2019-08-08T11:06:28-05:00 2019-02-28 113518842 MARKS PANETH LLP 685 THIRD AVENUE NEW YORK NY 10017 990 2018-03-01 237191992 TOURETTE ASSOCIATION OF AMERICA INC TOUR 7182242999 42-40 BELL BOULEVARD BAYSIDE NY 11361 SONJA MASON-VIDAL VICE PRESIDENT, FINANCE 7182242999 2019-08-07 1 ROBERT R LYONS CPA P00227472 2125038800 69.74.165.34 2019-08-07 11:26:38 ED P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 E99CEA45C307B5E011B655275064C3D25F8033D4 2018 2019-02-21 02:37:17Z SONJA MASON-VIDAL 42-40 BELL BOULEVARD BAYSIDE NY 11361 6027411 0 X TOURETTE.ORG X 1972 NY TO IDENTIFY THE CAUSE OF, FIND THE CURE FOR AND CONTROL THE EFFECTS OF TOURETTE SYNDROME. 21 21 27 52 0 7680 6229710 4228564 53100 174766 338811 177443 27754 -17748 6649375 4563025 948916 672015 0 0 2119740 2042624 0 0 556432 1981448 2378989 5050104 5093628 1599271 -530603 12534962 11792422 1032081 782801 11502881 11009621 X TO IDENTIFY THE CAUSE OF, FIND THE CURE FOR, AND CONTROL THE EFFECTS OF TOURETTE SYNDROME. THE TOURETTE ASSOCIATION IS DEDICATED TO MAKING LIFE BETTER FOR ALL PEOPLE AFFECTED BY TOURETTE AND TIC DISORDERS. 0 0 1167013 672015 RESEARCH & MEDICAL PROGRAMS - WORKING TO ADVANCE SCIENTIFIC UNDERSTANDING, TREATMENT OPTIONS AND CARE OPTIONS FOR THE DISORDER BY PROVIDING FUNDING FOR RESEARCH INVESTIGATIONS IN THE AREAS OF NEUROSCIENCES, GENETICS, BEHAVIORAL THERAPY, CLINICAL TRIALS 1649917 174766 PUBLIC EDUCATION - PROVIDE EDUCATION AND AWARENESS BY RAISING PUBLIC AWARENESS AND FOSTERING SOCIAL ACCEPTANCE. EDUCATING PROFESSIONALS TO BETTER SERVE THE NEEDS OF CHILDREN, ADULTS AND FAMILIES CHALLENGED BY TOURETTE AND TIC DISORDERS. ADVOCATING FOR PUBLIC POLICIES AND SERVICES THAT PROMOTE POSITIVE SCHOOL, WORK AND SOCIAL ENVIRONMENTS. PROVIDING HELP, HOPE AND A SUPPORTIVE COMMUNITY ACROSS THE NATION. EMPOWERING OUR COMMUNITY TO DEAL WITH THE COMPLEXITIES OF THIS SPECTRUM OF DISORDERS. 1081176 CENTERS FOR DISEASE CONTROL (CDC) PARTNERSHIP - THE ASSOCIATION AND CDC WORK TOGETHER TO PROVIDE EXPERT EDUCATION ABOUT TOURETTE SYNDROME TO PHYSICIANS AND ALLIED PROFESSIONALS AND TO ENCOURAGE PHYSICIANS TO APPLY TO THE ASSOCIATIONS' REFERRAL LISTS. INCLUDES PROGRAMS TO EDUCATE SCHOOLS AND COMMUNITIES ABOUT TOURETTE SYNDROME. 40921 THE TOURETTE SYNDROME BEHAVIOR TRAINING INSTITUTE ( "TS- BTI") WAS CREATED TO EXPAND THE NUMBER OF HEALTHCARE PROFESSIONALS COMPETENTLY TRAINED IN BEHAVIOR THERAPY FOR TOURETTE SYNDROME AND OTHER TIC DISORDERS. PROFESSIONAL EDUCATION - PROVIDES FOR THE EDUCATION AND AWARENESS OF TOURETTE SYNDROME TO MEDICAL PROFESSIONALS, THROUGH AMONG OTHER THINGS, SEMINARS AND DISTRIBUTION OF RESEARCH UPDATES. 