2021-10-15T22:35:36-05:00 2020-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2020-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 JOHN SCHLUETER CHAIRPERSON 8667830078 2021-10-15 1 JOHN SCHLUETER 999009999 SEAN MCMAHON P00350296 3123456200 2021-10-15 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z JOHN SCHLUETER PO BOX 608 DOWNERS GROVE IL 60515 20286064 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. 15 15 3 125 0 0 3815019 3391715 0 8096 135979 -436697 1788185 6394540 5739183 9357654 4080080 2401977 0 0 69434 296128 0 0 175248 412365 354290 4561879 3052395 1177304 6305259 12005469 18338531 3254432 2419923 8751037 15918608 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 2401977 2401977 8096 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. 263790 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. 2665767 1 1 0 0 0 0 0 0 0 0 0 1 0 0 1 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 25 0 3 1 0 0 0 0 0 0 0 0 0 0 0 0 X 15 15 0 0 1 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 0 1 1 MO FL NY WI CA TX MN IL WA MA MI VA PA NJ OH CO IA X X KENA RICHERT 8667830078 1151 STONE MOUNTAIN DRIVE MARBLE FALLS TX 78654 PAULA EVANS CHAIRPERSON 20.00 20.00 X X 0 325000 0 MAIDDY DUNIGAN VICE CHAIRPERSON/CEO 40.00 X X 104167 0 0 KENA RICHERT CHIEF FINANCIAL OFFICER/TR 40.00 X X 104167 0 0 KRISTY DIXON SECRETARY 5.00 X 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 325000 0 JOHN SCHUELLTER DIRECTOR 10.00 X 0 0 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 KELLY DAVID DIRECTOR 10.00 X 0 0 0 BEN O'CONNOR DIRECTOR 5.00 X 0 0 0 CHLOE KNOUFF DIRECTOR 10.00 X 0 0 0 DAVID GURZICK DIRECTOR 5.00 X 0 0 0 AMELIA BEATTY DIRECTOR 15.00 X 0 0 0 LAUREN HOFFER DIRECTOR 18.00 X 0 0 0 DEBBIE GUAGLIARDO FORMER OFFICER AND DIRECTO 0.00 20.00 X 0 251250 0 208334 901250 0 2 1 1 0 0 3391715 10220 3391715 LICENSING REVENUE 900099 8096 8096 8096 65615 65615 10268270 10770582 -502312 -502312 -502312 355990 157828 198162 198162 NET CHANGE IN VALUE OF INVESTMENT 541700 6196378 6196378 6196378 9357654 6204474 0 -238535 2368927 2368927 33050 33050 208334 130209 78125 66750 33375 33375 21044 12514 8530 43885 21520 22365 13500 13500 14307 14307 190858 63845 127013 926 926 90 90 2371 2371 BANK AND MERCHANT ACCOU 41214 470 40744 COMPUTER AND SOFTWARE E 20321 20321 TELEPHONE AND TELECOMMU 8419 8419 OTHER FUNDRAISING EXPEN 7401 7401 10998 2327 8671 3052395 2665767 211380 175248 2042555 2752276 7994350 6837392 0 25050 1968564 8652192 0 71621 12005469 18338531 57057 29675 3197375 2366068 0 24180 3254432 2419923 X 8735447 15872918 15590 45690 8751037 15918608 12005469 18338531 6305259 862312 0 X 0 1 X 1 0 X 4475795 8864752 5322214 3793869 3364172 25820802 4475795 8864752 5322214 3793869 3364172 25820802 9955489 15865313 -56 -18970 74011 135979 -428601 -237637 13298 13298 25596463 4235 0.61980 0.61830 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 487250 F 8164942 F 8652192 DERIVATIVE CONTRACTS SOLD SHORT AT FAIR MARKET VALUE 24180 24180 10363487 862312 143521 1005833 9357654 0 9357654 3195916 143521 143521 3052395 0 3052395 PART XI, LINE 2D - OTHER ADJUSTMENTS: DIRECT EXPENSES FROM FUNDRAISING EVENTS (PAGE 9, PART VIII, LINE 8B) INVESTMENT ADVISORY FEES SHOWN NET OF DIVIDENDS AND INTEREST ON FINANCIALS PART XII, LINE 2D - OTHER ADJUSTMENTS: DIRECT EXPENSES FROM FUNDRAISING EVENTS (PAGE 9, PART VIII, LINE 8B) INVESTMENT ADVISORY FEES SHOWN NET OF DIVIDENDS AND INTEREST ON FINANCIALS 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. 