2020-09-24T12:33:09-05:00 2019-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2019-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2020-09-22 1 SEAN MCMAHON P00350296 3123456200 2020-09-22 173.165.116.149 2020-09-22 10:12:35 CD P 7CCE6628096AC9ADBCFA2189F6681F4D6EDB24E3 E6902896E247836D5255982CBDB2EDD70AAD209E 2019 2021-01-29 14:40:06Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 6314576 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 1 285 0 0 5243464 3815019 0 0 74011 135979 -43082 1788185 5274393 5739183 2260991 4080080 0 0 62046 69434 0 0 183058 625031 412365 2948068 4561879 2326325 1177304 8901866 12005469 1328133 3254432 7573733 8751037 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 4080080 4080080 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS IN THE FORM OF PROVIDING GRANTS TO UNIVERSITIES TO PERFORM RESEARCH AND TESTING. 214803 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 2019, FAST BROUGHT TOGETHER 1,158 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 DR. JIM WILSON (UNIVERSITY OF PENNSYLVANIA), JOHN CROWLEY (AMICUS THERAPEUTICS), DR. AMIT RAKHIT (OVID THERAPEUTICS), DR. EDWIN WEEBER (PTC THERAPEUTICS), DR. JOSEPH ANDERSON (UNIVERSITY OF CALIFORNIA - DAVIS), DR. MICHELLE KRISHNAN (ROCHE PHARMACEUTICALS), DR. FRANK BENNETT (IONIS PHARMACEUTICALS), DR. DUIS (VANDERBILT UNIVERSITY), LARRY GLASS (NEUREN PHARMACEUTICALS), DR. SCOTT STROMATT (GENETX THERAPEUTICS), AND KEYNOTE SPEAKER DR. EMIL KAKKIS (ULTRAGENYX PHARMACEUTICAL) AS WELL AS DR. ALLYSON BERENT, FAST'S CHIEF SCIENCE OFFICER. NON-SCIENTIFIC GUEST SPEAKERS INCLUDED COLIN FARRELL, JAI COURTNEY, RETTA SIRLEAF, EVANGELINE LILLY, AND PAULA EVANS. IN ADDITION, AN EDUCATIONAL SUMMIT WAS HELD WITH GUEST EDUCATIONAL EXPERTS INCLUDING LARA BEAUCHAMP, CAROLYN WOEBER, ERIN DOLAN, BARBARA CANNON, AMY EAPEN, KELLY BEINS, AND CAROLINE MUSSELWHITE. 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. 4294883 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 1 0 0 1 0 0 1 0 1 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 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 MO FL NY WI CA TX MN IL WA MA MI VA PA NJ OH CO IA X X PAULA EVANS 8667830078 1512 ROYAL OAK ROAD DARIEN IL 60561 X PAULA EVANS CHAIRPERSON 20.00 20.00 X X 0 368750 0 MAIDDY DUNIGAN VICE CHAIRPERSON 30.00 X X 0 0 0 SHARON CLARIDGE FORMER SECRETARY 5.00 X X 0 0 0 KENA RICHERT CHIEF FINANCIAL OFFICER/TREASURER 30.00 X X 0 0 0 KRISTY DIXON SECRETARY 5.00 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 SAM MAYDEW DIRECTOR 5.00 X 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 20.00 20.00 X 0 368750 0 JOHN SCHUELLTER DIRECTOR 10.00 X 0 0 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 KELLY DAVID DIRECTOR 20.00 X 0 0 0 BEN O'CONNOR DIRECTOR 5.00 X 0 0 0 CHLOE KNOUFF DIRECTOR 22.50 X 0 0 0 DAVID GURZICK DIRECTOR 7.50 X 0 0 0 DEBBIE GUAGLIARDO FORMER OFFICER AND DIRECTOR 0.00 20.00 X 0 325160 0 0 1062660 0 0 1 1 0 0 21150 3793869 9140 3815019 135974 135974 9145 9140 5 5 5 385874 21150 566253 -180379 -180379 NET CHANGE IN VALUE OF 541700 1968564 1968564 1968564 5739183 1968564 0 -44400 4028080 4028080 52000 52000 64500 32250 32250 4934 2467 2467 27047 27047 15351 10299 5052 10000 10000 145241 46328 98913 2131 2131 26710 8715 17995 829 829 BANK AND MERCHANT ACCOU 64006 