2016-11-08T12:51:41-06:00 2015-12-31 453950334 HEGRE MCMAHON & SCHIMMEL LLC 600 ENTERPRISE DRIVE STE 109 OAK BROOK IL 60523 990 2015-01-01 263160079 FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS FOUN 8667830078 PO BOX 608 DOWNERS GROVE IL 60515 PAULA EVANS CHAIRPERSON 8667830078 2016-10-28 1 SEAN MCMAHON P00350296 3123456200 2016-10-28 2015 2017-02-10 21:41:12Z PAULA EVANS PO BOX 608 DOWNERS GROVE IL 60515 2071168 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. 13 13 0 190 0 0 1558523 1103236 0 0 3473 -740 -33216 -24023 1528780 1078473 1042667 1116067 0 0 0 0 0 0 39793 165673 189320 1208340 1305387 320440 -226914 1571929 1194959 150000 0 1421929 1194959 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 1114668 1114668 FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS. 125910 AS 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 2015, FAST BROUGHT TOGETHER 740 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 THE HEAD OF FAST'S SCIENTIFIC ADVISORY BOARD AND FIRE TEAM, DR. EDWIN WEEBER, AND THE OTHER FIRE TEAM MEMBERS DR. SCOTT DINDOT, DR. DAVID SEGAL AND DR. ANNE ANDERSON, AS WELL AS DR. REBECCA BURDINE, FAST'S CHIEF SCIENCE OFFICER. NON-SCIENTIFIC GUEST SPEAKERS INCLUDED JAI COURTNEY, RETTA SIRLEAF, ZACHARY LEVI, WILMERE VALDERRAMA, JESSE LEE SOFFER, AND PAULA EVANS. IN ADDITION, AN EDUCATIONAL SUMMIT WAS HELD WITH GUEST EDUCATIONAL EXPERTS, LINDA BURKHART AND GAYLE PORTER. 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. 1399 1399 LITERACY AND ADVANCING ADVENTURES IN COMMUNICATING CAMP FOR INDIVIDUALS WITH ANGELMAN SYNDROME AND THEIR FAMILIES. 1241977 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 0 0 0 0 0 0 1 1 0 0 X 13 13 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 0 0 0 0 CA IL NJ FL MA X PAULA EVANS 8667830078 1918 SWEETBRIAR LANE DARIEN IL 60561 X PAULA EVANS CHAIPERSON 40.00 X X 0 0 0 MAIDDY DUNIGAN CO VICE CHAIRPERSON 30.00 X X 0 0 0 SHARON CLARIDGE SECRETARY 5.00 X X 0 0 0 KENA RICHERT TREASURER 10.00 X X 0 0 0 REBECCA BURDINE CHIEF SCIENCE OFFICER 3.00 X 0 0 0 KRISTY DIXON DIRECTOR 5.00 X 0 0 0 MEAGAN CROSS COMMUNICATIONS OFFICER 15.00 X 0 0 0 TERENCE SULLIVAN FINANCIAL OFFICER 3.00 X 0 0 0 SHARON WEIL-CHALKER SCIENCE OFFICER 5.00 X 0 0 0 BRYAN THOMPSON DIRECTOR 5.00 X 0 0 0 DANIELLE PINDERS EVENTS COORDINATOR 20.00 X 0 0 0 SAM MAYDEW DIRECTOR 10.00 X 0 0 0 ALLYSON BERENT SCIENCE OFFICER 10.00 X 0 0 0 0 0 0 0 0 0 0 0 344778 758458 6736 1103236 421 421 948778 949939 -1161 -1161 -1161 18733 344778 42756 -24023 -24023 1078473 0 0 -24763 1114668 1114668 1399 1399 8000 8000 38512 2552 35960 2953 2953 8847 5014 3833 125910 125910 TELEPHONE AND TELECOMMU 3437 3437 FILING FEES AND REGISTR 885 885 POSTAGE AND DELIVERY 702 702 BANK AND MERCHANT ACCOU 74 74 1305387 1241977 23617 39793 196827 155192 1375102 