2025-09-29T20:24:06-05:00 2024-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2024-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 5900 BALCONES DRIVE 8754 AUSTIN TX 78731 RYAN JACOB CHAIRPERSON 8667830078 2025-09-29 1 1 STEVEN LOMBARDO P01584928 3123456200 2025-09-27 2024 2025-03-06 01:10:19Z X RYAN JACOB 5900 BALCONES DRIVE 8754 AUSTIN TX 78731 9721341 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 12 11 291 0 0 3866276 3723744 0 0 2734710 1677094 -75171 -12578 6525815 5388260 18691164 3698573 0 0 1374639 2926752 0 0 398605 3163355 3766644 23229158 10391969 -16703343 -5003709 58430242 44915881 18609384 4707817 39820858 40208064 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 3698573 3698573 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. 5532984 0 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. 9231557 1 1 0 0 0 0 0 0 0 0 1 1 1 0 1 0 1 1 0 0 0 0 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 34 0 11 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 0 0 1 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 1 1 1 AL AK AR CA CO CT FL GA HI IL KS KY ME MD MI MN MS NV NH NJ NY NM NC ND OH OK OR PA RI SC TN VA WA WV X X KENA PEARSON 8667830078 5900 BALCONES DRIVE 8754 AUSTIN TX 78731 RYAN JACOB CHAIRPERSON 18.00 4.00 X X 0 0 0 MICHAEL HANRAHAN VICE CHAIRPERSON AND TR 10.00 2.00 X X 0 0 0 GUY SHAPIRAL TRESURER 15.00 X X 0 0 0 AMELIA BEATTY SECRETARY 15.00 2.00 X 0 0 0 KARLY WARNER DIRECTOR 5.00 X 0 0 0 JOHN SCHLUETER DIRECTOR 15.00 X 0 0 0 KELLY DAVID DIRECTOR 10.00 X X 0 0 0 BEN O'CONNOR DIRECTOR 5.00 2.00 X 0 0 0 ROY AZOUT DIRECTOR 5.00 X 0 0 0 LAUREN HOFFER DIRECTOR 5.00 X 0 0 0 NORA XU DIRECTOR 5.00 X 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 2.00 40.00 X X 0 509945 0 RYAN K FISCHER CHIEF OPERATING OFICER 40.00 X 286130 0 0 ALANA NEWHOUSE PRESIDENT/CEO 40.00 X 245000 0 0 KENA PEARSON CHIEF FINANCIAL OFFICER 40.00 X 232568 0 0 MICHELE GOLOMBUSKI CHIEF DEVELOPMENT OFFICER 40.00 X 210068 0 0 973766 509945 0 4 1 1 0 FAEGRE DRINKER BIDDLE & REATH LLP 1500 K ST NW STE 1100 WASHINGTON DC 20005 ADVOCACY FIRM 324783 VAN NESS CREATIVE STRATEGIES LLC ONE HUNTINGTON QUADRANGLE STE 4S05 MELVILLE NY 11747 MARKETING 297590 CHOATE HALL & STEWART LLP TWO INTERNATIONAL PLACE BOSTON MA 02110 LEGAL SERVICES 204561 MAIDDY DUNIGAN 5135 KINGWELL CIR OVIEDO FL 32765 CONULTING 183985 JESSICA DOBSON WEAVER 3207 MEREDITH ST AUSTIN TX 78703 BOARD CONSULTANT 131250 6 432376 3291368 3723744 1474934 1474934 4160540 3958380 202160 202160 202160 322583 374701 -52118 -52118 MISCELLANEOUS 900099 39540 39540 39540 5388260 39540 0 1624976 3698573 3698573 763697 421902 276555 65240 2030293 1675728 196539 158026 132762 99673 22480 10609 798599 752775 45824 71481 71481 429106 391161 25779 12166 34809 26133 5894 2782 126080 92380 16850 16850 367048 367048 26094 13047 13047 COMMUNITY OUTREACH GALA 1124103 1124103 0 0 COMPUTER AND SOFTWARE E 257297 207764 33652 15881 EDUCATION AND AWARENESS 187558 187558 0 0 CAN EXPENSES 168154 84077 84077 176315 102682 53706 19927 10391969 9231557 761807 398605 701529 1121744 47521755 33599 2219320 415000 0 773423 0 26029 43753 43753 0 0 5674693 30923753 2244319 11574812 68626 47521 58430242 44915881 327900 730241 18215653 3932850 65831 44726 18609384 4707817 X 39805401 40192607 15457 15457 39820858 40208064 58430242 44915881 -5003709 1359407 4031508 0 X 0 1 X 1 0 X 3364172 5669359 4948249 986878 3723744 18692402 3364172 5669359 4948249 986878 3723744 18692402 3099019 15593383 -428601 -181056 1531868 