350 63656 EQUIPMENT RENTAL 46179 46179 SCHOLARSHIPS FOR TRAVEL 29490 29490 EDUCATION AND AWARENESS 20743 20743 24638 22144 2494 4561879 4294883 83938 183058 1623071 2042555 7278795 7994350 1968564 8901866 12005469 154001 57057 1174132 3197375 1328133 3254432 X 7558143 8735447 15590 15590 7573733 8751037 8901866 12005469 1177304 0 X 0 1 X 1 0 X 1121969 4475795 8864752 5322214 3793869 23578599 1121969 4475795 8864752 5322214 3793869 23578599 8883254 14695345 -740 -56 -18970 74011 135979 190224 23768823 0.61830 0.60290 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1968564 F 1968564 6305436 566253 566253 5739183 0 5739183 5128132 566253 566253 4561879 0 4561879 PART XI, LINE 2D - OTHER ADJUSTMENTS: NET LOSS 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 0 0 0 0 0 0 0 0 0 AUSTRALIA THIS GRANT WAS AN EXTENSION OF THE DISRUPTIVE NUTRITION STUDY PERFORMED IN THE US AND FUNDED BY FAST A FEW YEARS AGO. 52000 0 0 0 0 0 0 PART I, LINE 2: THE FOUNDATION ONLY HAD ONE GRANT THAT WAS TRANSFERRED TO A SIMILAR FOUNDATION IN AUSTRALIA AS REQUESTED BY A DONOR. PART III ACCOUNTING METHOD: ANNUAL GALA 407024 21150 385874 256558 31147 278548 407024 21150 385874 256558 31147 278548 566253 -180379 1 UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 112041 TO EVALUATE ASO AND IGF2 IN RAT MODEL BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA HOUSTON TX 77030 741613878 115(1) 163700 HUMANIZED MOUSE MODEL DUKE UNIVERSITY CENTER FOR HEALTH MANAGEMENT 215 MORRIS STREET DURHAM NC 27701 560532129 115(1) 9935 OUTCOME MEASURE STUDY UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 1696897 EVALUATE THE EFFECTS OF IGF2 AND IGF2RL IN AS RAT MODEL AS WELL AS TO EVALUATE THE BEHAVIORAL RESCUE IN A RAT MODEL OF AS AFTER TREATMENT WITH A RAT SPECIFIC ASO. UNIVERSITY OF PENNSYLVANIA PO BOX 785541 PHILADELPHIA PA 19178 231352685 115(1) 838866 CLINICAL CANDIDATE DEVELOPMENT OF AN AAV GENE THERAPY FOR ANGELMAN SYNDROME NEW YORK UNIVERSITY 105 EAST 17TH STREET NEW YORK NY 10003 135562308 115(1) 145125 EVALUATE THE PHYSIOLOGICAL ROLE OF INSULIN-LIKE GROWTH FACTOR 2 IN LEARNING AND MEMORY IN RODENT MODELS OF VARIOUS AGES THEREBY STENGTHENING THE PROOF OF PRINCIPLE TO RESCUE THE AS PHENOTYPES OF BEHAVIOR, SEIZURES, AND ATAXIA. TEXAS A&M UNIVERSITY 400 HARVEY MITCHELL PARKWAY S STE 300 COLLEGE STATION TX 77843 746000541 115(1) 1061516 TRANSLATIONAL RESEARCH IN PIG MODEL OF AS 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 0 0 0 0 0 0 0 PAULA EVANS CHAIRPERSON 0 368750 0 0 0 0 0 0 0 0 0 368750 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 0 368750 0 0 0 0 0 0 0 0 0 368750 0 0 DEBBIE GUAGLIARDO FORMER OFFICER AND DIRECTOR 0 325160 0 0 0 0 0 0 0 0 0 325160 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 AS WELL AS ON THE FOUNDATION'S WEBSITE. FORM 990, PART VII, SECTION A, COLUMN(E) PAULA EVANS, AN OFFICER AND DIRECTOR OF FAST, RECEIVED A $368,750 GUARANTEED PAYMENT FROM GENETX BIOTHERAPEUTICS LLC ("GENETX"), A RELATED ORGANIZATION, FOR SERVICES SHE PERFORMED FOR GENETX. ALLYSON BERENT, A DIRECTOR OF FAST, RECEIVED A $368,750 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 -8202833 24283815 0 1 0.58960 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 GENETX BIOTHERAPEUTICS LLC A 17443 2.31% AFR GENETX BIOTHERAPEUTICS LLC B 13562177 DEEMED CONTRIBUTION