO FINDING A CURE FO EPILEPSY BY RAISING FUNDS FOR RESEARCH AND BY INCREASING AWARENESS OF THE PREVALENCE AND DEVASTATION OF THIS DISEASE. 0 0 3298554 2792588 ISSUING OF GRANTS TO FUND RESEARCH FOR A CURE FOR EPILEPSY. SINCE ITS INCEPTION IN 1998, CURE HAS RAISED MORE THAN $26 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. CURE ALSO SPONSORS SCIENTIFIC CONFERENCES THAT ARE WORKING TO BRING THE BRIGHTEST MINDS TOGETHER TO DISCUSS SOME OF OUR BIGGEST AND MOST IMPORTANT ISSUES. 518567 INCREASING THE AWARENESS OF THE PREVALENCE AND DEVASTATION OF EPILEPSY. CURE BELIEVES THAT AWARENESS IS A NECESSARY VEHICLE TO INCREASE THE AMOUNT OF FUNDING FOR BASIC RESEARCH TOWARD A CURE FOR EPILEPSY. CURE HAS RECEIVED EXTENSIVE MEDIA COVERAGE FOR EPILEPSY. THIS HAS INCLUDED A FEATURED SEGMENT ON 60 MINUTES WITH KATIE COURIC, A BOSTON GLOBE EDITORIAL ON THE GRAVE UNDERFUNDING OF EPILEPSY RESEARCH, INTERVIEWS AND COVERAGE ON MSNCB'S MORNING JOE, CNN'S PIERS MORGAN, FRANK FONTANA'S DOWN AND DIRTY WITH FRANK FONTANA, A NEW YORK TIMES ARTICLE ON ONE CURE FAMILY'S STRUGGLES WITH EPILEPSY, AND FOX NEWS' SEGMENT ON EPILEPSY AND CURE - FEATURING SUSAN, DAVID, AND LAUREN AXELROD. CURE'S AWARENESS AND ADVOCACY EFFORTS WERE RECOGNIZED BY THE AMERICAN EPILEPSY SOCIETY, AS WELL AS THE INTERNATIONAL LEAGUE AGAINST EPILEPSY, AND THE INTERNATIONAL BUREAU FOR EPILEPSY, AND BY CHICAGO MAGAZINE, WHICH NAMED FOUNDER SUSAN AXELROD A "CHICAGOAN OF THE YEAR." 3817121 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 11 0 1 14 1 0 0 0 0 0 1 1 0 0 0 0 X 14 14 0 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AR CA CT FL GA HI KS KY MD MA MI MN MS NH NJ NM NC OK OR PA RI SC TN UT VA WA WI WV X ROBIN HARDING 8007657118 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 GREG LEWIS SECRETARY 1.00 X X 0 0 0 THOMAS HYNES TREASURER 1.00 X X 0 0 0 CRAIG ALBERT DIRECTOR 1.00 X 0 0 0 ANN BENSCHOTER DIRECTOR 1.00 X 0 0 0 JEANNE DONALTY DIRECTOR (TO SEP '13) 1.00 X 0 0 0 CAROL FULP DIRECTOR (FROM SEP '13) 1.00 X 0 0 0 PAUL HELDMAN DIRECTOR (FROM SEP '13) 1.00 X 0 0 0 BARBARA KELLY DIRECTOR (TO SEP '13) 1.00 X 0 0 0 SCOTT LEISHER DIRECTOR 1.00 X 0 0 0 JOEL MARCUS DIRECTOR (FROM SEP '13) 1.00 X 0 0 0 CONNIE MILSTEIN DIRECTOR 1.00 X 0 0 0 EVELYN NUSSENBAUM DIRECTOR 1.00 X 0 0 0 SHARON O'KEEFE DIRECTOR 1.00 X 0 0 0 RANDOLPH SIEGEL DIRECTOR (TO SEP '13) 1.00 X 0 0 0 C RENZI STONE DIRECTOR (FROM SEP '13) 1.00 X 0 0 0 SETH WOHLBERG DIRECTOR (TO MAR '13) 1.00 X 0 0 0 BOGDAN EWENDT EXECUTIVE DIRECTOR (TO NOV '13) 37.50 X 224403 0 15754 ROBIN HARDING INTERIM EXECUTIVE DIRECTOR (FROM NOV '13) 37.50 X 0 0 0 MARGARET SCHNEIDER DIRECTOR OF DEVELOPMENT 37.50 X 105977 0 12972 330380 0 28726 2 0 1 0 0 1297881 3287094 4584975 186840 186840 3713951 3535777 178174 178174 178174 