2021-11-15T07:29:37-06:00 2020-12-31 474526160 EFPR GROUP CPAS PLLC 100 SOUTH CLINTON AVE SUITE 1500 ROCHESTER NY 146041801 990 2020-01-01 455557987 HUNTINGTON STUDY GROUP LTD HUNT 8004877671 95 ALLENS CREEK BLDG 1 NO 132 ROCHESTER NY 14618 SHARI KINEL EXECUTIVE DIRECTOR 8004877671 2021-11-12 1 SHARI KINEL 999009999 CHRISTOPHER JOHNSTON P00896198 5854278900 2021-11-12 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z SHARI KINEL 95 ALLENS CREEK BLDG 1 NO 132 ROCHESTER NY 14618 11167411 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. 7 6 11 52 0 0 461596 267472 12521276 10738229 69622 72054 58067 89656 13110561 11167411 0 0 0 0 829782 839906 0 0 0 11958810 9340406 12788592 10180312 321969 987099 7722690 7657910 3859881 2461013 3862809 5196897 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 9016983 10899939 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 CLINICAL TRIALS, HAS BROUGHT THE ONLY TWO FDA-APPROVED HD TREATMENTS (TETRABENAZINE AND DUTETRABENAZINE) 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. 9016983 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 1 44 0 1 11 1 0 0 0 0 0 0 0 0 0 0 0 0 X 7 6 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 NY X THE ORGANIZATION 8004877671 95 ALLENS CREEK BLDG 1 NO 132 ROCHESTER NY 14618 ANDREW FEIGIN MD CHAIR 10.00 X X 50000 0 0 ELISE KAYSON MS RN ANP CO-CHAIR 10.00 X X 25000 0 0 JONI STEINMAN TREASURER 2.00 X X 0 0 0 SHARI KINEL JD EXEC. DIRECTOR/SECRETARY 40.00 X X 172807 0 33218 JULIE STOUT BS MA PHD BOARD MEMBER 0.25 X 0 0 0 PETER SCHMIDT PHD BOARD MEMBER 0.25 X 0 0 0 ERIC SIEMERS MD BOARD MEMBER 0.25 X 0 0 0 WILLIAM HOH BOARD MEMBER 0.25 X 0 0 0 ANNE VAN DUSEN DIRECTOR OF OPERATIONS 40.00 X 132479 0 7375 KEVIN GREGORY SR DIR OF EDUCATION & COMM 40.00 X 141716 0 19451 522002 0 60044 3 0 1 0 RAND CORPORATION PO BOX 2138 SANTA MONICA CA 90407 DATA COLLECTION & ANALYSIS 238994 MICHAEL J O'BRIEN 5733 POINT PLEASANT PIKE DOYLESTOWN PA 18902 CONSULTING 139638 UNIVERSITY OF COLORADO PO BOX 910238-151274 DENVER CO 80291 CLINICAL TRIAL SERVICES 115295 INTRADO DIGITAL MEDIA LLC 11808 MIRACLE HILLS DRIVE OMAHA NE 68154 VIRTUAL PLATFORM 106575 TEKSYSTEMS GLOBAL SERVICES PO BOX 402042 ATLANTA GA 30384 DIGITAL SERVICE 102544 5 267472 267472 PROGRAM SERVICE REVENUE 541700 10067215 10067215 LICENSE FEES 541700 558864 558864 MANAGEMENT FEE 541700 65000 65000 ANNUAL MEETING REVENUE 541700 47150 47150 10738229 72054 72054 OTHER REVENUE 541700 89656 89656 89656 11167411 10899939 0 0 420879 420879 360305 360305 8907 8907 49815 49815 13788 13788 9325 9325 786471 733307 53164 49190 49190 24336 24336 91841 91841 46076 46076 4939 4939 2787 2787 3112 3112 49216 49216 SITE EXPENSES 8110452 8110452 ANNUAL MEETING 119440 119440 LICENSES AND FEES 15632 15632 TELEPHONE 9207 9207 4594 4594 10180312 9016983 1163329 0 856308 973246 183651 180997 3810076 2174275 18989 48215 29806 26003 6915 3803 2846751 4250396 26978 7722690 7657910 3793080 2254073 66801 72920 134020 3859881 2461013 X 3846569 5196897 16240 0 3862809 5196897 7722690 7657910 987099 346989 0 X X 0 1 X 1 0 X 432500 678753 491525 461596 267472 2331846 8950684 7401010 9148436 12521276 10738229 48759635 9383184 8079763 9639961 12982872 11005701 51091481 0 0 0 51091481 59283 73566 69622 72054 274525 59283 73566 69622 72054 274525 25786 40201 39251 58067 89656 252961 9408970 8179247 9752778 13110561 11167411 51618967 0.98980 0.99190 0.00530 0.00420 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 29806 26003 3803 3803 X 11514400 346989 346989 11167411 0 11167411 10180312 0 10180312 0 10180312 PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM FEDERAL INCOME TAX UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. HOWEVER, INCOME FROM CERTAIN ACTIVITIES NOT DIRECTLY RELATED TO THE ORGANIZATION'S TAX-EXEMPT PURPOSE IS SUBJECT TO TAXATION AS UNRELATED BUSINESS INCOME. 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. 0 0 0 0 0 0 0 0 0 SHARI KINEL JD EXEC. DIRECTOR/SECRETARY 172807 0 0 0 0 0 0 0 33218 0 206025 0 0 0 KEVIN GREGORY SR DIR OF EDUCATION & COMM 141716 0 0 0 0 0 0 0 19451 0 161167 0 0 0 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. HSG CLINICAL RESEARCH INC 95 ALLENS CREEK RD STE 132 ROCHESTER NY 14618 851613727 WHOLLY-OWNED SUBSIDIARY TO CONDUCT CLINICAL TRIALS NY HUNTINGTON STUDY GROUP LTD C 541776 1807699 1.00000 1 0 0 0 0 0 0 0 0 0 0 0 1 0 1 1 0 0 0 0 HSG CLINICAL RESEARCH INC L 65000 ACTUAL