2014-11-17T17:43:46-06:00 2013-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2013-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2014-11-17 1 SEAN MCMAHON P00350296 3123456200 2014-11-17 2013 2015-11-30 17:44:51Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 913798 0 X WWW.CUREANGELMAN.ORG X 2008 IL THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST) IS DEDICATED TO FINDING A CURE FOR ANGELMAN SYNDROME (AS) AND RELATED DISORDERS THROUGH THE FUNDING OF AN AGRESSIVE RESEARCH AGENDA, EDUCATION, AWARENESS, AND ADVOCACY. 13 13 0 150 0 0 939523 899898 0 0 279 0 -17327 -18196 922475 881702 253890 808469 0 0 0 0 0 0 50930 105133 138983 359023 947452 563452 -65750 1174739 1108989 7500 7500 1167239 1101489 X ANGELMAN SYNDROME (AS) IS A NEURODEVELOPMENTAL DISORDER CHARACTERIZED BY GLOBAL DEVELOPMENT DELAYS AND SEVERE SPEECH IMPAIRMENT. A FEW INDIVIDUALS WITH AS DEVELOP FUNCTIONAL SPEECH, BUT MOST COMMUNICATE THROUGH A MIXTURE OF GESTURES, EYE GAZE, ADAPTED SIGN LANGUAGE AND AUGUMENTATIVE COMMUNICATION DEVICES. INDIVIDUALS WITH AS HAVE DEVELOPMENT DELAY AND INTELLECTUAL DISABILITIES. CURRENT RESEARCH SUGGESTS THAT NEURONAL DEVELOPMENT OCCURS CORRECTLY IN AS, BUT NEURONAL FUNCTIONING IS IMPAIRED. THIS NEURONAL IMPAIRMENT IMPACTS THE INDIVIDUAL'S ABILITY TO LEARN IN THAT SKILLS ARE ACQUIRED LESS RAPIDLY THAN IN AGE-MATCHED PEERS. THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS IS AN ORGANIZATION OF FAMILIES AND PROFESSIONALS DEDICATED TO FINDING A CURE FOR AS AND RELATED DISORDERS THROUGH THE FUNDING OF AN AGRESSIVE RESEARCH AGENDA, EDUCATION, ADVOCACY, AND COMMUNITY SUPPORT. FAST IS COMMITTED TO ASSISTING INDIVIDUALS LIVING WITH AS TO REALIZE THEIR FULL POTENTIAL AND QUALITY OF LIFE. 0 0 808469 808469 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS. 63544 AS AS IS A RARE DISORDER, THE COMMUNITY OF PARENTS AND CAREGIVERS OF INDIVIDUALS WITH AS RELY HEAVILY ON SOCIAL NETWORKING TO BECOME INFORMED AND SEEK ADVICE AND GUIDANCE ON THE CHALLENGES WHICH THE DISORDER PRESENTS. ITS IS ONE OF FAST'S OBJECTIVES TO EDUCATE, SUPPORT, AND STRENGTHEN THIS COMMUNITY. IN DECEMBER 2013, FAST BROUGHT TOGETHER 242 PARENTS/CAREGIVERS TO HEAR ABOUT THE LATEST RESEARCH ON AS, THE GOALS AND OBJECTIVES OF FAST, ITS PROGRESS TOWARDS MEETING THOSE GOALS AND PLANS FOR THE FUTURE. SPEAKERS INCLUDED THE HEAD OF FAST'S SCIENTIFIC ADVISORY BOARD, DR. EDWIN WEEBER, WHO CURED AS IN THE MOUSE MODEL, AS WELL AS DR. REBECCA BURDINE, FAST'S CHIEF SCIENCE OFFICER, COLIN FARRELL, JAI COURTNEY, RETTA SIRLEAF AND PAULA EVANS. IN ADDITION, NETWORKING/MENTORING OPPORTUNITIES WERE FACILITATED SO THAT PEOPLE CARING