2024-06-18T15:09:37-05:00 2023-12-31 410746749 CLIFTONLARSONALLEN LLP 150 S WARNER ROAD SUITE 310 KING OF PRUSSIA PA 19406 990 2023-01-01 043447959 ADULT CONGENITAL HEART ASSOCIATION ADUL 2158491260 280 NORTH PROVIDENCE ROAD 6 MEDIA PA 19063 MARK ROEDER PRESIDENT AND CEO 2158491260 2024-06-14 1 MARK ROEDER 999009999 0 MALLORY GOOD P01704765 2156433900 2024-06-12 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z MARK ROEDER 280 NORTH PROVIDENCE ROAD 6 MEDIA PA 19063 2407696 0 X WWW.ACHAHEART.ORG X 1998 PA TO EMPOWER THE CHD COMMUNITY BY ADVANCING ACCESS TO RESOURCES AND SPECIALIZED CARE. 21 21 18 500 0 0 1589871 2169463 152121 210517 -43818 27716 0 0 1698174 2407696 70000 65000 0 0 1237436 1428976 0 0 299779 700053 496380 2007489 1990356 -309315 417340 1503657 2033233 310096 372986 1193561 1660247 X ADULT CONGENITAL HEART ASSOCIATION (ACHA) IS TO EMPOWER THE CONGENITAL HEART DISEASE COMMUNITY BY ADVANCING ACCESS TO RESOURCES AND SPECIALIZED CARE THAT IMPROVE PATIENT-CENTERED OUTCOMES. 0 0 714540 0 ACCREDITATION, SUPPORT, EDUCATION AND AWARENESS ACTIVITIES:-MEDICAL CENTER ACCREDITATION PROGRAM: THE ACCREDITATION PROGRAM STARTED IN 2014. AS OF DECEMBER 2023, THERE ARE A TOTAL OF 50 ACCREDITED SITES IN THE US. THERE ARE SEVERAL ADDITIONAL SITES CURRENTLY IN VARIOUS STAGES OF THE ACCREDITATION PROCESS.-PEER SUPPORT PROGRAM: ACHA MANAGES VOLUNTEERS TO PROVIDE ONE ON ONE SUPPORT TO ACHD PATIENTS SEEKING SUCH HELP.(CONTINUED ON SCHEDULE O).- EDUCATIONAL MATERIALS AND WEBINARS: THROUGH ITS WEBSITE, WEBINARS, AND SOCIAL MEDIA CHANNELS, ACHA PROVIDES 24-HOUR ACCESS TO RELEVANT, UP-TO-DATE INFORMATION AND RESOURCES. FROM THE WEBINARS PATIENTS LEARN MORE ABOUT SPECIFIC CHD CONDITIONS AND DEFECTS, AND THE ISSUES THAT AFFECT THEIR LIVES. LEADING EXPERTS AND ADVOCATES COVER A RANGE OF INTERESTING, DIVERSE, AND TIMELY TOPICS IN PATIENT-FRIENDLY LANGUAGE.- ACHA REGIONAL CONFERENCES: A REGIONAL CONFERENCE WAS HELD IN PERSON (TENNESSEE) DURING 2023. THREE IN-PERSON REGIONAL CONFERENCES ARE CURRENTLY BEING PLANNED FOR 2024. EACH CONFERENCE BEGINS WITH A DYNAMIC PARTNERSHIP WITH PATIENTS, PROFESSIONALS, AND INSTITUTIONS. EACH EVENT IS TAILORED TO REGIONAL NEEDS AND CAN INCLUDE: AN EDUCATIONAL PRESENTATION (TOPICS INCLUDE ACHA 101, ACHD OVERVIEW, DEFECT SPECIFIC INFORMATION, ETC.), GROUP ROUNDTABLES, AND EDUCATION MATERIALS AND RESOURCES. ACHD CARE GUIDELINES ARE REVIEWED AT EVERY SESSION TO ENCOURAGE LIFELONG CARE. - ACHD CLINIC DIRECTORY: ACHA EXPANDED ITS ONLINE LISTING WITH CLOSE TO 400 ACHD CLINICS (INCLUDING SATELLITE CLINICS) IN THE UNITED STATES AND CANADA; THE DIRECTORY CONTINUES TO BE THE ONLY RESOURCE OF ITS KIND AVAILABLE IN THE UNITED STATES.- ACHD PATIENT DIRECTORY: THE ACHA ACHD PATIENT RESOURCE DIRECTORY WENT LIVE IN 2023 AND PROVIDES INFORMATION, RESOURCES, AND TOOLS FOR ACHD PATIENTS WHO MIGHT EXPERIENCE BARRIERS WHEN ACCESSING RECOMMENDED SPECIALIZED CARE. THESE SEARCHABLE RESOURCES ARE PROVIDED TO HELP PATIENTS TAKE AN ACTIVE ROLE IN THEIR CARDIAC CARE. PATIENTS CAN SEARCH FOR TOPICS IN AREAS SUCH AS ACHD/CHD ORGANIZATIONS, OTHER HEALTH ADVOCACY ORGANIZATIONS, ACCESS TO CARE, AND DIVERSITY, EQUITY AND INCLUSION. 