2017-11-15T22:30:33-06:00 2016-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2016-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2017-11-15 1 SEAN MCMAHON P00350296 3123456200 2017-11-15 173.165.116.149 2017-11-15 22:23:20 CS P 4ABC7612A14277EE70F01FDD980FD1275A66357C 4ABC7612A14277EE70F01FDD980FD1275A66357C 2016 2018-03-14 21:41:22Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 8001098 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. 14 14 1 190 0 0 1103236 4404670 0 0 -740 -56 -24023 -7294 1078473 4397320 1116067 3039187 0 0 0 46130 0 0 235067 189320 365423 1305387 3450740 -226914 946580 1194959 2221539 0 80000 1194959 2141539 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 3039187 3039187 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS. 63381 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. IT IS ONE OF FAST'S OBJECTIVES TO EDUCATE, SUPPORT, AND STRENGTHEN THIS COMMUNITY. IN DECEMBER 2016, FAST BROUGHT TOGETHER 988 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 AND FIRE TEAM, DR. EDWIN WEEBER, AND THE OTHER FIRE TEAM MEMBERS DR. SCOTT DINDOT, DR. DAVID SEGAL AND DR. ANNE ANDERSON, AS WELL AS DR. ALLYSON BERENT, FAST'S CHIEF SCIENCE OFFICER. NON-SCIENTIFIC GUEST SPEAKERS INCLUDED COLIN FARRELL, JAI COURTNEY, RETTA SIRLEAF, ZACHARY LEVI, JOSH PECK, AND PAULA EVANS. IN ADDITION, AN EDUCATIONAL SUMMIT WAS HELD WITH GUEST EDUCATIONAL EXPERTS, KATE AHERN. NETWORKING/MENTORING OPPORTUNITIES WERE ALSO FACILITATED SO THAT PEOPLE CARING FOR INDIVIDUALS OF THE SAME AGE OR WITH SIMILAR CIRCUMSTANCES COULD EXCHANGE EXPERIENCES, INFORMATION AND GUIDANCE AND SOLIDIFY RELATIONSHIPS. 3102568 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 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 10 0 1 1 0 0 0 0 0 1 1 0 0 X 14 14 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 SHARON CLARIDGE SECRETARY 5.00 X X 0 0 0 KENA RICHERT TREASURER 10.00 X 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 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 ALLYSON BERENT SCIENCE OFFICER 10.00 X 0 0 0 JOHN SCHUELLTER DIRECTOR 5.00 X 0 0 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 0 0 0 0 0 0 0 0 192899 4211771 219971 4404670 217 217 3525086 3525359 -273 -273 -273 71125 192899 78419 -7294 -7294 4397320 0 0 -7350 3009187 3009187 30000 30000 46130 46130 13382 13265 117 8000 8000 235262 7938 227324 6746 6746 10194 2451 7743 50116 50116 3086 3086 BANK AND MERCHANT ACCOU 32100 32100 TELEPHONE AND TELECOMMU 4328 4328 FILING FEES AND REGISTR 1284 1284 POSTAGE AND DELIVERY 925 925 3450740 3102568 113105 235067 155192 165829 1033028 1127994 6739 927716 1194959 2221539 0 80000 0 80000 X 1179369 2125949 15590 15590 1194959 2141539 1194959 2221539 946580 0 X 0 1 X 0 0 X 956923 913798 1573348 1121969 4475795 9041833 956923 913798 1573348 1121969 4475795 9041833 2941587 6100246 279 3478 -740 -56 2961 9044794 0.67440 0.73190 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 4475739 78419 78419 4397320 0 4397320 3529159 78419 78419 3450740 0 3450740 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 264024 192899 71125 67896 3412 7111 264024 192899 71125 67896 3412 7111 78419 -7294 1 UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 2209231 IDENTIFICATION AND CHARACTERIZATION OF NOVEL THERAPEUTICS FOR ANGELMAN SYNDROME TEXAS AGRILIFE RESEARCH 600 JOHN KIMBROUGH BLVD STE 512 TAMU COLLEGE STATION TX 77843 746000541 115(1) 220704 PRODUCTION OF A PIG MODEL UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 479252 IMAGING EQUIPMENT UPGRADE FOR THE ANALYSIS OF THERAPEUITC PROTEINS BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 115(1) 100000 HUMANIZED MOUSE MODEL 4 FAST GAVE A GRANT TO TERRY JO BICHELL OF VANDERBILT UNIVERSITY TO LEAD A RESEARCH CONSORTIUM. 1 30000 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. X 3 213903 AVG HIGH LOW X COMPUTER SOFTWARE SUBSCRIPTION 1 6068 PURHCASE PRICE 0 0 0 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 11B THE BOOKS AND RECORDS ARE MAINTAINED BY FAST'S TREASURER AND REVIEWED BY THE CFO AND THE VICE CHAIRPERSON. 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 VICE CHAIRPERSON FOR REVIEW. THE TREASURER, CFO AND VICE CHAIRPERSON 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.