2025-10-21T13:38:04-05:00 2024-12-31 161131146 BONADIO & CO LLP 171 SULLYS TRAIL PITTSFORD NY 14534 990 2024-01-01 160836536 MARY M GOOLEY HEMOPHILIA CENTER INC MARY 5859225700 1415 PORTLAND AVE 500 ROCHESTER NY 14621 THOMAS WILMARTH PRESIDENT & CEO 5859225700 2025-10-15 1 0 MICHAEL VOLLMER P01322902 5853811000 2025-10-15 2024 2025-03-06 01:10:19Z THOMAS WILMARTH 1415 PORTLAND AVE 500 ROCHESTER NY 14621 33891293 0 X WWW.HEMOCENTER.ORG X 1959 NY THE TREATMENT AND CURE OF HEMOPHILIA AND OTHER RELATED BLOOD DISORDERS. 7 7 10 14 0 0 93819 132920 24630913 27016530 634374 1517643 2993 1375 25362099 28668468 0 0 0 0 1133059 1430948 0 0 87383 18732540 20118320 19865599 21549268 5496500 7119200 28705288 35957224 3347755 3273273 25357533 32683951 X TO PROVIDE EDUCATION, TREATMENT, RESEARCH, ADVOCACY AND SUPPORTIVE PROGRAMS TO IMPROVE THE LIVES OF PEOPLE AFFECTED BY BLEEDING DISORDERS AND IRON OVERLOAD. 0 0 20420756 26981763 THE CENTER HAS APPROXIMATELY 366 BLEEDING DISORDER PATIENTS ON ITS ACTIVE CASELOAD. IN 2024, 231 UNIQUE PATIENTS WITH HEMOPHILIA, VON WILLEBRAND DISEASE AND OTHER RARE CLOTTING DEFICIENCIES WERE EVALUATED AND TREATED. 66 PATIENTS WITH MODERATE AND SEVERE HEMOPHILIA ATTEND SPECIALIZED COMPREHENSIVE CARE CLINICS AT LEAST ONCE EACH YEAR, RECEIVING CONSULTATION FROM AN ONSITE HEMATOLOGIST, NURSE COORDINATOR, SOCIAL WORKER, PHYSICAL THERAPIST, ORTHOPEDIC SURGEON AND DENTIST. THE CENTER HAS AN ON-SITE SPECIALTY PHARMACY THAT PROVIDES CLOTTING FACTOR TO 52 HEMOPHILIA PATIENTS VIA OUR HOME INFUSION PROGRAM. 314047 34767 THE CENTER PROVIDES SPECIALIZED EVALUATION AND CARE FOR PATIENTS WITH HEREDITARY HEMOCHROMATOSIS AND IRON OVERLOAD. TYPICALLY, PATIENTS WITH THESE CONDITIONS RECEIVE REGULAR THERAPEUTIC PHLEBOTOMIES TO DIMINISH EXCESS IRON STORED IN THEIR BODIES, DIMINISHING RISK OF PERMANENT ORGAN DAMAGE. THE CENTER SERVES APPROXIMATELY 213 HEMOCHROMATOSIS/IOD PATIENTS. 72743 0 THE CENTER HAS BEEN ACTIVELY INVOLVED IN RESEARCH AND CLINICAL TRIALS IN AN EFFORT TO CULTIVATE ADVANCES IN HEMOPHILIA, VON WILLEBRAND DISEASE AND HEMOCHROMATOSIS. IN 2024, THE CENTER PARTICIPATED IN 2 OPEN RESEARCH STUDIES ADDRESSING A WIDE RANGE OF CLINICAL AREAS AND OUTCOMES. IN ADDITION, THE CENTER WORKS CLOSELY WITH THE CENTER FOR DISEASE CONTROL (CDC) AND THE AMERICAN THROMBOSIS AND HEMOSTASIS NETWORK (ATHN) REGISTRIES, COLLECTING DATA AS PART OF A NATIONAL EFFORT TO BETTER UNDERSTAND AND CARE FOR RARE BLEEDING DISORDERS. 81858 0 REVENUES AND EXPENSES FOR NATIONAL HEMOPHILIA FOUNDATION CHAPTER ACTIVITIES. 