718348 65000 210517 ADVOCACY, OUTREACH AND RESEARCH ACTIVITIES:ADVOCACY- ACHA PLAYED A LEADING ROLE IN ADVOCATING FOR THE PASSAGE OF THE CONGENITAL HEART FUTURES ACT IN 2010 AS PART OF THE AFFORDABLE CARE ACT AND FOR THE CONGENITAL HEART FUTURES REAUTHORIZATION ACT (CHFRA) OF 2017. THIS LEGISLATION AUTHORIZES UP TO $10 MILLION ANNUALLY IN FEDERAL FUNDING TO STUDY AND COLLECT DATA ON CONGENITAL HEART DISEASE THROUGH THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION, AND IT DIRECTS THE NATIONAL INSTITUTES OF HEALTH TO REPORT ON ONGOING RESEARCH EFFORTS IN CHD. ACHA ANNUALLY ADVOCATES FOR FUNDING CHFRA AT THE HIGHEST AUTHORIZED LEVEL, AND IN FY2023 CONGRESS INCREASED FUNDING FOR THE FIFTH STRAIGHT YEAR, TO $8.25 MILLION (CONTINUED ON SCHEDULE O).ADVOCACY (CONTINUED) - BECAUSE CURRENT AUTHORIZATION REQUIRING CONGRESS TO APPROPRIATE FUNDING FOR CHD RESEARCH AND SURVEILLANCE EXPIRED AT THE END OF 2023, ACHA WILL MOBILIZE THIS YEAR FOR REAUTHORIZATION TO ENSURE CONTINUED SUPPORT FOR PEOPLE WITH CHD. THE CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2024 REAFFIRMS OUR COUNTRY'S COMMITMENT TO VITAL RESEARCH, SURVEILLANCE, AND AWARENESS PROGRAMS AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) BY REAUTHORIZING FUNDING AT $10 MILLION ANNUALLY THROUGH FY 2029. ACHA WILL SUPPORT CAPITOL HILL VISITS AND IN-DISTRICT VISITS IN 2024 AS WE CONTINUE TO PUSH FOR LEGISLATION AND POLICIES THAT IMPROVE HEALTH AND PSYCHOSOCIAL OUTCOMES FOR CHD PATIENTS. THIS INCLUDES ADDRESSING THE ACHD WORKFORCE SHORTAGE BY IDENTIFYING BARRIERS TO TRAINING NEW FELLOWS TO FOLLOW AN ACHD CAREER PATH. OUTREACH - REGIONAL DEVELOPMENT LEADERS - COVERED TWO REGIONS DURING 2023 TO INCREASE CHD AWARENESS AND DEVELOP CHAMPIONS ACROSS REGIONS.RESEARCH - IN 2023, ACHA FUNDED 3 RESEARCH GRANTS, BRINGING THE TOTAL NUMBER OF GRANTS ISSUED TO 17 AND CLOSE TO $500,000 SINCE 2019. 1432888 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 17 0 1 18 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 21 21 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA CO FL GA IL KY MD MA MI MN NE NH NJ NM NY OH OK OR PA TN UT VA WI MO SC WA DC CA CO FL GA IL KY MD MA MI MN NE NH NJ NM NY OH OK OR PA TN UT VA WI MO WA DC CT X X THE ORGANIZATION 2158491260 280 N PROVIDENCE ROAD SUITE 6 MEDIA PA 19063 JAMES RUPPEL MD MS CHAIR 2.00 X X 0 0 0 ALIZA MARLIN VICE CHAIR 2.00 X X 0 0 0 TOM WIX TREASURER 2.00 X X 0 0 0 SUSAN TIMMINS SECRETARY AND CLERK 2.00 X X 0 0 0 STEPHEN BACK BOARD MEMBER 2.00 X 0 0 0 BINTA BAUDY BOARD MEMBER 2.00 X 0 0 0 MINDY BEYER BOARD MEMBER 2.00 X 0 0 0 WILLIAM BROWNE BOARD MEMBER 2.00 X 0 0 0 WILLIAM CAUSEY BOARD MEMBER 2.00 X 0 0 0 JENNIFER CORTES BOARD MEMBER 2.00 X 0 0 0 MARY JANE EAZER BOARD MEMBER 2.00 X 0 0 0 JEFF ISHIDA BOARD MEMBER 2.00 X 0 0 0 NICOLE JUNG BOARD MEMBER 2.00 X 0 0 0 YULI KIM MD BOARD MEMBER 2.00 X 0 0 0 RICHARD