2017-11-14T12:25:24-06:00 2016-12-31 521446779 JOHNSON LAMBERT LLP 4242 SIX FORKS RD STE 1500 RALEIGH NC 27609 990 2016-01-01 364253176 CITIZENS UNITED FOR RESEARCH IN EPILEPSY CITI 3122551801 430 W ERIE NO 210 CHICAGO IL 60654 KATHLEEN S CARR CHIEF EXECUTIVE OFFICER 3122551801 2017-11-13 1 JOHN HUSKINS P01081531 9197196400 2017-11-14 66.77.128.118 2017-11-14 13:25:01 ES P 3C780522382E1AE215F3587EB16F1557D834D6E2 E92EC12878E6ED9F107DFBFC32DE29E76F0C1F5F 2016 2021-01-29 14:40:06Z KATE CARR 430 W ERIE NO 210 CHICAGO IL 60654 6961470 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. 14 14 19 370 0 0 5734565 4560949 0 0 182661 108198 -281802 -236564 5635424 4432583 4452139 3369674 0 0 1307742 1547268 0 0 529839 1159185 1153480 6919066 6070422 -1283642 -1637839 8986158 8107165 3728037 3984995 5258121 4122170 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 4970459 3369674 ISSUING OF GRANTS TO FUND RESEARCH FOR A CURE FOR EPILEPSY. SINCE ITS INCEPTION IN 1998, CURE HAS RAISED MORE THAN $50 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 220 CUTTING EDGE PROJECTS IN 15 COUNTRIES. 142188 0 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. 5112647 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 16 0 1 19 1 0 0 0 0 0 1 1 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AK AR AZ CA CO CT DC FL GA HI IL KS KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WI WV X X KATE CARR 3122551801 430 W ERIE NO 210 CHICAGO IL 60654 SUSAN AXELROD FOUNDING CHAIR 1.00 X X 0 0 0 SHARON O'KEEFE CHAIR 1.00 X X 0 0 0 ANN BENSCHOTER CHAIR ELECT 1.00 X X 0 0 0 GARDINER LAPHAM IMMEDIATE PAST CHAIR (TO SEP '16) 1.00 X X 0 0 0 SCOTT COPELAND DIRECTOR (FROM SEP '16) 1.00 X 0 0 0 BLAKE CUNNEEN DIRECTOR 1.00 X 0 0 0 PHIL EMERY DIRECTOR 1.00 X 0 0 0 LYNN FLEISHER DIRECTOR 1.00 X 0 0 0 CAROL FULP DIRECTOR 1.00 X 0 0 0 PAUL HELDMAN DIRECTOR 1.00 X 0 0 0 CELIA HUBER DIRECTOR (FROM SEP '16) 1.00 X 0 0 0 SCOTT LEISHER DIRECTOR 1.00 X 0 0 0 GREG LEWIS DIRECTOR (TO SEP '16) 1.00 X 0 0 0 STACEY PIGOTT DIRECTOR (FROM SEP '16) 1.00 X 0 0 0 CONNIE MILSTEIN DIRECTOR (TO SEP '16) 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 262114 0 23061 BRENDA ARANDA DIRECTOR, MARKETING & COMMUNICATION 37.50 X 127266 0 6489 JULIE MILDER ASSOCIATE DIRECTOR, RESEARCH 37.50 X 103385 0 21999 492765 0 51549 3 0 1 0 0 1752812 229614 2578523 4560949 157025 157025 2083446 2132273 -48827 -48827 -48827 160050 1752812 396614 -236564 -236564 4432583 0 0 -128366 3069774 3069774 299900 299900 285176 205326 39925 39925 1054478 759224 147627 147627 9552 6878 1337 1337 107293 77251 15021 15021 90769 65353 12708 12708 14005 10083 1961 1961 137243 98815 19214 19214 16263 16263 129820 37078 48598 44144 193581 163843 14869 14869 79845 57490 11178 11177 97936 57297 39864 775 362689 141232 14696 206761 19149 13787 2681 2681 12583 9059 1762 1762 BAD DEBT 50000 50000 DUES & SUBSCRIPTIONS 24341 17525 3408 3408 LICENSES & FEES 12938 6469 6469 3087 3087 6070422 5112647 427936 529839 571866 575409 2646206 1226872 1110000 1200000 180690 146766 52980 94753 155765 45775 127693 109990 4278061 4734713 18662 18662 8986158 8107165 68302 122173 3659735 3297789 0 565033 3728037 3984995 X 3328014 2234802 1930107 1887368 5258121 4122170 8986158 8107165 X -1637839 251888 250000 0 X 0 1 X 1 0 X 5517115 4584975 5533358 5734565 4560949 25930962 5517115 4584975 5533358 5734565 4560949 25930962 1036514 24894448 150303 186840 181509 182661 157025 858338 5417 5293 8099 18809 26808109 765550 0.92860 0.90510 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6070422 6070422 453521 113380 0 0 376531 484964 495953 453521 1810969 2716454 94133 121241 123988 113380 452742 679113 68862 8679 60183 86903 37096 49807 109990 4477710 251888 251888 4225822 206761 206761 4432583 5863661 0 5863661 206761 206761 6070422 PART XI, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 206,761. PART XII, LINE 4B - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 206,761. 