81858 0 20889404 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 0 1 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 7 0 10 1 0 0 0 0 0 0 0 0 0 0 0 0 X 7 7 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 NY X GREGORY LIGHTHOUSE 5859225700 1415 PORTLAND AVE SUITE 500 ROCHESTER NY 14621 NICHOLAS FARRIS MD BOARD MEMBER 1.00 X 0 0 0 ROBIN REID MD NON-VOTING BOARD MEMBER 1.00 X 0 0 0 RONALD SHAM MD BOARD MEMBER 1.00 X 0 0 0 SAMANTHA VITAGLIANO DMD FORMER CHAIRPERSON 1.00 X 1000 0 0 DAN GURELL TREASURER 1.00 X X 0 0 0 CHRISTINE HAY MD SECRETARY 1.00 X X 0 0 0 ANDREW PARK CHAIRPERSON 1.00 X X 0 0 0 LARRY DENK MD BOARD MEMBER 1.00 X 0 0 0 PETER KOUIDES MD NON-VOTING BOARD MEMBER 1.00 X 0 0 0 TIMOTHY ABBAMONTE DDS BOARD MEMBER 1.00 X 0 0 0 GREGORY LIGHTHOUSE CPA CFO 40.00 X 174803 0 21065 THOMAS WILMARTH PRESIDENT & CEO 40.00 X 213886 0 14530 ERIC IGLEWSKI LMSW VP OF CLINICAL SERVICES 40.00 X 146970 0 24556 TARA VEITH MSN FNP-C NURSE PRACTITIONER 40.00 X 132691 0 1613 669350 0 61764 4 0 1 0 ROCHESTER GENERAL HOSPITAL DEPARTMENT OF 1425 PORTLAND AVE ROCHESTER NY 14621 CONTRACTED HEMATOLOGISTS 306324 1 6862 26002 100056 132920 HEMOPHILIA & OTHER BLEEDING DISOR 621400 26981763 26981763 HEMOCHROMATOSIS 621400 34767 34767 27016530 754822 754822 5980788 5217967 762821 762821 762821 6233 26002 4858 1375 1375 28668468 27016530 0 1519018 657425 266082 334056 57287 518924 488515 26966 3443 131076 112807 12924 5345 46894 43901 1094 1899 76629 51563 21220 3846 4384 4384 20400 20400 367763 344414 17867 5482 47948 44010 3938 145228 91150 47376 6702 70892 68094 2798 58415 39722 15772 2921 45300 45300 BLOOD PRODUCTS 19221397 19221397 CREDIT LOSSES 107628 107628 OTHER 28965 10121 18386 458 21549268 20889404 572481 87383 45000 45000 2089913 2442611 7223 17100 2050201 1905400 859552 1277904 262780 534208 577689 319931 288951 257758 21586096 28061501 1515572 1415742 28705288 35957224 1125926 1160645 2221829 2112628 3347755 3273273 X 25255705 32575447 101828 108504 25357533 32683951 28705288 35957224 X 7119200 229701 -22483 X 0 1 X 1 0 X 145666 94653 101016 100574 106918 548827 19966185 23235961 22979606 24630913 27016530 117829195 20111851 23330614 23080622 24731487 27123448 118378022 0 0 0 118378022 43143 75156 188470 465900 754822 1527491 43143 75156 188470 465900 754822 1527491 14915 14915 20169909 23405770 23269092 25197387 27878270 119920428 0.98710 0.99260 0.01270 0.00710 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 0 0 0 1 3691 0 0 3691 0 PART II-B, LINE 1: REPRESENTING THE ISSUES AND PROPOSED LEGISLATION REGARDING BLEEDING DISORDERS TO LEGISLATORS. 