100700 1297881 246780 -146080 -146080 OTHER 900099 5293 5293 5293 4809202 0 0 224227 2543290 2543290 249298 249298 240157 120984 59134 60039 509346 345206 31811 132329 4088 2410 616 1062 59061 36981 8409 13671 52818 32933 6251 13634 12700 12700 178121 105535 2919 69667 16911 16911 178759 100084 47731 30944 84617 61359 1675 21583 56226 33954 9239 13033 120546 70469 35735 14342 136616 30790 105826 6070 6070 6222 3289 1070 1863 LICENSES & FEES 13614 6594 329 6691 DUES & SUBSCRIPTIONS 3864 2960 904 0 58293 54074 4219 4530617 3817121 224593 488903 727563 680137 4520518 4650789 166666 250000 220880 279039 39576 60009 43943 18327 23188 25616 5602629 4452854 7571 18664 11308591 10417108 102467 74605 3016042 1953495 3118509 2028100 X 7673416 8139008 516666 250000 8190082 8389008 11308591 10417108 278585 -79659 0 X 0 1 X 1 0 X 2661656 1983520 2000856 5517115 4584975 16748122 2661656 1983520 2000856 5517115 4584975 16748122 430052 16318070 23748 289204 204428 150303 186840 854523 4493 8413 1482 5417 5293 25098 17627743 6879530 0.92570 0.90010 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 5146 720 4426 38797 17607 21190 25616 4588949 -79659 40000 -39659 4628608 180594 180594 4809202 4390023 40000 40000 4350023 180594 180594 4530617 PART XI, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 180,594. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 180,594. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 149750 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 99548 0 0 0 0 0 0 249298 0 249298 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, DNA METHYLATION IN EPILEPSY 99548 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM EXCESSIVE NEURONAL INHIBITION CHANGES PHYSIOLOGICAL FUNCTIONS AND INCREASES SUDEP RISK 99750 EUROPE CONVERSION OF REACTIVE GLIA INTO NEURONS IN MTLE: A NEW WAY TO GENERATE GABAERGIC INTERNEURONS AND REDUCE SEIZURE ACTIVITY 50000 3 0 0 0 0 0 0 PART I, LINE 2: GRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS. CHICAGO GALA BENEFIT 1398581 1297881 100700 1819 34824 210137 1398581 1297881 100700 1819 34824 210137 246780 -146080 1 CREIGHTON UNIVERSITY 2500 CALIFORNIA PLAZA OMAHA NE 68123 470376583 501(C)(3) 250000 THE CRITICAL ROLE OF PPARGAMMA IN KETOGENIC DIET EFFICACY STANFORD UNIVERSITY PO BOX 44253 STANFORD CA 94144 941156365 501(C)(3) 250000 CLOSED-LOOP CONTROL OF INJURY-INDUCED AND GENETIC SEIZURES USING TEMPORALLY PRECISE CELL-TYPE-SPECIFIC OPTOGENETIC MANIPULATION WESLEYAN UNIVERSITY 237 HIGH STREET NORTH COLLEGE 3 MIDDLETOWN CT 06459 060646959 501(C)(3) 250000 GABAERGIC INTERNEURON TRANSPLANTATION FOR CIRCUIT REPAIR AND SEIZURE SUPPRESSION IN TEMPORAL LOBE EPILEPSY UNIVERSITY OF WASHINGTON 12455 COLLECTIONS DRIVE SEATTLE WA 60693 605799469 501(C)(3) 249976 PREVENTION OF