2024-11-15T12:06:51-06:00 2023-12-31 133628255 CONDON O'MEARA MCGINTY & DONNELLY LLP ONE BATTERY PARK PLAZA 7TH FL NEW YORK NY 10004 990 2023-01-01 411855605 HYPERTROPHIC CARDIOMYOPATHY ASSOCIATION HYPE 9739837429 66 FORD ROAD SUITE 213B DENVILLE NJ 07834 LISA SALBERG CEO 9739837429 2024-11-14 1 0 ALEXANDER LAZZARUOLO P01775353 2126617777 2023 2024-10-15 13:58:12Z LISA SALBERG 66 FORD ROAD SUITE 213B DENVILLE NJ 07834 1409455 0 X WWW.4HCM.ORG X 1996 NJ TO PROVIDE SUPPORT, ADVOCACY AND EDUCATION TO PATIENTS, FAMILIES, THE MEDICAL COMMUNITY AND THE PUBLIC ABOUT HYPERTROPHIC CARDIOMYOPATHY, WHILE SUPPORTING RESEARCH AND FOSTERING THE DEVELOPMENT OF TREATMENTS. 13 12 13 100 0 0 833561 979965 261455 247716 1204 10816 10665 87765 1106885 1326262 0 0 0 0 452500 605349 0 0 58068 343817 475127 796317 1080476 310568 245786 1085584 1398852 173124 246892 912460 1151960 X TO PROVIDE SUPPORT, ADVOCACY AND EDUCATION TO PATIENTS, FAMILIES, THE MEDICAL COMMUNITY AND THE PUBLIC ABOUT HYPERTROPHIC CARDIOMYOPATHY, WHILE SUPPORTING RESEARCH AND FOSTERING THE DEVELOPMENT OF TREATMENTS. 0 0 227422 142181 HCMA RECOGNIZED CENTER OF EXCELLENCE PROGRAM:HYPERTROPHIC CARDIOMYOPATHY IS A COMPLICATED DIAGNOSIS REQUIRING SPECIALTY MANAGEMENT STRATEGIES. HCM IMPACTS AN ESTIMATED ONE IN 250 IN THE GENERAL POPULATION. IT IS CURRENTLY SIGNIFICANTLY UNDERDIAGNOSED, WITH ONLY AN ESTIMATED 150,000 INDIVIDUALS IN THE UNITED STATES CURRENTLY IN TREATMENT FOR THE DISEASE. CARE FOR HCM REQUIRES MULTIPLE SUBSPECIALTY CARE MODALITIES INCLUDING BUT NOT LIMITED TO IMAGING CARDIOLOGY, INTERVENTIONAL CARDIOLOGY, ELECTROPHYSIOLOGY, CARDIAC SURGERY, GENETICS, PSYCHOSOCIAL SERVICES, AND CARDIAC OVERSIGHT FOR NONCARDIAC PROCEDURES, INCLUDING PREGNANCY ORTHOPEDIC ISSUES AND OTHER GENERAL MEDICAL NEEDS. THE HCMA HAS 50 RECOGNIZED CENTERS OF EXCELLENCE PROGRAMS IN THE UNITED STATES, WITH 17 UNDER REVIEW AND INTERNATIONAL PROGRAMMING BEING DEVELOPED. CREATION OF THESE PROGRAMS TAKES RELATIONSHIP BUILDING, PROGRAM EVALUATION AND ADMINISTRATIVE SUPPORT. PATIENTS CARED FOR IN THIS MODEL HAVE BETTER OUTCOMES THAN THOSE TREATED IN LOW-VOLUME CENTERS. THIS PROGRAM DIRECTLY LEADS TO PATIENT SAFETY AND OPTIMAL OUTCOMES. 112804 3634 HCMA PATIENT INTAKE AND NAVIGATION SERVICES:THE HCMA ALLOWS EACH INDIVIDUAL DIAGNOSED WITH THE CONDITION TO CONTACT THE OFFICE (PHONE, EMAIL , IN PERSON, OR ONLINE THROUGH VIDEO CONFERENCING) AND PARTICIPATE IN AN INTAKE CALL, WHICH THEN ALLOWS FOR UNDERSTANDING WHERE THE INDIVIDUAL IS COMING TO US REGARDING THEIR DISEASE PROCESS, ACCESS TO SPECIALTY CARE, EMOTIONAL SUPPORT, ADVOCACY SERVICES, AND MORE. THIS IS A VERY LABOR-INTENSIVE PORTION OF OUR WORK, REQUIRING INDIVIDUAL COMMUNICATION AND FOLLOW-UP. WE HAVE USED THIS MODEL OF SERVICE SINCE OUR FOUNDING IN 1996. IT HAS EVOLVED AS THE ORGANIZATION HAS, AND TO DATE, 20,000 INDIVIDUALS HAVE PARTICIPATED IN THE PROCESS. 37739 37739 PATIENT EDUCATION BIGHEARTED WARRIOR WEBINAR PROGRAM:IN 2020, WE MOVED TO A VIRTUAL EDUCATION MODEL, WHICH HAS NOW SPANNED NEARLY FOUR YEARS WITH OVER 30 SEGMENTS OF EDUCATIONAL MATERIAL CREATED. EACH WEBINAR IS ORGANIZED BY EITHER THE HCMA-RECOGNIZED CENTER OR THE SUBTOPICS SUCH AS PEDIATRICS, GENETICS, OR OTHER SIMILAR TOPICS. THESE PROGRAMS ARE FREE TO ALL AND HAVE PROVIDED AN EDUCATIONAL OPPORTUNITY REGARDLESS OF GEOGRAPHIC LOCATION. THESE PROGRAMS ARE HELD TYPICALLY MONTHLY AND SOMETIMES MORE OFTEN THAN THAT. 339057 69270 OTHER PROGRAMS INCLUDING CLINICAL TRIALS, COMMUNITY ENGAGEMENT, OTHER CLIENT AND PARTNER SERVICES. 