2022-11-15T15:18:28-06:00 2021-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2021-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 40307 AUSTIN TX 78704 JOHN SCHLUETER CHAIRPERSON 8667830078 2022-11-15 1 JOHN SCHLUETER 999009999 SEAN MCMAHON P00350296 3123456200 2022-11-15 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z X JOHN SCHLUETER PO BOX 608 DOWNERS GROVE IL 60515 27289390 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 AGGRESSIVE RESEARCH AGENDA, EDUCATION, AWARENESS, AND ADVOCACY. 12 11 6 85 0 0 3391715 5782149 8096 4011 -436697 -181056 6394540 -1627617 9357654 3977487 2401977 3910364 0 0 296128 641663 0 0 220829 354290 1283338 3052395 5835365 6305259 -1857878 18338531 17749994 2419923 3354892 15918608 14395102 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 3910364 3910364 4011 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. 912827 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. 314409 THE SCIENCE SYMPOSIUM HAS THREE DAYS OF EVENTS:1) TRANSLATIONAL RESEARCH SYMPOSIUM AND ABOM MEETING. THIS EVENT IS FOR SCIENTISTS, INDUSTRY PARTNERS AND MEDICAL PROFESSIONALS ONLY TO DISCUSS THE LATEST RESEARCH ADVANCEMENTS AND FOCUS ON COLLABORATIVE EFFORTS TO ACCELERATE RESEARCH.2) GLOBAL SCIENCE SUMMIT: FOCUS ON ANGELMAN SYNDROME TRANSLATIONAL RESEARCH. THIS IS A PRESENTATION OF MULTIPLE RESEARCHERS IN THE AS SPACE TO THE ANGELMAN PARENT COMMUNITY. 3) GLOBAL SCIENCE SUMMIT: FOCUS ON CLINICAL TRIALS. THIS EVENT IS A PRESENTATION BY MULTIPLE PHARMACEUTICALS TO PARENTS ON THE CURRENT STAGE OF THEIR RESPECTIVE THERAPEUTICS AND NEXT STEPS FOR AS PARENTS. 18082 THE INTERNATIONAL ANGELMAN SYNDROME RESEARCH COUNCIL (INSYNC-AS) HELD ITS FIRST MEETING VIRTUALLY ON JULY 9, 2021. A JOINT PROJECT OF THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST) AND THE SIMONS FOUNDATION AUTISM RESEARCH INITIATIVE (SFARI), INSYNC-AS LAUNCHED WITH THE GOAL TO DRIVE ACCELERATION OF THE TRANSLATIONAL RESEARCH LANDSCAPE RELATED TO TREATMENTS FOR ANGELMAN SYNDROME (AS) AND OTHER NEURODEVELOPMENTAL DISORDERS (NDDS). THE MEETING AIMED TO BRING TOGETHER EXPERTS WITH PRECLINICAL, CLINICAL, REGULATORY AND INDUSTRY PERSPECTIVES TO DISCUSS NEW WAYS TO ACCELERATE THIS INITIATIVE INTO SUCCESSFUL THERAPIES. THESE EFFORTS WERE ALSO AIMING TO FORM A FOUNDATION TO SERVE AS A MODEL FOR OTHER RARE NDDS. 18082 5155682 1 1 0 0 0 0 0 0 0 0 1 1 0 1 1 0 1 1 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 0 0 0 1 11 0 6 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 11 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 1 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 JOHN SCHUELLTER CHAIRPERSON 30.00 0.00 X X 0 0 0 KELLY DAVID CO-VICE CHAIRPERSON 30.00 0.00 X X 0 0 0 KRISTY DIXON SECRETARY 25.00 0.00 X X 0 0 0 BEN O'CONNOR TREASURER 5.00 0.00 X X 0 0 0 SAM MAYDEW DIRECTOR 5.00 0.00 X 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 40.00 40.00 X 0 325000 0 