1033028 6739 1571929 1194959 150000 0 150000 0 X 1406068 1179369 15861 15590 1421929 1194959 1571929 1194959 -226914 -56 0 X 0 1 X 0 0 X 638779 956923 913798 1573348 1121969 5204817 638779 956923 913798 1573348 1121969 5204817 1392449 3812368 746 279 3478 -740 3763 5208580 0.73190 0.67080 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1121173 -56 42756 42700 1078473 0 1078473 1348143 42756 42756 1305387 0 1305387 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 NORTH AMERICA 0 0 PROGRAM SERVICES AND GRANTS TO FOREIGN ORGANIZATIONS LITERACY AND ADVANCING ADVENTURES IN COMMUNICATING CAMP FOR INDIVIDUALS WITH ANGELMAN SYNDROME AND THEIR FAMILIES. 1399 0 0 0 0 0 0 1399 0 1399 NORTH AMERICA LITERACY AND ADVANCING ADVENTURES IN COMMUNICATING CAMP FOR INDIVIDUALS WITH ANGELMAN SYNDROME AND THEIR FAMILIES. 1399 CHECK 1 0 0 0 0 0 0 PART I, LINE 2: EACH DISBURSEMENT OF ANY FUNDING AWARDED IS CONTINGENT UPON RECIPIENT'S DEMONSTRATION OF PROGRESS THAT IS SATISFACTORY TO THE FOUNDATION, IN ITS SOLE DISCRETION. RECIPIENTS WILL BE REQUIRED TO SUMBIT WRITTEN REPORTS TO THE FOUNDATION FROM TIME TO TIME AS FOLLOWS DESCRIBING PROGRESS MADE. RECIPIENT WILL SUBMIT A PROGRESS REPORT DUE 11 MONTHS AFTER RECEIPT OF THE FIRST DISBURSEMENT. THE INITIAL PROGRESS REPORT SHOULD FOCUS ON PROGRESS MADE TOWARD MEETING THE MILESTONES OUTLINED IN THE PROJECT. A FINAL PROGRESS REPORT MUST BE SUBMITTED WITHIN 60 DAYS AFTER PROJECT TERMINATION AND SHOULD INCLUDE A DETAILED ACCOUNTING OF THE FUNDS AWARDED. AT THE FOUNDATION'S REQUEST, THE RECIPIENT WILL ALSO MAKE A PRESENTATION ABOUT THE SIGNIFICANCE AND PROGRESS OF THEIR WORK TO A MEETING OF THE FOUNDATION'S BOARD AND ANY OTHER PARTICIPANTS CHOSEN BY THE FOUNDATION. UPON REASONABLE NOTICE, THE RECIPIENT AGREES TO ALLOW THE FOUNDATION'S REPRESENTATIVES TO VISIT THE LOCATION(S) WHERE THE ACTIVITY AND/OR RESEARCH IS BEING CONDUCTED IN ORDER TO GAIN FURTHER KNOWLEDGE TO EVALUATE PROGRESS WITH RESPECT TO THE PROJECT. ANNUAL GALA 363511 344778 18733 38403 3036 1317 363511 344778 18733 38403 3036 1317 42756 -24023 1 UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 971284 IDENTIFICATION AND CHARACTERIZATION OF NOVEL THERAPEUTICS FOR ANGELMAN SYNDROME UNIVERSITY OF SOUTH FLORIDA SPONSORED RESEARCH 3650 SPECTRUM BLVD SUITE 160 TAMPA FL 33612 593102112 115(1) 157487 GENE THERAPY APPROACH TO THE THERAPEUTIC TREATMENT OF ANGELMAN SYNDROME. 2 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. 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 11 THE BOOKS AND RECORDS ARE MAINTAINED BY FAST'S TREASURER AND REVIEWED BY THE CFO AND THE CO-VICE CHAIRPERSONS. 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 CO-VICE CHAIRPERSONS FOR REVIEW. THE TREASURER, CFO AND CO-VICE CHAIRPERSONS 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.