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 100000 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 99900 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 100000 0 0 0 0 0 0 299900 0 299900 EUROPE INNOVATOR 50000 EUROPE INNOVATOR 50000 EAST ASIA AND THE PACIFIC TAKING FLIGHT 99900 NORTH AMERICA TAKING FLIGHT 100000 4 0 0 0 0 0 0 PART I, LINE 2: GRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS. CHICAGO GALA BENEFIT 1912862 1752812 160050 75516 321098 1912862 1752812 160050 75516 321098 396614 -236564 1 BAYLOR COLLEGE OF MEDICINE PO BOX 201361 HOUSTON TX 77216 741613878 501(C)(3) 465441 INFANTILE SPASMS: MECHANISMS AND CONSEQUENCES AS THERAPEUTIC TARGETS; NOVEL MODELS OF EPILEPTIC ENCEPHALOPATHIES CHILDREN'S HOSPITAL OF BOSTON PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 250000 GENETICS OF SUDDEN UNEXPECTED DEATH IN PEDIATRICS AND HIPPOCAMPAL PATHOLOGY-A NOVEL ENTITY LINKING SIDS AND SUDC TO EPILEPSY CREIGHTON UNIVERSITY 2500 CALIFORNIA PLZ OMAHA NE 68178 470376583 501(C)(3) 250000 OREXIN TRIGGERS AUTONOMIC DESTABILIZATION IN SUDEP EMORY UNIVERSITY PO BOX 935084 ATLANTA GA 31193 580566259 501(C)(3) 250000 FUNCTIONAL AND CLINICAL EVALUATION OF NMDA RECEPTOR MUTATIONS IN EPILEPTIC ENCEPHALOPATHY UNIVERSITY OF WISCONSIN-MADISON 21 NORTH PARK ST STE 6401 MADISON WI 53715 396006492 501(C)(3) 250000 EPIGENETIC REGULATION OF TONIC INHIBITION IN EPILEPSY UNIVESITY OF IOWA 118 S CLINTON ST IOWA CITY IA 52242 426004813 501(C)(3) 250000 ABNORMAL VENTILATORY RESPONSE TO CO2 IN EPILEPSY PATIENTS: A POTENTIAL BIOMARKER FOR SEIZURE INDUCED RESPIRATORY DEPRESSION & MODIFICATION BY SSRI UNIVERSITY OF PITTSBURGH 123 UNIVERSITY PLACE PITTSBURGH PA 15213 250965591 501(C)(3) 249993 GENETIC INFLUENCES ON EPILEPTOGENESIS AND BIOSUSEPTIBILITY TO POST-TRAUMATIC EPILEPSY UNIVERSITY OF COLORADO 3100 MARINE ST ROOM 481 BOULDER CO 80309 846000555 501(C)(3) 249168 THE ROLE OF NEURO-INFLAMMATION IN A RAT MODEL OF COMORBID EPILEPSY AND AUTISM TUFTS UNIVERSITY 200 HARRISON AVE BOSTON MA 02111 042103634 501(C)(3) 135000 APC CKO MOUSE AS A NEW MODEL OF INFANTILE SPASMS UNIVERSITY OF COLORADO DENVER PO BOX 910238 DENVER CO 80291 846000555 501(C)(3) 126330 METABOLOMIC BIOMARKER DISCOVERY IN INFANTILE SPASMS ALBERT EINSTEIN COLLEGE 1300 MORRIS PARK AVE BRONX NY 10461 131624225 501(C)(3) 120138 IDENTIFYING NEW THERAPIES FOR INFANTILE SPASMS UNIVERSITY OF CALIFORNIA 1855 FOLSOM ST SAN FRANCISCO CA 94143 946036493 501(C)(3) 100000 PEDIATRIC EPILEPSIES: MICRORNAS DETERMINE NETWORK EXCITABILITY DURING DEVELOPMENT UNIVERSITY OF MIAMI 1320 S DIXIE HWY STE 650 CORAL GABLES FL 33146 590624458 501(C)(3) 99999 MOLECULAR MECHANISMS OF EPILEPSY-CAUSING MUTATIONS IN THE IKM CHANNEL: ANTI-EPILEPTIC EFFECT OF POLYUNSATURATED FATTY ACIDS (PUFAS) VARIANTS. MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 042697983 501(C)(3) 49998 EPILEPTOGENIC NEURONAL HOMEOSTASIS AFTER INJURY: FOCUS ON NEUROFILAMENTS UNIVERSITY OF CONNECTICUT 438 WHITNEY RD EXT UNIT 1133 STORRS CT 06269 060772160 501(C)(3) 45000 REPROGRAMMING NG2 GLIAL CELLS INTO INHIBITORY NEURONS IN AN EPILEPSY MODEL SCN2A RESEARCH FOUNDATION 5523 PAPAGALLO DR OCEANSIDE CA 92057 472484744 501(C)(3) 40000 SCN2A ANTISENSE OLIGONUCLEOTIDES PROJECT STAGE 3B 16 0 PART I, LINE 2: GRANTEES ARE REQUIRED TO MAKE PERIODIC PROGRESS REPORTS. 0 0 0 0 0 0 0 0 0 ROBIN HARDING CHIEF EXECUTIVE OFFICER 262114 0 0 0 0 0 6900 0 16161 0 285175 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B 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 AND CONFLICT OF INTEREST POLICY ARE NOT GENERALLY AVAILABLE TO THE PUBLIC. THE ORGANIZATION'S FINANCIAL STATEMENTS ARE AVAILABLE ON ITS WEBSITE. FORM 990, PART XI, LINE 8: CURE HAS RESTATED ITS 2015 FINANCIAL STATEMENTS IN ORDER TO CORRECT AN ERROR IN THE RECOGNITION OF GRANTS PAYABLE.