2019-11-15T23:06:28-06:00 2018-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2018-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2019-11-15 1 SEAN MCMAHON P00350296 3123456200 2019-11-15 173.165.116.149 2019-11-15 23:04:31 CS P FB1BEE36FFA8700082452907943930F5C90D0054 FB1BEE36FFA8700082452907943930F5C90D0054 2018 2020-03-31 21:24:44Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 5437412 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 1 275 0 0 8790002 5243464 0 0 -18970 74011 -21333 -43082 8749699 5274393 5218272 2260991 0 0 57754 62046 0 0 85551 367804 625031 5643830 2948068 3105869 2326325 7713003 8901866 2465595 1328133 5247408 7573733 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 2260991 2260991 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS. 407021 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 2018, FAST BROUGHT TOGETHER 1,191 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, OVID THERAPEUTICS, ROCHE PHARMACEUTICALS, OTHER LEADING AS PHARMACEUTICAL COMPANIES AS WELL AS DR. ALLYSON BERENT, FAST'S CHIEF SCIENCE OFFICER. NON-SCIENTIFIC GUEST SPEAKERS INCLUDED COLIN FARRELL, JAI COURTNEY, RETTA SIRLEAF, ZACHARY LEVI, AND PAULA EVANS. IN ADDITION, AN EDUCATIONAL SUMMIT WAS HELD WITH GUEST EDUCATIONAL EXPERTS. 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. 2668012 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 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 1 13 0 1 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 0 0 1 1 CA IL FL MA CO WI IA MI X PAULA EVANS 8667830078 1512 ROYAL OAK ROAD DARIEN IL 60561 X PAULA EVANS CHAIPERSON 40.00 20.00 X X 0 145833 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/CHEIF FINANCIAL OFFICER 30.00 X X 0 0 0 KRISTY DIXON DIRECTOR 5.00 X 0 0 0 MEAGAN CROSS INTERNATIONAL LIAISON 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 10.00 X 0 0 0 SAM MAYDEW DIRECTOR 5.00 X 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 20.00 20.00 X 0 145833 0 JOHN SCHUELLTER DIRECTOR 10.00 X 0 0 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 KELLY DAVID DIRETOR 10.00 X 0 0 0 BEN O'CONNOR DIRECTOR 5.00 X 0 0 0 DEBORAH GUAGLIARDO FORMER OFFICER AND DIRECTOR 0.00 20.00 X 0 142300 0 0 433966 0 0 1 0 0 0 2972352 2271112 36090 5243464 80450 80450 34748 41187 -6439 -6439 -6439 78750 2972352 121832 -43082 -43082 5274393 0 0 30929 2260991 2260991 61250 30625 30625 796 398 398 106553 106553 17500 17500 51634 51634 2030 2030 23080 16879 3905 2296 390142 390142 5229 5229 COMPUTER AND SOFTWARE E 11657 11657 FILING FEES AND REGISTR 8400 8400 TELEPHONE AND TELECOMMU 5583 5583 POSTAGE AND DELIVERY 1370 1370 1853 1255 598 2948068 2668012 194505 85551 156250 1623071 5889057 7278795 1199340 468356 0 7713003 8901866 2700 154001 2462895 1174132 2465595 1328133 X 5231818 7558143 15590 15590 5247408 7573733 7713003 8901866 2326325 0 X 0 1 X 0 0 X 1573348 1121969 4475795 8864752 5322214 21358078 1573348 1121969 4475795 8864752 5322214 21358078 8447101 12910977 3478 -740 -56 -18970 74011 57723 21415801 0.60290 0.55240 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 5396225 121832 121832 5274393 0 5274393 3069900 121832 121832 2948068 0 2948068 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 3051102 2972352 78750 103548 2418 15866 3051102 2972352 78750 103548 2418 15866 121832 -43082 