1078848 73126 1151974 972383 106465 1078848 1168657 -196274 972383 1053654 115003 1168657 954885 98769 1053654 0.91020 0.02830 0.06150 0 0 427791 249833 177958 149898 70098 79800 257758 LIABILITY FOR PENSION BENEFITS 650539 OPERATING LEASE LIABILITY 1462089 2112628 28880544 229701 -22483 207218 28673326 -4858 -4858 28668468 21554126 4858 4858 21549268 0 21549268 PART V, LINE 4: THE PERMANENTLY RESTRICTED ENDOWMENT FUND HAS BEEN ESTABLISHED FROM RECEIPT OF DONOR GIFTS WITH RESTRICTIONS THAT THE RESOURCES BE MAINTAINED PERMANENTLY, BUT THE CENTER IS PERMITTED TO USE OR EXPEND PART OR ALL OF THE INCOME (OR OTHER ECONOMIC BENEFITS) DERIVED FROM THE DONATED ASSETS FOR OPERATIONS. ADDITIONALLY, THE BOARD DESIGNATED ENDOWMENT FUNDS WERE ESTABLISHED FOR A VARIETY OF PURPOSES, INCLUDING PENSION CONTRIBUTIONS, MARKETING, RESEARCH, TWINNING, AND TO ASSIST IN FUNDING PROJECTS WITH THE HEMOPHILIA FOUNDATION OF UPSTATE NEW YORK, INC. PART XI, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN FUNDED STATUS OF PENSION PLAN -22,483. PART XI, LINE 4B - OTHER ADJUSTMENTS: WALK RELATED ITEMS -4,858. PART XII, LINE 2D - OTHER ADJUSTMENTS: WALK RELATED ITEMS 4,858. WALK 32235 26002 6233 4858 32235 26002 6233 4858 4858 1375 X X X X 0 0 0 0 0 0 0 0 0 THOMAS WILMARTH PRESIDENT & CEO 194786 0 19100 0 0 0 12680 0 1850 0 228416 0 0 0 GREGORY LIGHTHOUSE CPA CFO 164903 0 9900 0 0 0 8681 0 12384 0 195868 0 0 0 ERIC IGLEWSKI LMSW VP OF CLINICAL SERVICES 138870 0 8100 0 0 0 24556 0 0 0 171526 0 0 0 FORM 990, PART VI, SECTION B, LINE 11B THE 990 WILL BE EMAILED TO ALL FINANCE AND AUDIT COMMITTEE MEMBERS. MANAGEMENT WILL DISCUSS AND SEND ALONG A SUMMARY AND INVITE QUESTIONS. THE BOARD IS THEN EMAILED THE 990 FOR THEIR REVIEW PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY BOARD MEMBERS AND EMPLOYEES ARE REQUIRED TO COMPLETE CONFLICT-OF-INTEREST STATEMENTS. THE COMPLIANCE COMMITTEE THEN REVIEWS THE STATEMENTS AND ANY CONFLICT IS THEN COMMUNICATED TO THE BOARD. FORM 990, PART VI, SECTION B, LINE 15 ANNUALLY THE EXECUTIVE COMMITTEE REVIEWS THE COMPENSATION OF LOCAL CHIEF EXECUTIVE OFFICERS AT SIMILAR ORGANIZATIONS AND REVIEWS PERFORMANCE AND GOAL ACHIEVEMENT TO DETERMINE SALARY ADJUSTMENTS OF THE CHIEF EXECUTIVE OFFICER. FORM 990, PART VI, SECTION C, LINE 19 ALL REQUIRED PUBLIC DISCLOSURE DOCUMENTS ARE MADE AVAILABLE AT THE CFO'S OFFICE DURING NORMAL BUSINESS HOURS. FORM 990, PART XI, LINE 9: CHANGE IN FUNDED STATUS OF PENSION PLAN -22,483.