POSTTRAUMATIC EPILEPSY WITH FDA-APPROVED ANTI-INFLAMMATORY DRUGS LEGACY EMANUEL HOSPITAL & HEALTH CENTER 1225 NE 2ND AVENUE PORTLAND OR 97232 930386823 501(C)(3) 249798 PREVENTION OF ACQUIRED EPILEPSY THROUGH AN EPIGENETIC INTERVENTION BAYLOR COLLEGE OF MEDICINE PO BOX 201361 HOUSTON TX 77216 741613878 501(C)(3) 241787 TARGETED MOLECULAR THERAPY FOR KCNQ2 ENCEPHALOPATHY TRUSTEES OF BOSTON UNIVERSITY BU MEDICAL CAMPUS 25 BUICK STREET BOSTON MA 02215 042103547 501(C)(3) 137000 DEVELOPMENT OF NOVEL JAK/STAT INHIBITORS FOR DISEASE MODIFICATION IN EPILEPSY YALE SCHOOL OF MEDICINE PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 100000 ROLE OF VIGILANCE STATE AND CIRCADIAN PHASE IN SEIZURE-RELATED DEATH BOSTON CHILDREN'S HOSPITAL PO BOX 441413 BOSTON MA 02241 042774441 501(C)(3) 100000 SEARCHING FOR COMMON GENE VARIANTS IN SUDDEN DEATH IN CHILDHOOD WITH FEBRILE SEIZURES, SIDS, & SUDEP LEHIGH UNIVERSITY 526 BRODHEAD AVE BETHLEHEM PA 18015 240795445 501(C)(3) 100000 IGF-1 SIGNALING IN POSTTRAUMATIC EPILEPTOGENESIS MAX PLANCK FLORIDA CORPORATION ONE MAX PLANCK WAY JUPITER FL 33458 262117502 501(C)(3) 100000 TOWARDS A CHANDELIER CELL-BASED CURE FOR EPILEPSY THE TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA PO BOX 785541 PHILADELPHIA PA 19178 231352685 501(C)(3) 99816 NETWORK AND AXONAL MECHANISMS UNDERLYING THE TRANSITION TO POST-TRAUMATIC EPILEPSY FOLLOWING REPETITIVE MILD TBI (CONCUSSION) JOHNS HOPKINS UNIVERSITY BLOOMBERG SCHOOL OF PUBLIC HEALTH 615 N WOLFE ST BALTIMORE MD 21205 520595110 501(C)(3) 50000 AUTOPHAGY DEFECT IN EPILEPSY UNIVERSITY OF WISCONSIN-MADISON RESEARCH SPONSORED PROGRAMS 21 NORTH PARK STREET SUITE 6401 MADISO MADISON WI 53715 396006492 501(C)(3) 50000 BRAIN AGING IN PERSONS WITH CHILDHOOD ONSET EPILEPSY: A POPULATION BASED INVESTIGATION UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 125 MACNIDER HALL CHAPEL HILL NC 27599 566001393 501(C)(3) 49184 AN ESSENTIAL ELEMENT FOR NOVEL, ASTROCYTE FOCUSED EPILEPSY THERAPIES: THE CREATION OF A CHIMERIC, ASTROCYTE SELECTIVE ADENO-ASSOCIATED VIRUS VECTOR 15 PART I, LINE 2: GRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS. X X X 1 0 0 0 0 0 0 0 0 BOGDAN EWENDT EXECUTIVE DIRECTOR (TO NOV '13) 224403 0 0 0 0 0 6038 0 9716 0 240157 0 0 0 PART I, LINE 4A BOGDAN EWENDT: $39,813 FORM 990, PART VI, SECTION A, LINE 4 THE ORGANIZATION'S BYLAWS WERE AMENDED IN THE FOLLOWING WAYS: -THE POSITIONS OF "FOUNDING CHAIR" AND "CHAIR-ELECT" WERE CREATED -THE POSITION OF CHAIR WILL BE TERM LIMITED -THE COMPOSITION OF THE EXECUTIVE COMMITTEE WAS REDUCED -THE MAXIMUM SIZE OF THE BOARD OF DIRECTORS WAS INCREASED FORM 990, PART VI, SECTION B, LINE 11 FORM 990 IS REVIEWED BY THE DIRECTOR OF FINANCE & ADMINISTRATION, 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.