2025-09-22T08:36:26-05:00 2024-12-31 474526160 EFPR GROUP CPAS PLLC 100 SOUTH CLINTON AVE SUITE 1500 ROCHESTER NY 14604 990 2024-01-01 455557987 HUNTINGTON STUDY GROUP LTD HUNT 8004877671 95 ALLENS CREEK BLDG 1 132 ROCHESTER NY 14618 MICHAEL LENTINE CFO 8004877671 2025-09-17 1 1 CHRISTOPHER JOHNSTON P00896198 5854278900 2025-09-17 2024 2025-03-06 01:10:19Z DANIEL CLAASSEN MD MS 95 ALLENS CREEK BLDG 1 132 ROCHESTER NY 14618 5041772 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. 4 3 36 211 0 0 507661 347233 5650926 4418045 149088 220465 52205 56029 6359880 5041772 0 0 0 0 1774063 1601686 0 0 0 4790022 3315216 6564085 4916902 -204205 124870 8173182 8061578 1899350 1232734 6273832 6828844 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 2955272 4694539 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. 2955272 1 1 0 0 0 0 0 0 0 0 1 0 0 1 0 1 0 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 18 0 1 36 1 0 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 8004877671 95 ALLENS CREEK BLDG 1 132 ROCHESTER NY 14618 JONI STEINMAN TREASURER (UNTIL NOV. 2024) 1.00 X X 0 0 0 SHARI KINEL JD CEO/SECRETARY (UNTIL 7/3/24) 40.00 X X 252692 0 29571 PETER SCHMIDT PHD CHAIR 1.00 X X 0 0 0 WILLIAM HOH VICE CHAIR 1.00 X X 0 0 0 ARVIND SREEDHARAN BOARD MEMBER 1.00 X 0 0 0 DANIEL CLAASSEN CEO (BEGIN 9/1/24) 40.00 X X 155934 0 5700 MICHAEL LENTINE CFO 40.00 X 226668 0 9077 ANNE VAN DUSEN COO 40.00 X 259537 0 20080 ELIZABETH DE BLIECK SR. DIR, PROJECT MANAGEMENT 40.00 X 146924 0 7268 ELISE KAYSON-RUBIN VP OF CLINICAL OPERATIONS 40.00 X 125483 0 11231 MELISSA AUSTIN DIR, CLINICAL OPERATIONS 40.00 X 132625 0 27848 KELLEY MORGAN SR. PROJECT MANAGER 40.00 X 121595 0 18739 1421458 0 129514 13 0 1 0 UNIVERSITY OF ROCHESTER CHETCCTC 265 CRITTENDEN BLVD ROCHESTER NY 14642 PROJECT & DATA MANAGEMENT 623452 CINCINNATI HYATT OPERATING 151 W FIFTH ST CINCINNATI OH 45202 CONFERENCE SERVICES 310791 UNIVERSITY OF TEXAS PO BOX 301418 DALLAS TX 75303 SCIENTIFIC LEADERSHIP 155250 HEREDITARY NEUROLOGICAL DISEASE CENTRE 9300 E 29TH ST NORTH SUITE 350 WICHITA KS 67226 SITE FEES 145403 UPSTREAM VISION 2715 BRANSFORD AVENUE NASHVILLE TN 37204 PLATFORM FEES 124558 6 347233 347233 PROGRAM SERVICE REVENU 541700 3882430 3882430 LICENSE FEES 541700 288836 288836 ANNUAL MEETING REVENUE 541700 126779 126779 MANAGEMENT FEE 541700 120000 120000 4418045 220465 220465 OTHER REVENUE 541700 56029 56029 56029 5041772 4694539 0 0 679642 679642 687517 687517 6697 6697 227830 227830 57443 57443 16000 16000 269683 179588 90095 39685 39685 25110 25110 278153 278153 29400 29400 2043 2043 10004 10004 147084 147084 SITE EXPENSES 2170718 2170718 ANNUAL MEETING 562782 562782 LICENSES AND FEES 42088 42088 TELEPHONE 32792 32792 -367769 2499 -370268 4916902 2955272 1961630 0 1010052 47928 935116 512154 90111 63324 92429 59536 25103 32893 5717150 6332571 395650 1072708 8173182 8061578 1092825 378019 806525 854715 1899350 1232734 X 6273832 6828844 6273832 6828844 8173182 8061578 124870 430143 -1 0 X X 0 1 X 1 0 X 267472 422109 343063 507661 347233 1887538 10738229 9308123 6190676 5650926 4418045 36305999 11005701 9730232 6533739 6158587 4765278 38193537 0 0 0 38193537 72054 128373 111436 149088 220465 681416 72054 128373 111436 149088 220465 681416 89656 108891 37035 52205 56029 343816 11167411 9967496 6682210 6359880 5041772 39218769 0.97390 0.98150 0.01740 0.01120 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 92429 59536 32893 32893 DUE FROM RELATED PARTY 1072708 1072708 X 5471915 430143 430143 5041772 0 5041772 4916902 0 4916902 0 4916902 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 CEO/SECRETARY (UNTIL 7/3/24) 252692 0 0 0 0 0 12400 0 17171 0 282263 0 0 0 ANNE VAN DUSEN COO 259537 0 0 0 0 0 10707 0 9373 0 279617 0 0 0 MICHAEL LENTINE CFO 226668 0 0 0 0 0 9077 0 0 0 235745 0 0 0 DANIEL CLAASSEN CEO (BEGIN 9/1/24) 155934 0 0 0 0 0 0 0 5700 0 161634 0 0 0 MELISSA AUSTIN DIR, CLINICAL OPERATIONS 132625 0 0 0 0 0 6828 0 21020 0 160473 0 0 0 ELIZABETH DE BLIECK SR. DIR, PROJECT MANAGEMENT 146924 0 0 0 0 0 7268 0 0 0 154192 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 10449842 2509769 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 120000 ACTUAL