40921 3939027 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 50 0 1 27 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 21 21 0 0 0 0 1 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CT FL IL LA ME MD MI MA MN MS NH NJ NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X SONJA MASON-VIDAL 7182242999 42-40 BELL BOULEVARD BAYSIDE NY 113612820 ALICE KANE DIRECTOR 2.00 X 0 0 0 AZAD ANAND MD DIRECTOR 2.00 X 0 0 0 BRUCE D OCHSMAN DIRECTOR 2.00 X 0 0 0 CHERI G DAVID CPA CVA DIRECTOR 2.00 X 0 0 0 CHRIS OVITZ DIRECTOR (OUTGOING) 2.00 X 0 0 0 CINDY KURTZ SECOND VICE CHAIR 2.00 X X 0 0 0 DAVID KOCH DIRECTOR 2.00 X 0 0 0 DAVID SCHOENHAAR DIRECTOR 2.00 X 0 0 0 FRED COOK DIRECTOR 2.00 X 0 0 0 JASMINE TARKOFF DIRECTOR 2.00 X 0 0 0 JEFFREY KRAMER DIRECTOR 2.00 X 0 0 0 JOHN WALKUP MD DIRECTOR 2.00 X 0 0 0 JULIE HADDON DIRECTOR (OUTGOING) 2.00 X 0 0 0 JULIE MOELIS DIRECTOR 2.00 X 0 0 0 MARCIE KIRPATRICK DIRECTOR (OUTGOING) 2.00 X 0 0 0 MONTE REDMAN DIRECTOR 2.00 X 0 0 0 NANCY KRAMER DIRECTOR (OUTGOING) 2.00 X 0 0 0 PAUL S DEVORE THIRD VICE CHAIR 2.00 X X 0 0 0 PETER HOLLENBECK PHD FOURTH VICE CHAIR 2.00 X X 0 0 0 RANDI ZEMSKY CHAIR 3.00 X X 0 0 0 REID ASHINOFF DIRECTOR 2.00 X 0 0 0 ROBIN SMALL DIRECTOR (OUTGOING) 2.00 X 0 0 0 ROVENA SCHIRLING DIRECTOR 2.00 X 0 0 0 STEPHEN MCCALL M ED DIRECTOR 2.00 X 0 0 0 STEPHEN BARRON FIRST VICE CHAIR 2.00 X X 0 0 0 SUSAN COUREY PHD DIRECTOR 2.00 X 0 0 0 AMANDA TALTY PRESIDENT & CEO 40.00 X 194451 0 13474 DIANA FELNER VICE PRES., PUBLIC POLICY 40.00 X 100729 0 42389 DIANA SHINEMAN VICE PRES., RESEARCH & MEDICAL 40.00 X 98184 0 40732 JOHN MILLER PRESIDENT & CEO (OUTGOING) 40.00 X 75894 0 11619 SONJA MASON-VIDAL VICE PRES., SEC. & TREAS. 40.00 X 108489 0 16899 TRACEY ALEXANDER VICE PRES., FIN. & ADM. 40.00 X 112069 0 13574 689816 0 138687 4 0 1 0 PANOS GRAPHIC SERVICES 4 ANDERSON COURT WESTBURY SHORE NY 11706 GRAPHIC DESIGN SERVICES 266768 1 41990 1072487 1082899 2031188 39780 4228564 CONFERENCE INCOME 900099 174766 174766 174766 178745 178745 1321966 1323268 -1302 -1302 -1302 123370 1072487 141118 -17748 -17748 4563025 174766 0 159695 261666 261666 165410 165410 244939 244939 834610 611085 125170 98355 969479 700023 149559 119897 19907 15900 1807 2200 86898 61339 13291 12268 131730 99448 17492 14790 26763 16116 9994 653 179116 138438 25330 15348 17071 17071 89037 64038 15829 9170 593147 414768 22738 155641 203886 164156 24603 15127 212007 133700 44035 34272 206937 151249 29917 