2015-09-03T15:48:33-05:00 2014-12-31 264298079 EFP ROTENBERG LLP 280 KENNETH DRIVE ROCHESTER NY 14623 990 2014-01-01 455557987 HUNTINGTON STUDY GROUP LTD HUNT 5853193591 919 WINTON ROAD SOUTH SUITE 212 ROCHESTER NY 14618 SHARI KINEL EXECUTIVE DIRECTOR 5853193591 2015-08-19 1 JENNIFER ARBORE P00893012 5854278900 2015-08-19 2014 2016-04-25 22:37:26Z X SHARI KINEL 919 WINTON ROAD SOUTH SUITE 212 ROCHESTER NY 14618 6987372 0 X WWW.HUNTINGTON-STUDY-GROUP.ORG X 2012 NY SEE SCHEDULE O FOR ORGANIZATIONS MISSION AND MOST SIGNIFICANT ACTIVITIES.THE ORGANIZATION AIMS TO ADVANCE KNOWLEDGE ABOUT THE CAUSE(S), DISEASE PROGRESSION AND TREATMENT OF HUNTINGTON DISEASE AND RELATED DISORDERS. 4 3 6 48 0 0 135492 119095 3580397 6852443 0 0 19381 15834 3735270 6987372 0 0 0 0 205800 430752 0 0 0 2535680 6060766 2741480 6491518 993790 495854 1388134 2418412 411332 945756 976802 1472656 X THE HUNTINGTON STUDY GROUP (HSG) IS DEDICATED TO THE MISSION: TO SEEK TREATMENTS THAT MAKE A DIFFERENCE TO THOSE AFFECTED BY HUNTINGTON DISEASE. DESCRIPTION CONTINUED ON SCHEDULE O.SPECIFICALLY, THE HSG FOCUSES ON THE CONCEPTION, CONDUCT, ANALYSES, SCIENTIFIC REPORTING, AND COMMUNICATION OF CLINICAL RESEARCH, INCLUDING TREATMENT AND OBSERVATIONAL TRIALS, AIMED AT RELIEVING THE BURDENS AND SLOWING THE PROGRESSION OF HD. THE HSG 1) IDENTIFIES AND PRIORITIZES INITIATIVES THAT CAN HAVE AN IMPACT ON PATIENT CARE; 2) ADVANCES KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; AND 3) COLLABORATES WITH GOVERNMENT, FOUNDATIONS, INDUSTRY, AND THE HD COMMUNITY TO EFFECTIVELY PLAN, EXECUTE AND DISSEMINATE RESEARCH AND NEW KNOWLEDGE RELATED TO HD. 0 0 5949922 6852443 THE HSG IS A NETWORK OF CLINICIANS, RESEARCH INVESTIGATORS, SCIENTISTS AND HUNTINGTON DISEASE (HD) EXPERTS, LARGELY FROM ACADEMIC/RESEARCH INSTITUTIONS WORLDWIDE WORKING TOGETHER WITH A VARIETY OF SPONSORS (GOVERNMENT, INDUSTRY, FOUNDATION) TO DEVELOP TREATMENTS THAT MAKE A DIFFERENCE FOR HD PATIENTS AND FAMILIES. WE PARTNER WITH HD CARE AND ADVOCACY GROUPS IN ORDER TO FULFILL OUR MISSION MOST EFFECTIVELY.DESCRIPTION CONTINUED ON SCHEDULE O.THE HSG HAS CARRIED OUT COOPERATIVE THERAPEUTIC RESEARCH SINCE 1993, BEGINNING WITH THE DEVELOPMENT OF THE UNIFIED HUNTINGTON'S DISEASE RATING SCALE (UHDRS) AND LONGITUDINAL DATABASE. THE HSG, THROUGH A CLINICAL TRIAL, BROUGHT THE FIRST AND TO DATE ONLY FDA-APPROVED HD TREATMENT (TETRABENAZINE) TO MARKET. WE CONTINUE TO SERVE OUR CONSTITUENTS THROUGH CLINICAL RESEARCH STUDIES. THE HSG HAS PARTNERED WITH PHARMACEUTICAL COMPANIES, PRIVATE FOUNDATIONS, THE NATIONAL INSTITUTES OF HEALTH (NIH), AND THE FDA ORPHAN DRUG PRODUCTS DIVISIONS IN DEVELOPING AND CONDUCTING TRIALS AND OBSERVATIONAL STUDIES.THE HSG IS COMMITTED TO 1) ADVANCE KNOWLEDGE ABOUT THE CAUSE, DISEASE PROGRESSION AND TREATMENT OF HD AND RELATED DISORDERS; 2) DEVELOPMENT, ACCESS TO, AND MAINTENANCE OF STUDY DATABASES; 3) FULL DISCLOSURE OF RESEARCH RESULTS IN SCIENTIFIC JOURNALS AFTER INDEPENDENT EXPERT REVIEW; 4) PROTECTION AGAINST CONFLICT OF INTEREST; 5) UNIFORM CONTRACTING AND SUB-CONTRACTING ACROSS ALL RESEARCH SITES; AND 6) DEMOCRATIC GOVERNANCE OF ITS ORGANIZATIONS AND ACTIVITIES. 