15050 ARGENTINA CASA ANGELMAN PROJECT IN ARGENTINA 18000 0 0 0 0 0 0 PART I, LINE 2: THE FOUNDATION HAD TWO GRANTS THAT WERE TRANSFERRED TO SIMILAR FOUNDATIONS IN AUSTRALIA AND ARGENTINA AS REQUESTED BY DONORS. PART III ACCOUNTING METHOD: VIRTUAL GALA 355990 0 355990 0 0 0 20080 137748 355990 355990 20080 137748 157828 198162 1 DUKE UNIVERSITY CENTER FOR HEALTH MANAGEMENT 215 MORRIS STREET DURHAM NC 27701 560532129 115(1) 9092 OUTCOME MEASURE STUDY UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 296592 TRANSLATIONAL ANALYSIS OF GAIT AS A PRIMARY OUTCOME MEASURE IN ANGELMAN SYNDROME TEXAS A&M UNIVERSITY 400 HARVEY MITCHELL PARKWAY S STE 300 COLLEGE STATION TX 77843 746000541 115(1) 37524 TRANSLATIONAL RESEARCH IN PIG MODEL OF AS YALE UNIVERSITY PO BOX 2038 NEW HAVEN CT 06521 060646973 115(1) 1726398 GENERATION AND CHARACTERIZATION OF A NEW AS MOUSE MODEL THAT RECAPITULATES THE LARGE DELETION OF HUMAN 15Q11-Q13 AND A CONTROL LINE THAT CARRIES A DELETION OF ALL GENES IN 15Q11-Q13 BUT UBE3A NORTH CAROLINA STATE UNIVERSITY 1450 FAIRCHILD RD WINSTON SALEM NC 27105 270080644 115(1) 299321 A HUMAN PLATFORM TO EFFICIENTLY STUDY CLASS 1 DELETED GENES 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 X 0 0 0 0 0 0 0 0 0 PAULA EVANS CHAIRPERSON 0 325000 0 0 0 0 0 0 0 0 0 325000 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 0 325000 0 0 0 0 0 0 0 0 0 325000 0 0 DEBBIE GUAGLIARDO FORMER OFFICER AND DIRECTO 0 251250 0 0 0 0 0 0 0 0 0 251250 0 0 PART I, LINE 3 THE BOARD OBTAINED A WRITTEN COMPENSATION ANALYSIS FROM WILLIS TOWERS WATSON, WHO SPECIALIZES IN EXECUTIVE COMPENSATION ASSESSMENTS. THE BOARD REVIEWED THIS COMPENSATION ANALYSIS, THE JOB DESCRIPTION, AND THE CURRENT NEEDS OF THE FOUNDATION TO SET THE COMPENSATION LEVELS FOR THE COO AND CFO POSITION. FORM 990, PART VI, SECTION A, LINE 4 THE FOUNDATION AMENDED ITS BY-LAWS ON AUGUST 11, 2020 INCREASING THE NUMBER OF VOTING MEMBERS FROM 14 TO 16 AND OTHER MINOR CHANGES. 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 15A THE BOARD OBTAINED A WRITTEN COMPENSATION ANALYSIS FROM WILLIS TOWERS WATSON, WHO SPECIALIZES IN EXECUTIVE COMPENSATION ASSESSMENTS. THE BOARD REVIEWED THIS COMPENSATION ANALYSIS, THE JOB DESCRIPTION, AND THE CURRENT NEEDS OF THE FOUNDATION TO SET THE COMPENSATION LEVELS FOR THE COO AND CFO POSITION. 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. GENETX BIOTHERAPEUTICS LLC 5020 CLARK ROAD 240 SARASOTA FL 34233 823674904 MEDICAL RESEARCH DE RELATED -8550581 30376222 0 1 0.58960 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 GENETX BIOTHERAPEUTICS LLC B 14746959 DEEMED CONTRIBUTION