FOR INDIVIDUALS OF THE SAME AGE OR WITH SIMILAR CIRCUMSTANCES COULD EXCHANGE EXPERIENCES, INFORMATION AND GUIDANCE AND SOLIDIFY RELATIONSHIPS. NO OTHER PROGRAM SERVICES 872013 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 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 0 0 0 0 0 0 0 0 1 1 0 0 X 13 13 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 0 0 0 0 0 CA IL NJ FL OH X PAULA EVANS 8667830078 1918 SWEETBRIAR LANE DARIEN IL 60561 X PAULA EVANS CHAIPERSON 40.00 X X 0 0 0 MAIDDY DUNIGAN CO VICE CHAIRPERSON 20.00 X X 0 0 0 DEBBIE GUAGLIARDO CO VICE CHAIRPERSON & CFO 10.00 X X 0 0 0 SHARON CLARIDGE SECRETARY 5.00 X X 0 0 0 KENA RICHERT TREASURER 10.00 X X 0 0 0 REBECCA BURDINE CHIEF SCIENCE OFFICER 10.00 X 0 0 0 MELISSA ELKINS COMMUNICATIONS OFFICER 3.00 X 0 0 0 MEAGAN CROSS COMMUNICATIONS OFFICER 15.00 X 0 0 0 TERENCE SULLIVAN FINANCIAL OFFICER 3.00 X 0 0 0 SCOTT BACKER DIRECTOR 3.00 X 0 0 0 JAMIE KATZMAN DIRECTOR 3.00 X 0 0 0 SHARON WEIL-CHALKER SCIENCE OFFICER 3.00 X 0 0 0 BRYAN THOMPSON DIRECTOR 5.00 X 0 0 0 DANIELLE PINDERS EVENTS COORDINATOR 20.00 X 0 0 0 SAM MAYDER DIRECTOR 10.00 X 0 0 0 0 0 0 0 0 0 0 0 144081 755817 899898 13900 144081 32096 -18196 -18196 881702 0 0 -18196 808469 808469 8000 8000 20076 20076 3007 3007 31856 4284 27572 62148 62148 2793 1396 1397 WEBSITE 5345 5345 TELEPHONE AND TELECOMMU 2407 2407 FEES 2011 126 1885 POSTAGE AND DELIVERY 755 755 585 585 947452 872013 24509 50930 295215 254739 378541 854250 500983 0 1174739 1108989 7500 7500 7500 7500 X 1142194 925728 25045 175761 1167239 1101489 1174739 1108989 -65750 0 X 0 1 X 0 0 X 92712 214162 638779 956923 913798 2816374 92712 214162 638779 956923 913798 2816374 894786 1921588 6 570 746 279 1601 2817975 0.68190 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 913798 32096 32096 881702 0 881702 979548 32096 32096 947452 0 947452 PART XI, LINE 2D - OTHER ADJUSTMENTS: DIRECT EXPENSES FROM FUNDRAISING EVENTS (PAGE 9, PART VIII, LINE 8B) PART XII, LINE 2D - OTHER ADJUSTMENTS: DIRECT EXPENSES FROM FUNDRAISING EVENTS (PAGE 9, PART VIII, LINE 8B) FORM 990, SCHEDULE D, PART XI, LINE 2D AND PART XII, LINE 2D PART XI, LINE 2D - DIRECT EXPENSES FROM FUNDRAISING EVENTS INCLUDED ON PAGE 9, PART VIII, LINE 8B. PART XII, LINE 2D - DIRECT EXPENSES FROM FUNDRAISING EVENTS INCLUDED ON PAGE 9, PART VIII, LINE 8B. ANNUAL GALA 157981 144081 13900 21929 1440 8727 157981 144081 13900 21929 1440 8727 32096 -18196 1 TEXAS AGRILIFE RESEARCH 600 JOHN KIMBROUGH BLVD SYE 512 2142 TAMU COLLEGE STATION TX 77843 746000541 115(1) 56000 EPIGENETIC REPRESSION OF THE PATERNAL UBE3A ALLELE IN NEURONS UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 