5949922 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 24 0 1 6 1 0 0 0 0 0 0 0 0 0 0 0 X 4 3 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 NY X THE ORGANIZATION 5852448804 919 WINTON ROAD SOUTH SUITE 212 ROCHESTER NY 14618 RAY DORSEY MD PRESIDENT 5.00 X X 0 0 10000 BLAIR LEAVITT MD VICE PRESIDENT 5.00 X X 0 0 10000 JULIE STOUT TREASURER 5.00 X X 0 0 5000 SHARI KINEL JD EXECUTIVE DIRECTOR/SECRETA 40.00 X X 122888 0 16371 MAG SABA MAY - NOVEMBER DIRECTOR OF FINANCE 40.00 X 25130 0 2685 WILLIAM LAMPETER JANUARY - APRIL DIRECTOR OF FINANCE 40.00 X 39701 0 1974 187719 0 46030 1 0 0 0 UNIVERSITY OF ROCHESTER 265 CRITTENDEN BLVD ROCHESTER NY 14642 2017178 BMC ONE BOSTON MEDICAL CENTER PL BOSTON MA 02118 162220 UNIVERSITY OF ALABAMA AT BIRMINGHAM 1720 7TH AVE S SPARKS CENTER 350E BIRMINGHAM AL 35233 137781 BAYLOR COLL OF MED PARKINSONS 6550 FANNIN ST SUITE 1801 HOUSTON TX 77030 120845 VANDERBILT UNIVERSITY BOX 891236 1501 NORTH PLANO RD SUIT RICHARDSON TX 75081 108042 5 119095 119095 PROGRAM SERVICE REVENU 541700 6277819 6277819 ANNUAL MEETING REVENUE 541700 440659 440659 LICENSE FEES 541700 133965 133965 6852443 OTHER 541700 15834 15834 15834 6987372 6868277 0 0 192074 192074 179458 179458 10128 10128 23021 23021 26071 26071 3398 3398 12454 12454 14494 14494 29886 19434 10452 7955 7955 16953 16953 16160 16160 342550 340489 2061 77225 76957 268 2964 2964 8507 8507 SITE EXPENSES 2429211 2429211 CLINICAL TRIAL COORDINA 2311454 2311454 PRINCIPAL INVESTIGATORS 289109 289109 BIOSTATS 236357 236357 262089 246911 15178 6491518 5949922 541596 0 1026937 1917072 354584 476144 12942 17193 4939 6613 12254 1388134 2418412 340249 922508 71083 23248 411332 945756 X 976802 1472656 976802 1472656 1388134 2418412 495854 0 X 0 1 X 1 0 X 3410 135492 119095 257997 3580397 6872077 10452474 3410 3715889 6991172 10710471 0 0 0 10710471 19381 15834 35215 3410 3735270 7007006 10745686 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 17193 4939 12254 12254 X 6987372 0 6987372 0 6987372 6491518 0 6491518 0 6491518 PART X, LINE 2: THE ORGANIZATION IS A NOT-FOR-PROFIT ENTITY AND IS EXEMPT FROM INCOME TAXES AS AN ORGANIZATION QUALIFIED UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. IN ACCORDANCE WITH ASC 740-10-50, THE ORGANIZATION RECOGNIZES TAX BENEFITS FROM UNCERTAIN TAX POSITIONS ONLY IF IT IS MORE LIKELY THAN NOT THAT THE TAX POSITION WILL BE SUSTAINED ON EXAMINATION BY THE TAXING AUTHORITIES. MANAGEMENT BELIEVES THAT THE ORGANIZATION IS CURRENTLY OPERATING IN COMPLIANCE WITH THE APPLICABLE REQUIREMENTS OF THE INTERNAL REVENUE CODE. THEREFORE, NO LIABILITY FOR UNRECOGNIZED TAX BENEFITS HAS BEEN INCLUDED ON THE ORGANIZATION'S FINANCIAL STATEMENTS. THE EXEMPT ORGANIZATION'S INFORMATIONAL RETURNS ARE SUBJECT TO AUDIT BY VARIOUS TAXING AUTHORITIES AND ITS OPEN AUDIT PERIODS ARE 2012 THROUGH 2014. FORM 990, PART VI, SECTION B, LINE 11 THE FORM 990 IS REVIEWED INTERNALLY BY THE EXECUTIVE DIRECTOR AND DIRECTOR OF FINANCE AND THEN SHARED WITH THE BOARD BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C EACH DIRECTOR, OFFICER, COMMITTEE MEMBER OR EMPLOYEE SHALL SIGN ANNUALLY A STATEMENT THAT CONFIRMS THAT THEY HAVE RECEIVED THE CONFLICT OF INTERES POLICY, UNDERSTANDS THE POLICY, HAS AGREED TO COMPLY WITH THE POLICY AND UNDERSTANDS THAT THE ORGANIZATION IS A TAX EXEMPT ENTITY AND THAT IN ORDER TO MAINTAIN ITS EXEMPTION IT MUST ENGAGE PRIMARILY IN ACTIVITIES THAT ACCOMPLISH ONE OR MORE OF ITS TAX EXEMPT PURPOSES. PERIODIC REVIEWS ARE CONDUCTED TO ENSURE COMPLIANCE WITH THIS POLICY. FORM 990, PART VI, SECTION B, LINE 15 THE AMOUNT OF COMPENSATION WAS BASED ON A DECISION TO OFFER A STIPEND TO BOARD MEMBERS FOR THE SIGNIFICANT AMOUNT OF TIME AND COMMITMENT SPENT BY THE BOARD MEMBERS ON AN ANNUAL BASIS. THE EXECUTIVE DIRECTOR HAS DETERMINED THAT THE STIPENDS ARE DEEMED TO BE REASONABLE IN RELATION TO THE AMOUNT OF TIME SPENT BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION C, LINE 19 ALL DOCUMENTS ARE AVAILABLE UPON REQUEST