339057 69270 717022 1 1 0 1 0 0 0 0 0 0 0 0 0 1 1 0 1 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 0 0 0 1 9 0 1 13 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 13 12 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 NJ X THE ORGANIZATION 9739837429 66 FORD ROAD SUITE 213B DENVILLE NJ 07834 LISA SALBERG CEO/VICE CHAIR 40.00 X X 98908 0 6092 GORDON FOX PHD CHAIR 10.00 X X 0 0 0 ADAM SALBERG SECRETARY 1.00 X X 0 0 0 ROB LORFINK TREASURER 1.00 X X 0 0 0 AMIT KALIA PHD DIRECTOR 2.00 X 0 0 0 ROSEMARY CONLON DIRECTOR 1.00 X 0 0 0 BILLUR DOWSE DIRECTOR 10.00 X 0 0 0 MARTIN MARON MD DIRECTOR 2.00 X 0 0 0 MIKE LYNCH MD DIRECTOR 1.00 X 0 0 0 KEVIN O'CONNOR MD DIRECTOR 1.00 X 0 0 0 ISAAC RODRIGUEZ-CHAVEZ PHD MHS MS DIRECTOR 1.00 X 0 0 0 BILL ROSSI DIRECTOR 1.00 X 0 0 0 RICHARD MELIA PHD EMERITUS DIRECTOR 1.00 X 0 0 0 98908 0 6092 0 0 0 0 0 190784 789181 10229 979965 CONTRACTED SERVICES 611710 247716 247716 247716 10816 10816 10229 10229 0 0 155621 72964 82657 82657 3634 0 3634 3634 OTHER 900099 1474 1474 1474 1326262 252824 0 93473 105000 63559 35363 6078 417838 248030 145569 24239 34900 27766 5183 1951 47611 37879 7071 2661 5244 380 4864 46420 46420 103254 81615 18302 3337 45886 45353 412 121 103343 72541 23150 7652 6888 5572 918 398 35858 27085 6546 2227 37727 34017 2816 894 50365 49203 811 351 7603 6126 1031 446 PROGRAM EXPENSES 15980 8829 6930 221 OTHER EXPENSES 9067 9067 FUNDRAISING 7492 7492 1080476 717022 305386 58068 879469 1012481 206115 171546 4564 121605 0 88656 1085584 1398852 23096 52539 149778 111333 250 83020 173124 246892 X 810584 1071188 101876 80772 912460 1151960 1085584 1398852 245786 5057 -11343 0 X 0 1 X 1 0 X 320503 390955 593489 826822 979965 3111734 320503 390955 593489 826822 979965 3111734 879404 2232330 6 20980 1204 10816 33006 1474 1474 3146214 251350 0.70950 0.74150 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 3834 0 0 3834 0 0 SECURITY DEPOSIT 5636 RIGHT-OF-USE ASSET OPERATING LEASE 83020 88656 OPERATING LEASE PAYABLE 83020 83020 1331319 5057 5057 1326262 0 1326262 1080476 0 1080476 0 1080476 ANNUAL PATIENT MEETING 155621 155621 72964 155621 155621 72964 72964 82657 FORM 990, PART VI, SECTION A, LINE 2 LISA SALBERG (CEO) IS RELATED TO TWO BOARD MEMBERS ADAM SALBERG AND LYNN PERRY. ALL ARE FAMILY MEMBERS. FORM 990, PART VI, SECTION B, LINE 11B A COPY OF THE FORM 990 IS PROVIDED TO THE GOVERNING BODY PRIOR TO FILING WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS ARE REQUIRED TO REVIEW AND ACKNOWLEDGE THE ORGANIZATION'S CONFLICT OF INTEREST POLICY ON AN ANNUAL BASIS. CONFLICTS ARE MANAGED BY THE BOARD AS SITUATIONS ARISE. FORM 990, PART VI, SECTION B, LINE 15A HCMA FOUNDER AND CEO CONDUCTEDA SALARY INVESTIGATIONOF CEOS IN SIMILARSIZED NON-PROFITS WITH SIMILAR BUDGET SIZES. SHE PRESENTED THESE FINDINGS TO THE BOARD CHAIR AND THEN THE FULL BOARD OF DIRECTORS. THEFULLBOARD REVIEWED THE SALARY COMPARISONS AND ADOPTED THE FOUNDER AND CEO'S CURRENT SALARY. FORM 990, PART VI, SECTION C, LINE 18 THE ORGANIZATION MAKES INFORMATION AVAILABLE TO THE PUBLIC BY WRITTEN REQUEST. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES INFORMATION AVAILABLE TO THE PUBLIC BY WRITTEN REQUEST.