635979 IDENTIFICATION AND CHARACTERIZATION OF NOVEL THERAPEUTICS FOR ANGELMAN SYNDROME UNIVERSITY OF NORTH CAROLINA SPONSORED RESEARCH 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 27599 566001393 115(1) 56000 TARGETING UPSTREAM REGULATORS OF UBE3A IN ANGELMAN SYNDROME UNIVERSITY OF NORTH CAROLINA SPONSORED RESEARCH 104 AIRPORT DRIVE SUITE 2200 CHAPEL HILL NC 27599 566001393 115(1) 10000 TARGETING UPSTREAM REGULATORS OF UBE3A IN ANGELMAN SYNDROME UNIVERSITY OF MIAMI PO BOX 248106 CORAL GAMBLES FL 33124 590624458 115(1) 41460 TO STUDY POTENTIAL ANGELMAN SYNDROME THERAPEUTICS. UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 9030 IMAGING EQUIPMENT UPGRADE FOR THE ANALYSIS OF THERAPEUTIC PROTEINS 5 PART I, LINE 2: THE FOUNDATION REQUIRES SEMI-ANNUAL REPORTS FROM THE RECIPIENT OF THE FUNDS WHICH MUST INCLUDE A PROGRESS STATUS AND AN ACCOUNTING OF THE FUNDS. IN ADDITION, THE FOUNDATION RESERVES THE RIGHT TO MAKE PERIODIC SIGHT VISITS AS DEEMED NECESSARY. THE FOUNDATION MAY ALSO OBTAIN MORE FREQUENT INFORMAL UPDATES VIA TELEPHONE OR E-MAIL. FORM 990, PART VI, SECTION A, LINE 8B THE FOUNDATION DOES NOT CURRENTLY HAVE ANY COMMITTEES WITH THE AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY. FORM 990, PART VI, SECTION B, LINE 11 THE BOOKS AND RECORDS ARE MAINTAINED BY FAST'S TREASURER AND REVIEWED BY THE CFO AND THE CO-VICE CHAIRPERSONS. FAST'S TREASURER GIVES FAST'S BOOKS AND RECORDS TO AN OUTSIDE CPA FIRM TO PREPARE FAST'S FORM 990. ONCE COMPLETED THE FORM 990 IS PROVIDED TO THE TREASURER, CFO AND CO-VICE CHAIRPERSONS FOR REVIEW. THE TREASURER, CFO AND CO-VICE CHAIRPERSONS REVIEW THE RETURN IN GREAT DETAIL, ASKING CLARIFYING QUESTIONS AND SUGGESTING CHANGES. ONCE THE RECOMMENDED CHANGES HAVE BEEN INCORPORATED INTO THE RETURN, THE FORM 990 IS DISTRIBUTED TO ALL BOARD MEMBERS FOR QUESTIONS, COMMENTS, AND RECOMMENDED CHANGES. ONCE THE BOARD MEMBERS QUESTIONS HAVE BEEN ANSWERED AND ANY CHANGES INCORPORATED INTO THE RETURN, THE FORM 990 IS FILED. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS ARE REQUIRED TO CERTIFY ON AN ANNUAL BASIS ANY INTEREST THAT COULD GIVE RISE TO A CONFLICT. IF A CONFLICT APPEARS TO HAVE ARISEN, FAST BOARD OF DIRECTORS MEET TO DISCUSS THE POTENTIAL CONFLICT OF INTEREST AND CONSULT LEGAL COUNSEL AND OTHER APPLICABLE THIRD-PARTY EXPERTS AS DEEMED NECESSARY. FORM 990, PART VI, SECTION B, LINE 15 ALL BOARD OF DIRECTORS, OFFICERS, AND SCIENTIFIC ADVISORY BOARD MEMBERS ARE NON-COMPENSATED VOLUNTEERS. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS, THE CONFLICT OF INTEREST POLICY, AND THE FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST.