2018-11-15T15:25:16-06:00 2017-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2017-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2018-11-15 1 SEAN MCMAHON P00350296 3123456200 2018-11-15 173.165.116.149 2018-11-15 15:09:14 CS P FB1BEE36FFA8700082452907943930F5C90D0054 FB1BEE36FFA8700082452907943930F5C90D0054 2017 2019-02-21 02:37:17Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 9589963 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 1 260 2 0 4404670 8790002 0 0 -56 -18970 -7294 -21333 4397320 8749699 3039187 5218272 0 0 46130 57754 0 0 94966 365423 367804 3450740 5643830 946580 3105869 2221539 7713003 80000 2465595 2141539 5247408 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 5218272 5218272 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS. 232586 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 2017, FAST BROUGHT TOGETHER 1,138 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, TAYLOR LAUTNER, 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. 5450858 1 1 0 0 0 0 0 0 0 0 0 0 0 1 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 1 1 1 0 0 1 9 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 CO WI IA MI X PAULA EVANS 8667830078 1512 ROYAL OAK ROAD DARIEN IL 60561 X PAULA EVANS CHAIPERSON 40.00 X X 0 0 0 MAIDDY DUNIGAN 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 CHIEF INFORMATION 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 DIRECTOR 20.00 X 0 0 0 SAM MAYDEW DIRECTOR 5.00 X 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 30.00 X 0 0 0 JOHN SCHUELLTER DIRECTOR 10.00 X 0 0 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 0 0 0 0 0 0 0 0 3433755 5356247 8790002 11632 2 11630 713579 744181 -30602 -30602 -30602 74750 3433755 96083 -21333 -21333 8749699 0 2 -40305 5218272 5218272 53738 26869 26869 4016 2008 2008 35403 35403 8000 8000 46843 46843 1534 1534 10007 2454 7553 221416 221416 3030 1515 1515 COMPUTER AND SOFTWARE E 17130 8565 8565 BANK AND MERCHANT ACCOU 13606 13606 TELEPHONE AND TELECOMMU 5305 5305 PAYROLL SERVICE FEES 3226 1613 1613 2304 1090 1214 5643830 5450858 98006 94966 165829 156250 1127994 5889057 927716 1199340 0 468356 2221539 7713003 2700 80000 2462895 80000 2465595 X 2125949 5231818 15590 15590 2141539 5247408 2221539 7713003 3105869 0 X 0 1 X 0 0 X 913798 1573348 1121969 4475795 8864752 16949662 913798 1573348 1121969 4475795 8864752 16949662 7595205 9354457 3478 -740 -56 -18970 -16288 16933374 0.55240 0.67440 X 0 INVESTMENT IN GENETX BIOTHERAPEUTICS LLC 465356 LOAN RECEIVABLE GENETX BIOTHERAPEUTICS LLC 3000 468356 8845782 96083 96083 8749699 0 8749699 5739913 96083 96083 5643830 0 5643830 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 3508505 3433755 74750 74303 2240 19540 3508505 3433755 74750 74303 2240 19540 96083 -21333 1 UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 2041953 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) 1261240 PRODUCTION OF A PIG MODEL UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 297390 IMAGING EQUIPMENT UPGRADE FOR THE ANALYSIS OF THERAPEUTIC PROTEINS BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 115(1) 10000 HUMANIZED MOUSE MODEL UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET SUITE 305 PHILADELPHIA PA 19104 231352685 115(1) 1492200 GENE THERAPY NEW YORK UNIVERSITY 70 WASHINGTON SQUARE S NEW YORK NY 10012 135562308 115(1) 94600 IDENTIFY MECHANISMS TO RESCUE LEARNING AND MEMORY BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVE BOSTON MA 02115 042774441 501(C)(3) 20889 CONDUCT PILOT FOR MODIFIED BAYLEY'S TEST 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 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. 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