25771 15196 9353 3191 2652 47210 27238 17846 2126 NATIONAL CONFERENCE 184940 184940 OTHER CONF. & MEETINGS 176661 176550 0 111 PROMOTIONAL EXPENSES 113027 104464 0 8563 RECRUITMENT & TRAINING 91377 63133 21778 6466 222614 131074 58518 33022 5093628 3939027 598169 556432 1495482 181841 2198881 7193131 80693 1530141 1647188 27585 249219 197138 286194 243930 23336 42264 6840163 2608807 0 11515 12534962 11792422 286819 268991 601214 497398 144048 16412 1032081 782801 X 9424547 9339693 1752334 1335928 326000 334000 11502881 11009621 12534962 11792422 X -530603 46023 -8680 X X 0 1 X 1 1 1 X 3219382 2929098 3105580 6229710 4228564 19712334 3219382 2929098 3105580 6229710 4228564 19712334 1263383 18448951 469369 244479 189751 144102 178745 1226446 624868 626480 714182 284562 123370 2373462 23312242 704956 0.79140 0.75780 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: FUNDRAISING INCOME - 2014 AMOUNT: $ 592,747. 2015 AMOUNT: $ 626,480. 2016 AMOUNT: $ 714,182. 2017 AMOUNT: $ 284,562. 2018 AMOUNT: $ 123,370. MISC INCOME - 2014 AMOUNT: $ 32,121. 1 1 0 1 150987 0 0 1 28129 0 0 179116 0 PART I-A, LINE 1: TAA ADVOCATES TO ENSURE GOVERNMENT OFFICIALS UNDERSTAND TOURETTE SYNDROME (TS) AND TIC DISORDERS (TD) AND TO ENSURE POLICIES AND REGULATIONS BEING DRAFTED, RELEASED AND FINALIZED OR SIGNED INTO LAW ARE IN THE BEST INTERESTS OF THOSE WITH TS OR TD. WE ALSO ADVOCATE TO ENSURE ADEQUATE GOVERNMENT FUNDING IS PROVIDED FOR THE CDC TOURETTE SYNDROME PUBLIC HEALTH EDUCATION AND RESEARCH PROGRAM AND AT THE NATIONAL INSTITUTES OF HEALTH'S NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE AND THE NATIONAL INSTITUTE OF MENTAL HEALTH. 326000 8000 6701 6701 334000 326000 6521 6521 326000 326000 5989 5989 326000 326000 4604 4604 326000 326000 1560 1560 326000 1.00000 0 0 286194 243930 42264 42264 X 4715397 46023 153657 199680 4515717 17071 30237 47308 4563025 5208657 153657 8680 162337 5046320 17071 30237 47308 5093628 PART V, LINE 4: THE INTENDED USE OF THE ORGANIZATION'S ENDOWMENT FUNDS IS TO SUPPORT THE WORK OF THE PUBLIC EDUCATION (INFORMATION & REFERRAL SERVICE) PROGRAM. PART X, LINE 2: THE ASSOCIATION BELIEVES IT HAS NO UNCERTAIN TAX POSITIONS AS OF FEBRUARY 28, 2019 AND FEBRUARY 28, 2018 IN ACCORDANCE WITH ACCOUNTING STANDARDS CODIFICATION ("ASC") TOPIC 740, WHICH PROVIDES STANDARDS FOR ESTABLISHING AND CLASSIFYING ANY TAX PROVISIONS FOR UNCERTAIN TAX POSITIONS. PART XI, LINE 4B - OTHER ADJUSTMENTS: INDIRECT FUNDRAISING EXPENSES 30,237. PART XII, LINE 2D - OTHER ADJUSTMENTS: TRANSPORTATION BENEFITS 8,680. PART XII, LINE 4B - OTHER ADJUSTMENTS: INDIRECT FUNDRAISING EXPENSES 30,237. 