2023-11-15T22:15:36-06:00 2022-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2022-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 40307 AUSTIN TX 78704 JOHN SCHLUETER CHAIRPERSON 8667830078 2023-11-15 1 JOHN SCHLUETER 999009999 0 SEAN MCMAHON P00350296 3123456200 2023-11-15 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z JOHN SCHLUETER PO BOX 40307 AUSTIN TX 78704 74153420 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. 11 10 8 350 0 0 5782149 4948249 4011 355507 -181056 47780150 -1627617 -606087 3977487 52477819 3910364 6744524 0 0 641663 929640 0 0 355998 1283338 1258857 5835365 8933021 -1857878 43544798 17749994 63075354 3354892 7259713 14395102 55815641 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 6744524 6744524 355507 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. 1252706 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. 7997230 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 1 1 0 0 0 1 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 28 0 8 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 10 0 0 1 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 X X 0 0 0 KELLY DAVID CO-VICE CHAIRPERSON 30.00 X X 0 0 0 KRISTY DIXON CO-VICE CHAIRPERSON AND TREASURER 25.00 2.00 X X 0 0 0 BEN O'CONNOR DIRECTOR 5.00 2.00 X X 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 40.00 40.00 X 0 176687 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 RYAN JACOB DIRECTOR 15.00 2.00 X 0 0 0 NORA XU DIRECTOR 5.00 X 0 0 0 AMELIA BEATTY SECRETARY 30.00 X 0 0 0 LAUREN HOFFER DIRECTOR 18.00 X 0 0 0 MEGAN CROSS CHIEF INFORMATION OFFICER 5.00 X 0 0 0 KENA RICHERT CFO 40.00 X 188000 0 0 ALANA NEWHOUSE PRESIDENT/CEO 40.00 X 50000 0 0 PAULA EVANS FORMER OFFICER AND DIRECTO 0.00 40.00 X 0 176687 0 238000 353374 0 1 1 1 1 AS2 BIOTHERAPEUTICS LLC 35 VILLAGE ROAD SUITE 100 MIDDLETON MA 01949 CONSULTING SERVICES 246108 MEDICUS ECONOMICS LLC 2 STONEHILL LN MILTON MA 02186 DEVELOP A PAYER AND REIMBURSEMENT STRATE 174740 2 2787000 2161249 100755 4948249 LICENSING REVENUE 900099 355507 355507 355507 508992 508992 15518426 52460463 14495550 6212181 1022876 46248282 47271158 47271158 361783 2787000 967870 -606087 -606087 52477819 355507 0 47174063 6744524 6744524 485109 291906 193203 408158 188130 105429 114599 36373 17886 11990 6497 258494 218635 39859 24665 24665 38460 38460 31 31 328839 290455 38384 11879 7930 3949 119811 71954 47857 14584 14584 2844 2844 EDUCATION AND AWARENESS 131520 131520 VIDEO AND PRODUCTION 97988 53700 0 44288 COMPUTER AND SOFTWARE E 75598 65523 10075 OTHER FUNDRAISING EXPEN 71339 71339 82805 37960 21886 22959 8933021 7997230 579793 355998 1369488 54308955 7165247 4283216 1665000 2316785 0 237629 43753 29169 29169 14584 6380671 1134755 1140419 779430 17749994 63075354 140148 226506 3193674 7033207 21070 0 3354892 7259713 X 14379645 55800184 15457 15457 14395102 55815641 17749994 63075354 43544798 -1756511 -367748 0 X 0 1 X 0 0 X 5322214 3793869 3364172 5669359 4948249 23097863 5322214 3793869 3364172 5669359 4948249 23097863 7388601 15709262 74011 135979 -428601 -181056 1531868 1132201 13298 55104 68402 24298466 363753 0.64650 0.61590 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 43753 29169 14584 14584 51650718 -1756511 967870 -788641 52439359 38460 38460 52477819 9862431 967870 967870 8894561 38460 38460 8933021 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. 1 0 0 0 0 0 0 0 0 0 UNITED KINGDOM THIS GRANT WAS AN EXTENSION OF THE DISRUPTIVE NUTRITION STUDY PERFORMED IN THE US AND FUNDED BY FAST. 324423 0 ARGENTINE CASA ANGELMAN PROJECT IN ARGENTINA 18000 0 0 0 0 0 0 0 PART I, LINE 2: THE FOUNDATION HAD ONE GRANT THAT WAS TRANSFERRED TO A SIMILAR FOUNDATION IN THE UNITED KINGDOM AS REQUESTED BY DONORS. PART III ACCOUNTING METHOD: ANNUAL GALA 3148783 2787000 361783 759333 28000 180537 3148783 2787000 361783 759333 28000 180537 967870 -606087 1 TEXAS A&M UNIVERSITY 400 HARVEY MITCHELL PARKWAY S STE 300 COLLEGE STATION TX 77843 746000541 115(1) 277778 0 TRANSLATIONAL RESEARCH IN PIG MODEL OF AS YALE UNIVERSITY PO BOX 2038 NEW HAVEN CT 06521 060646973 115(1) 233299 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 UNIVERSITY OF PENNSYLVANIA PO BOX 785541 PHILADELPHIA PA 19178 231352685 115(1) 115121 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. NORTH CAROLINA STATE UNIVERSITY 2601 WOLF VILLAGE WAY SUITE 240 RALEIGH NC 27695 566000756 115(1) 173873 0 BANDODKAR LAB HUMAN ORGANOID ARRAYS TO STUDY 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. X X 0 0 0 0 0 0 0 0 0 KENA RICHERT CFO 188000 0 0 0 0 0 0 0 0 0 188000 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 0 135913 0 40774 0 0 0 0 0 0 0 176687 0 0 PAULA EVANS FORMER OFFICER AND DIRECTO 0 135913 0 40774 0 0 0 0 0 0 0 176687 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 100755 FAIR MARKET VALUE 0 0 0 FORM 990, PART VI, SECTION A, LINE 4 THE ORGANIZATION AMENDED THEIR BY-LAWS IN 2022 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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