ROY AZOUT DIRECTOR 5.00 0.00 X 0 0 0 RYAN JACOBS DIRECTOR 15.00 0.00 X 0 0 0 NORA XU DIRECTOR 5.00 0.00 X 0 0 0 AMELIA BEATTY DIRECTOR 30.00 0.00 X 0 0 0 LAUREN HOFFER DIRECTOR 18.00 0.00 X 0 0 0 KENA RICHERT CFO 40.00 0.00 X X 152083 0 0 MEGAN CROSS DIRECTOR 5.00 0.00 X 0 0 0 MAIDDY DUNIGAN FORMER OFFICER AND COO 40.00 0.00 X 152083 0 0 PAULA EVANS FORMER OFFICER AND DIRECTO 0.00 20.00 X 0 325000 0 304166 650000 0 2 1 1 1 AKIRA PRODUCTION 2720 S HIGHLAND AVENUE 553 LOMBARD IL 60148 RELATED TO ANNUAL GALA PLANNING AND PROD 414685 SAUL EWING ARSTEIN & LEHR LLP 1500 MARKET STREET FLOR 38 PHILADELPHIA PA 19102 LEGAL FEES FOR 2021 110177 2 3873959 55104 1853086 57686 5782149 LICENSING REVENUE 900099 4011 4011 4011 115898 115898 22899854 23196808 -296954 -296954 -296954 441249 3873959 115095 326154 326154 NET CHANGE IN VALUE OF INVESTMENT 541700 -1953771 -1953771 -1953771 3977487 -1949760 0 145098 3910364 3910364 304166 190104 114062 300539 83084 155917 61538 36958 19965 12280 4713 169858 99239 70619 16952 16952 53211 53211 5438 5438 143829 119829 24000 5557 5557 1770 262 1508 14584 14584 4351 4351 EDUCATION AND AWARENESS 460055 460055 COMMUNITY OUTREACH 230190 230190 COMPUTER AND SOFTWARE E 75478 19307 56171 OTHER FUNDRAISING EXPEN 38352 38352 63713 22830 6336 34547 5835365 5155682 458854 220829 2752276 1369488 6837392 7165247 25050 1665000 0 43753 14584 0 29169 8652192 6380671 71621 1140419 18338531 17749994 29675 140148 2366068 3193674 24180 21070 2419923 3354892 X 15872918 14379645 45690 15457 15918608 14395102 18338531 17749994 -1857878 334372 0 X 0 1 X 1 0 X 8864752 5322214 3793869 3364172 5669359 27014366 8864752 5322214 3793869 3364172 5669359 27014366 10592221 16422145 -18970 74011 135979 -428601 -181056 -418637 13298 55104 68402 26664131 8246 0.61590 0.61980 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 43753 14584 29169 29169 169500 F 6211171 F 6380671 DIVIDENDS RECEIVABLE 24687 INTEREST RECEIVABLE ON NOTE 15732 CONVERTIBLE NOTE RECEIVABLE 1100000 1140419 DERIVATIVE CONTRACTS SOLD SHORT AT FAIR MARKET VALUE 8000 PAYROLL LIABILITIES 13070 21070 4373743 334372 61884 396256 3977487 0 3977487 5897249 61884 61884 5835365 0 5835365 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. ANNUAL GALA 4315208 3873959 441249 115095 4315208 3873959 441249 115095 115095 326154 1 DUKE UNIVERSITY CENTER FOR HEALTH MANAGEMENT 215 MORRIS STREET DURHAM NC 27701 560532129 115(1) 77875 0 OUTCOME MEASURE STUDY UNIVERSITY OF CALIFORNIA DAVIS ONE SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 1093891 0 TRANSLATIONAL ANALYSIS OF GAIT AS A PRIMARY OUTCOME MEASURE IN ANGELMAN SYNDROME AND IND ENABLING STUDIES. YALE UNIVERSITY PO BOX 2038 NEW HAVEN CT 06521 060646973 115(1) 579804 0 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) 149661 0 A HUMAN PLATFORM TO EFFICIENTLY STUDY CLASS 1 DELETED GENES UNIVERSITY OF PENNSYLVANIA PO BOX 785541 PHILADELPHIA PA 19178 231352685 115(1) 