1 UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 165000 INDENTIFY LEAD RASO FOR IN VIVO STUDIES USING UBE3A DEFICIENT PRIMARY CELL CULTURES FROM RATS. TEXAS AGRILIFE RESEARCH 600 JOHN KIMBROUGH BLVD STE 512 TAMU COLLEGE STATION TX 77843 746000541 115(1) 810407 PRODUCTION OF A PIG MODEL BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 115(1) 212730 HUMANIZED MOUSE MODEL VANDERBILT UNIVERSITY MEDICAL CENTER 230 APPLETON PLACE NASHVILLE TN 37203 352528741 115(1) 397040 COMPARE AUDITORY EVOKED BRAIN RESPONSE POTENTIAL ASSOCIATED WITH LANGUAGE, LEARNING AND MEMORY DUKE UNIVERSITY CENTER FOR HEALTH MANAGEMENT 215 MORRIS STREET DURHAM NC 27701 560532129 115(1) 355618 OUTCOME MEASURE STUDY UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 320196 EVALUATE THE EFFECTS OF IGF2 ON ACOUSTIC COMMUNICATION IN AS RATS THAT ARE HIGHLY DEFICIENT 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. 0 0 1 0 0 0 0 0 0 PAULA EVANS CHAIPERSON 0 0 0 0 0 145833 0 0 0 0 0 145833 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 0 0 0 0 0 145833 0 0 0 0 0 145833 0 0 DEBORAH GUAGLIARDO FORMER OFFICER AND DIRECTOR 0 0 0 0 0 142300 0 0 0 0 0 142300 0 0 PART I, LINE 4C ON OCTOBER 19, 2018 GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, AWARDED PAULA EVANS, AN OFFICER AND DIRECTOR OF FAST, 51,429 PROFITS INTEREST UNITS IN GENETX IN EXCHANGE FOR SERVICES SHE IS PROVIDING FOR GENETX. PAULA EVANS MADE AN INTERNAL REVENUE CODE SECTION 83(B) ELECTION. THE FAIR MARKET VALUE OF THESE 51,429 PROFITS INTEREST UNITS AT THE TIME OF TRANSFER WAS $0. ON OCTOBER 19, 2018 GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, AWARDED ALLYSON BERENT, A DIRECTOR OF FAST, 51,429 PROFITS INTEREST UNITS IN GENETX IN EXCHANGE FOR SERVICES SHE IS PROVIDING FOR GENETX. ALLYSON BERENT MADE AN INTERNAL REVENUE CODE SECTION 83(B) ELECTION. THE FAIR MARKET VALUE OF THESE 51,429 PROFITS INTEREST UNITS AT THE TIME OF TRANSFER WAS $0. ON OCTOBER 19, 2018 GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, AWARDED DEBORAH GUAGLIARDO, A FORMER OFFICER AND DIRECTOR OF FAST, 25,714 PROFITS INTEREST UNITS IN GENETX IN EXCHANGE FOR SERVICES SHE IS PROVIDING FOR GENETX. DEBORAH GUAGLIARDO MADE AN INTERNAL REVENUE CODE SECTION 83(B) ELECTION. THE FAIR MARKET VALUE OF THESE 25,714 PROFITS INTEREST UNITS AT THE TIME OF TRANSFER WAS $0. X 3 36090 AVERAGE HIGH/LOW 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. FORM 990, PART VII, SECTION A, COLUMN(E) PAULA EVANS, AN OFFICER AND DIRECTOR OF FAST, RECEIVED A $145,833 GUARANTEED PAYMENT FROM GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, FOR SERVICES SHE PERFORMED FOR GENETX. ALLYSON BERENT, A DIRECTOR OF FAST, RECEIVED A $145,833 GUARANTEED PAYMENT FROM GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, FOR SERVICES SHE PERFORMED FOR GENETX. DEBORAH GUAGLIARDO, A FORMER OFFICER AND DIRECTOR OF FAST, RECEIVED A $142,300 GUARANTEED PAYMENT FROM GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, FOR SERVICES SHE PERFORMED FOR GENETX. GENETX BIOTHERAPEUTICS LLC 5020 CLARK ROAD 240 SARASOTA FL 34233 823674904 MEDICAL RESEARCH DE RELATED -3163747 17142733 0 1 0.90000 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 GENETX BIOTHERAPEUTICS LLC A 17171 2.31% AFR GENETX BIOTHERAPEUTICS LLC B 300000 CASH GENETX BIOTHERAPEUTICS LLC D 300000 CASH