2015-11-16T18:12:20-06:00 2014-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2014-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2015-11-16 1 SEAN MCMAHON P00350296 3123456200 2015-11-16 2014 2016-04-25 22:37:26Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 1597045 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 0 165 0 0 899898 1558523 0 0 0 3473 -18196 -33216 881702 1528780 808469 1042667 0 0 0 0 0 0 30075 138983 165673 947452 1208340 -65750 320440 1108989 1571929 7500 150000 1101489 1421929 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 1022667 1022667 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS. 112293 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 2014, FAST BROUGHT TOGETHER 527 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. 20000 20000 LITERACY AND ADVANCING ADVENTURES IN COMMUNICATING CAMP FOR INDIVIDUALS WITH ANGELMAN SYNDROME AND THEIR FAMILIES. 1154960 1 1 0 0 0 0 0 0 0 0 0 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 7 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 1 0 0 0 0 CA IL NJ FL MA 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 30.00 X X 0 0 0 DEBBIE GUAGLIARDO CO VICE CHAIRPERSON 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 3.00 X 0 0 0 KRISTY DIXON DIRECTOR 5.00 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 SHARON WEIL-CHALKER SCIENCE OFFICER 5.00 X 0 0 0 BRYAN THOMPSON DIRECTOR 5.00 X 0 0 0 DANIELLE PINDERS EVENTS COORDINATOR 20.00 X 0 0 0 SAM MAYDEW DIRECTOR 10.00 X 0 0 0 0 0 0 0 0 0 0 0 314712 1243811 20219 1558523 2136 2136 21556 20219 1337 1337 1337 14830 314712 48046 -33216 -33216 1528780 0 0 -29743 1022667 1022667 20000 20000 8000 8000 28247 28247 2173 2173 8313 6485 1828 112293 112293 TELEPHONE AND TELECOMMU 3297 3297 WEBSITE 1203 1203 POSTAGE AND DELIVERY 1146 1146 FILING FEES AND REGISTR 960 960 41 41 1208340 1154960 23305 30075 254739 196827 854250 1375102 1108989 1571929 7500 150000 7500 150000 X 925728 1406068 175761 15861 1101489 1421929 1108989 1571929 320440 0 X 0 1 X 0 0 X 214162 638779 956923 913798 1573348 4297010 214162 638779 956923 913798 1573348 4297010 1411229 2885781 570 746 279 3478 5073 4302083 0.67080 0.68190 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1576826 48046 48046 1528780 0 1528780 1256386 48046 48046 1208340 0 1208340 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. 1 NORTH AMERICA 0 0 PROGRAM SERVICES AND GRANTS TO FOREIGN ORGANIZATIONS LITERACY AND ADVANCING ADVENTURES IN COMMUNICATING CAMP FOR INDIVIDUALS WITH ANGELMAN SYNDROME AND THEIR FAMILIES. 20000 0 0 0 0 0 0 20000 0 20000 NORTH AMERICA LITERACY AND ADVANCING ADVENTURES IN COMMUNICATING CAMP FOR INDIVIDUALS WITH ANGELMAN SYNDROME AND THEIR FAMILIES. 20000 CHECK 1 0 0 0 0 0 0 PART I, LINE 2: EACH DISBURSEMENT OF ANY FUNDING AWARDED IS CONTINGENT UPON RECIPIENT'S DEMONSTRATION OF PROGRESS THAT IS SATISFACTORY TO THE FOUNDATION, IN ITS SOLE DISCRETION. RECIPIENTS WILL BE REQUIRED TO SUMBIT WRITTEN REPORTS TO THE FOUNDATION FROM TIME TO TIME AS FOLLOWS DESCRIBING PROGRESS MADE. RECIPIENT WILL SUBMIT A PROGRESS REPORT DUE 11 MONTHS AFTER RECEIPT OF THE FIRST DISBURSEMENT. THE INITIAL PROGRESS REPORT SHOULD FOCUS ON PROGRESS MADE TOWARD MEETING THE MILESTONES OUTLINED IN THE PROJECT. A FINAL PROGRESS REPORT MUST BE SUBMITTED WITHIN 60 DAYS AFTER PROJECT TERMINATION AND SHOULD INCLUDE A DETAILED ACCOUNTING OF THE FUNDS AWARDED. AT THE FOUNDATION'S REQUEST, THE RECIPIENT WILL ALSO MAKE A PRESENTATION ABOUT THE SIGNIFICANCE AND PROGRESS OF THEIR WORK TO A MEETING OF THE FOUNDATION'S BOARD AND ANY OTHER PARTICIPANTS CHOSEN BY THE FOUNDATION. UPON REASONABLE NOTICE, THE RECIPIENT AGREES TO ALLOW THE FOUNDATION'S REPRESENTATIVES TO VISIT THE LOCATION(S) WHERE THE ACTIVITY AND/OR RESEARCH IS BEING CONDUCTED IN ORDER TO GAIN FURTHER KNOWLEDGE TO EVALUATE PROGRESS WITH RESPECT TO THE PROJECT. ANNUAL GALA 329542 314712 14830 37792 3505 6749 329542 314712 14830 37792 3505 6749 48046 -33216 1 TEXAS AGRILIFE RESEARCH 600 JOHN KIMBROUGH BLVD STE 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) 797468 IDENTIFICATION AND CHARACTERIZATION OF NOVEL THERAPEUTICS FOR ANGELMAN SYNDROME UNIVERSITY OF MIAMI PO BOX 248106 CORAL GAMBLES FL 33124 590624458 115(1) 56000 TO STUDY POTENTIAL ANGELMAN SYNDROME THERAPEUTICS. TEXAS AGRILIFE RESEARCH 600 JOHN KIMBROUGH BLVD SYE 512 2142 TAMU COLLEGE STATION TX 77843 746000541 115(1) 150000 PRODUCTION OF A PIG MODEL FOR ANGELMAN SYNDROME RESEARCH 4 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 DEEEMED NECESSARY. THE FOUNDATION MAY ALSO OBTAIN MORE INFREQUENT 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.