1969313 1474934 4366458 13298 55104 16232 39540 124174 23183034 686336 0.67260 0.57300 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 43753 43753 0 0 INVESTMENTS AT FAIR MARKET VALUE 24642403 F INVESTMENTS AT NET ASSET VALUE 6281350 F 30923753 INVESTMENT IN TMX 3191622 F INVESTMENT IN MAVRIX 2000000 F INVESTMENT IN COURAGENE INC. 1000000 C INVESTMENT IN AS2 BIO 383109 F INVESTMENT IN COURAGEAS 5000081 C 11574812 OPERATING LEASE LIABILITIES 44726 44726 7050887 1359407 374701 1734108 5316779 71481 71481 5388260 10695189 374701 374701 10320488 71481 71481 10391969 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 322583 322583 374701 322583 322583 374701 374701 -52118 1 DUKE UNIVERSITY PO BOX 602651 CHARLOTTE NC 28260 560532129 115(1) 317848 0 FT2018-005 AMENDED: GPIC-COMM UNIVERSITY OF PENNSYLVANIA PO BOX 785541 PHILADELPHIA PA 19178 231352685 115(1) 5860869 0 UPENN 2023: RESEARCH, COLLABORATION & LICENSE AGREEMENT KECK GRADUATE INSTITUTE OF APPLIED LIFE SCIENCES 535 WATSON DRIVE CLAREMONT CA 91711 954625327 115(1) 125000 0 FT2022-002: TARGETING ANGELMAN SYNDROME THERAPEUTICS TO THE BRAIN UTILIZING NOVEL CELL PENETRATING PEPTIDES CHILDREN'S RESEARCH INSTITUTE 111 MICHIGAN AVENUE NW STE 5400 WASHINGTON DC 20010 521654453 115(1) 140846 0 FT2022-003: PEAK ALPHA FREQUENCY AS AN EEG BIOMARKER FOR ANGELMAN SYNDROME BROWN UNIVERSITY CONTROLLERS OFFICE - BOX J PROVIDENCE RI 02912 050258809 115(1) 150000 0 FT2022-005: DEVELOPMENT OF BDNF POTENTIATING THERAPEUTICS FOR MOTOR AND COGNITIVE DYSFUNCTION IN AS BROWN UNIVERSITY CONTROLLERS OFFICE - BOX J PROVIDENCE RI 02912 050258809 115(1) 50500 0 PD2023-001: POSTDOCTORAL FELLOWSHIP PROGRAM BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 115(1) 470957 0 FT2022-006: ABOM - NATURAL HISTORY STUDY REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS 1 SHIELDS AVENUE DAVIS CA 95616 946036494 115(1) 274044 0 FT2022-007: GASTROINTESTINAL BIOMARKERS IN PRECLINICAL MODELS OF ANGELMAN SYNDROME RUSH UNIVERSITY MEDICAL CENTER 1653 W CONGRESS PKWY CHICAGO IL 60612 362174823 115(1) 320500 0 RUSH COE THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO 1855 FOLSOM STREET STE 425 SAN FRANCISCO CA 94143 946036493 115(1) 210711 0 FT2023-002: DEVELOPING A CRISPRA THERAPY FOR THE CLASSI/II DELETION GENOTYPE OF ANGELMAN SYNDROME 10 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 X 0 0 0 0 0 0 0 0 0 ALLYSON BERENT CHIEF SCIENCE OFFICER 0 509945 0 0 0 0 0 0 0 0 0 509945 0 0 RYAN K FISCHER CHIEF OPERATING OFICER 254930 0 31200 0 0 0 0 0 0 0 286130 0 0 0 ALANA NEWHOUSE PRESIDENT/CEO 245000 0 0 0 0 0 0 0 0 0 245000 0 0 0 KENA PEARSON CHIEF FINANCIAL OFFICER 211068 0 21500 0 0 0 0 0 0 0 232568 0 0 0 MICHELE GOLOMBUSKI CHIEF DEVELOPMENT OFFICER 190693 0 19375 0 0 0 0 0 0 0 210068 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. FORM 990, PART VI, SECTION A, LINE 4 THE ORGANIZATION AMENDED THEIR BY-LAWS ON SEPTEMBER 2, 2024. 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. TRANSFORMATX BIOTHERAPEUTICS LLC 57 SHADE STREET LEXINGTON MA 02421 263160079 MEDICAL RESEARCH DE FAST RELATED -474715 2604001 0 1 0.92630 MAVRIX BIO LLC 35 VILLAGE RD STE 100 MIDDLETON MA 01949 332209130 MEDICAL RESEARCH DE FAST RELATED -127596 1131583 0 1 0.90000 AS2 BIO INC 35 VILLAGE ROAD SUITE 100 MIDDLETON MA 01949 MANAGEMENT COMPANY DE FAST C -34027 708945 0.62000 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 AS2 BIO M 1679065 BOOK MAVRIX BIO LLC B 2000000 BOOK AS2 BIO B 386761 BOOK TRANSFORMATX BIOTHERAPEUTICS LLC B 947303 BOOK