1 EUROPE 0 0 RESEARCH GRANT TO FURTHER TOURETTE'S MISSION RESEARCH GRANT 244939 0 0 0 0 0 0 244939 0 244939 EUROPE RESEARCH 149992 EUROPE RESEARCH 94947 2 0 0 0 0 0 0 PART I, LINE 2: GRANTEES ARE REQUIRED TO SUBMIT ANNUAL PROGRESS REPORTS. GALA 1039961 961911 78050 83395 GOLF TOURNAMENTS 155896 110576 45320 6338 48200 3185 1195857 1072487 123370 6338 131595 3185 141118 -17748 1 AMERICAN ACADEMY OF NEUROLOGY INSTITUTE 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 410726167 501(C)(3) 86666 RESEARCH CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 75000 RESEARCH MASSACHUSSETS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 042697933 501(C)(3) 50000 RESEARCH YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 50000 RESEARCH RESEARCH RESEARCH RESEARCH RESEARCHRESEARCH RESEARCH 4 DEEP BRAIN STIMULATION RESEARCHERS 1 132065 CLINICIANS PROVIDING CARE TO PATIENTS WITH TOURETTES(CENTERS OF EXCELLENCE PROGRAM) 5 31840 CLINICIANS MAINTAINING BRAIN BANK COLLECTION 1 1505 PART I, LINE 2: THE ASSOCIATION MUST RECEIVE A FINAL PROGRESS REPORT DESCRIBING RESEARCH AND OUTCOMES AS WELL AS HOW FUNDS HAVE BEEN USED. ADVISORY BOARDS REVIEW AND APPROVE BEFORE FINAL PAYMENT IS MADE. X X X X 0 0 0 0 0 0 0 0 0 AMANDA TALTY PRESIDENT & CEO 194261 0 0 0 190 0 4806 0 8668 0 207925 0 0 0 X 5 39780 FAIR MARKET VALUE 0 1 0 PART I, LINE 30B: THE NUMBER IN COLUMN (B) REPRESENTS THE NUMBER OF ITEMS CONTRIBUTED. FORM 990, PART VI, SECTION A, LINE 6 TOURETTE ASSOCIATION OF AMERICA INC. IS A MEMBERSHIP ORGANIZATION. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS PREPARED BY AN INDEPENDENT ACCOUNTING FIRM. THE FORM 990 IS PROVIDED TO EACH BOARD MEMBER FOR THEIR REVIEW. THE FORM 990 IS ONLY FILED AFTER EACH BOARD MEMBER FORMALLY APPROVES THE 990. FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY IS SIGNED ANNUALLY BY BOARD MEMBERS. FORM 990, PART VI, SECTION B, LINE 15 THERE IS A PERSONNEL/COMPENSATION COMMITTEE. THE CHAIR ASSIGNS THE MEMBERS TO DO RESEARCH AND COME UP WITH RECOMMENDATIONS TO THE COMMITTEE. THE CHAIRMAN TAKES THE AMOUNTS TO THE FULL BOARD FOR APPROVAL. FORM 990, PART VI, SECTION C, LINE 19 FINANCIAL STATEMENTS, FORM 990 AND ANNUAL REPORT ARE ON THE WEB. ALL OTHER POLICIES ARE AVAILABLE UPON REQUEST. FORM 990, PART XI, LINE 9: NON-DEDUCTIBLE TRANSPORTATION BENEFITS -8,680. FORM 990, PART XII, LINE 2C: THE PROCESS OF OVERSEEING THE AUDIT AND SELECTION OF INDEPENDENT ACCOUNTANT HAS NOT CHANGED FROM PRIOR YEAR.