458872 0 A. THE UBE3A ANTISENSE TRANSCRIPT (UBE3A-AS) IS A LONG NON-CODING MRNA THAT SILENCES EXPRESSION OF THE PATERNAL UBE3A GENE IN NEURONS. INTERRUPTION OF THIS IMPRINTING PHENOMENON CAN BE DONE THROUGH ASOS, CRISPR-GRNA OR OTHER TECHNOLOGIES LIKE MICRORNA (MIRNA). THIS PROJECT IS AIMING TO DEVELOP A STRATEGY TO SUPPRESS THE UBE3A-AS IN THE MOUSE MODEL OF AS USING MIRNAS. ADVANTAGES TO MIRNA ARE THAT THEY ARE SUBJECT TO ENDOGENOUS CELLULAR PROCESSING AND REGULATION, WHICH CAN HELP CIRCUMVENT ISSUES RELATED TO OVEREXPRESSION OF EXOGENOUS GENETIC MATERIAL (WITH UBE3A REPLACEMENT), AND THE NEED FOR REPEATED REDOSING (WITH ASOS). MIRNA IS THOUGHT TO BE ADVANTAGEOUS OVER SHRNA DUE TO ENDOGENOUS CELLULAR PROCESSING AND REGULATION COMPARED TO OVEREXPRESSION YOU COULD GET WITH SHRNA. UNIVERSITY OF COLORADO DENVER 13001 E 17TH PLACE ROOM W114 AURORA CO 80045 846000055 115(1) 383163 0 THE AIM OF THIS PROJECT IS TO CREATE CARE PROTOCOLS FOR THE EMERGENCY AND URGENT MANAGEMENT OF INDIVIDUALS WITH AS AND UTILIZE PROSPECTIVE AVAILABILITY OF AN AS-EXPERT PROVIDER TO UNDERSTAND THE UTILITY OF THE PROTOCOLS. TO TEST THESE PROTOCOLS AND PERFORM QUALITY IMPROVEMENT IN THE MANAGEMENT OF AS, AN EMERGENCY LINE AVAILABLE 24 HOURS A DAY AND 7 DAYS PER WEEK WILL BE AVAILABLE TO FAMILIES TO CALL TO REACH AN AS-SPECIALIST FOR PROVIDER-TO- PROVIDER CONTACT. NORTH CAROLINA STATE UNIVERSITY 2601 WOLF VILLAGE WAY SUITE 240 RALEIGH NC 27695 566000756 115(1) 173139 0 THE OBJECTIVE OF THIS WORK IS TO ADDRESS THIS CHALLENGE DIRECTLY THROUGH THE GENERATION OF TWO TYPES OF HUMAN STEM CELL LINES THAT CONTAIN EITHER 'UNIVERSAL LANDING PADS' THAT CAN BE USED BY THE ANGELMAN RESEARCH COMMUNITY OR EPIGENONE EDITORS THAT WILL CONVERT A WILD TYPE MATERNAL PWS-AS LOCUS INTO ONE THAT RESEMBLES PATERNAL IMPRINTING PATTERNS SIMILAR TO THAT IN ICD AND UPD FORMS OF ANGELMAN SYNDROME. THESE ENGINEERED CELL LINES WILL ENABLE RESEARCHERS TO EFFICIENTLY INTRODUCE DIVERSE NUMBERS AND COMBINATIONS OF GENES AT TUNABLE EXPRESSION LEVELS, WITHOUT HAVING TO USE INEFFICIENT GENOME EDITING TECHNOLOGIES FOR EACH NEW GENE THEY WANT TO STUDY. IN PARTICULAR, THIS WORK WILL AIM TO PROVIDE HUMAN STEM CELL LINES THAT CAN BE RAPIDLY USED BY MOST OTHER INVESTIGATORS WITH BASIC CELL CULTURE EQUIPMENT TO GENERATE MODELS OF IMPRINTING CENTER DEFECTS AND UNIPARENTAL DISOMY. 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 ALLYSON BERENT CHIEF SCIENCE OFFICER 0 250000 0 75000 0 0 0 0 0 0 0 325000 0 0 PAULA EVANS FORMER OFFICER AND DIRECTO 0 250000 0 75000 0 0 0 0 0 0 0 325000 0 0 KENA RICHERT CFO 152083 0 0 0 0 0 0 0 0 0 152083 0 0 0 MAIDDY DUNIGAN FORMER OFFICER AND COO 152083 0 0 0 0 0 0 0 0 0 152083 0 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. X 3 57686 FAIR MARKET VALUE 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 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. 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