2018-11-14T08:48:08-06:00 2017-12-31 474526160 EFPR GROUP CPAS PLLC 280 KENNETH DRIVE ROCHESTER NY 14623 990 2017-01-01 455557987 HUNTINGTON STUDY GROUP LTD HUNT 5852420276 919 WINTON ROAD SOUTH SUITE 212 ROCHESTER NY 14618 SHARI KINEL EXECUTIVE DIRECTOR 5852420276 2018-10-16 1 CHRISTOPHER JOHNSTON P00896198 5854278900 2018-10-16 64.88.174.3 2018-10-16 11:34:12 ED P 408D6A240A793A7E1324CCAF5446230301B0D274 5C15A7B027B09C35D419CA4E5BE22CA154F055B7 2017 2019-02-21 02:37:17Z SHARI KINEL 919 WINTON ROAD SOUTH SUITE 212 ROCHESTER NY 14618 8183725 0 X WWW.HUNTINGTONSTUDYGROUP.ORG X 2012 NY SEE SCHEDULE O FOR ORGANIZATION'S 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. 5 4 5 0 0 0 432500 678753 8950684 7401010 52780 63761 25786 40201 9461750 8183725 5000 25000 0 0 573445 580879 0 0 0 8509356 7570504 9087801 8176383 373949 7342 5486806 5438462 2416198 2210913 3070608 3227549 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 7414976 25000 7500494 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. 7414976 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 22 0 1 5 1 0 0 0 0 0 0 0 0 0 0 X 5 4 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 CHAIR 5.00 X X 20000 0 0 BLAIR LEAVITT MD CHAIR 5.00 X X 20000 0 0 JULIE STOUT TREASURER 5.00 X X 10000 0 0 SHARI KINEL JD EXEC. DIRECTOR/SECRETARY 40.00 X X 120481 0 21000 JONI STEINMAN MEMBER-AT-LARGE 5.00 X 5000 0 0 STEVAN RAMIREZ DIRECTOR OF FINANCE 40.00 X 103472 0 10130 278953 0 31130 2 0 0 0 UNIVERSITY OF ROCHESTER CHET 265 CRITTENDEN BLVD ROCHESTER NY 14642 TRIAL MANAGEMENT 2937083 VANDERBILT UNIVERSITY 1501 NORTH PLANO RD SUITE 100 RICHARDSON TX 75081 PATIENT FEES 413468 COLUMBIA UNIVERSITY PO BOX 26453 NEW YORK NY 10087 PATIENT FEES 312434 MASSACHUSETTS GENERAL HOSPITAL PO BOX 414876 BOSTON MA 02241 PATIENT FEES 230120 LONG ISLAND JEWISH 350 COMMUNITY DRIVE MANHASSET NY 11030 INVESTIGATOR FEES 177514 17 678753 678753 PROGRAM SERVICE REVENU 541700 7260059 7260059 ANNUAL MEETING REVENUE 541700 129429 129429 LICENSE FEES 541700 11522 11522 7401010 59283 59283 4478 0 4478 4478 4478 OTHER 541700 40201 40201 40201 8183725 7500494 0 4478 20000 20000 5000 5000 310083 310083 205191 205191 3520 3520 25809 25809 36276 36276 1868 1868 7375 7375 12254 12254 6040 6040 56326 32987 23339 14049 14049 19300 6650 12650 22644 22644 538112 528968 9144 142022 121218 20804 4210 4210 24772 24772 SITE EXPENSES 3271237 3271237 CLINICAL TRIAL COORDINA 2783875 2783875 PRINCIPAL INVESTIGATORS 333387 333387 OUTSIDE SERVICES 261248 259454 1794 71785 52200 19585 8176383 7414976 761407 0 1369511 1370714 2007119 1424965 8700 11140 25342 15732 7998 9610 2093478 2622033 5486806 5438462 2337343 2148234 78855 62679 2416198 2210913 X 3016001 3162771 54607 64778 3070608 3227549 5486806 5438462 7342 149599 0 X X 0 1 X 1 0 X 135492 119095 118359 432500 678753 1484199 3580397 6872077 7406712 8950684 7401010 34210880 3715889 6991172 7525071 9383184 8079763 35695079 0 0 0 35695079 59283 59283 59283 59283 19381 15834 20950 25786 40201 122152 3735270 7007006 7546021 9408970 8179247 35876514 0.99490 0.00170 X 25342 15732 9610 9610 X 8333324 149599 149599 8183725 0 8183725 8176383 0 8176383 0 8176383 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. 1 VANDERBILT UNIVERSITY 1501 NORTH PLANO RD SUITE 100 RICHARDSON TX 75081 620476822 DONATION TO THE CLINIC THE COOPER HEALTH SYSTEM ONE COOPER PLAZA CAMDEN NJ 08103 210634462 501(C)(3) 10000 SEED FUND GRANT THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK PO BOX 26453 NEW YORK NY 10087 135598093 501(C)(3) 10000 SEED FUND GRANT 2 0 PART I, LINE 2: WITH REGARD TO MONITORING - THE ORGANIZATION DID NOT RESTRICT THE FUNDS, THEREFORE THERE WAS NO MONITORING REQUIRED. FORM 990, PART VI, SECTION B, LINE 11B 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 INTEREST 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 FORM 990, PART XII, LINE 2C NO CHANGE FROM THE PRIOR YEAR.