KRASUSKI MD BOARD MEMBER 2.00 X 0 0 0 MATT MARTINHO BOARD MEMBER 2.00 X 0 0 0 JOANNE NICHOLS BOARD MEMBER 2.00 X 0 0 0 CLAUDIA NORMAN BOARD MEMBER 2.00 X 0 0 0 ANNE STAPLETON-REILLY BOARD MEMBER 2.00 X 0 0 0 KRISTI RYAN BOARD MEMBER 2.00 X 0 0 0 ARWA SAIDI MD BOARD MEMBER 2.00 X 0 0 0 MARK ROEDER PRESIDENT AND CEO 50.00 X 183612 0 13347 JENNIFER HOCKENHULL DIRECTOR OF FINANCE 40.00 X 119483 0 10976 DANIELLE HILE SR. DIRECTOR OF MEDICAL AFFAIRS 40.00 X 105237 0 9766 408332 0 34089 3 0 1 0 0 27370 2142093 15768 2169463 PROGRAM AND EVENTS 900099 210517 210517 210517 27716 27716 2407696 210517 0 27716 65000 65000 327420 72134 196197 59089 850589 730047 14762 105780 14024 12386 1638 139368 105018 15269 19081 97575 67394 16580 13601 7504 7199 305 21184 14634 3597 2953 25000 25000 132799 132799 98042 63073 1610 33359 80873 63583 1261 16029 59984 24307 3322 32355 29262 25367 397 3498 9220 7379 1682 159 7021 4850 1193 978 EVENTS 17093 6918 392 9783 LICENSES/SUBSCRIPTIONS 8398 5800 1427 1171 1990356 1432888 257689 299779 795893 1143165 110739 1839 230396 76835 18499 23085 52454 41306 14574 11148 307865 749920 25691 27241 1503657 2033233 70698 72882 216050 276209 23348 23895 310096 372986 X 897883 746727 295678 913520 1193561 1660247 1503657 2033233 417340 49346 0 X 0 1 X 1 0 X 2371038 1548844 1854421 1589871 2169463 9533637 2371038 1548844 1854421 1589871 2169463 9533637 2736400 6797237 18405 13386 12760 8191 27716 80458 373 535 908 9615003 788892 0.70690 0.79780 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: OTHER REVENUE - 2019 AMOUNT: $ 373. 2020 AMOUNT: $ 535. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 0 0 0 0 1 25000 0 0 25000 0 PART II-B, LINE 1: ACHA WORKS WITH CURA STRATEGIES ON ADVOCACY AND LOBBYING IN SUPPORT OF FEDERAL LEGISLATION BENEFITTING THE CHD COMMUNITY. 4323 4251 72 48131 37055 11076 11148 LEASE LIABILITY 23895 23895 X 2636087 49346 179045 228391 2407696 0 2407696 2169401 179045 179045 1990356 0 1990356 PART X, LINE 2: ACHA IS RECOGNIZED AS AN ORGANIZATION EXEMPT FROM FEDERAL INCOME TAX UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE OF 1986. THE ORGANIZATION QUALIFIES FOR CHARITABLE CONTRIBUTION DEDUCTIONS AND IS CLASSIFIED AS AN ORGANIZATION THAT IS NOT A PRIVATE FOUNDATION. INCOME THAT IS NOT RELATED TO EXEMPT PURPOSES, LESS APPLICABLE DEDUCTIONS, WOULD BE SUBJECT TO FEDERAL AND STATE CORPORATE INCOME TAXES. ACHA HAD NO NET UNRELATED BUSINESS INCOME FOR THE YEARS ENDED DECEMBER 31, 2023 AND 2022. MANAGEMENT EVALUATED ACHA'S TAX POSITIONS AND CONCLUDED THAT ACHA HAD TAKEN NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS. CONSEQUENTLY, NO ACCRUAL FOR INTEREST AND PENALTIES WAS DEEMED NECESSARY FOR THE YEARS ENDED DECEMBER 31, 2023 AND 2022. 1 BAYLOR COLLEGE OF MEDICINE TEXAS CHILDREN'S HOSPITAL 6651 MAIN STREET FLOOR 19 HOUSTON TX 77030 741613878 501(C)(3) 20000 0 IN SILICO EVALUATION OF A DUAL-IMPELLER SINGLE-DRIVE FONTAN CIRCULATION ASSIST DEVICE STANFORD UNIVERSITY PO BOX 884253 LOS ANGELES CA 900884253 941156365 501(C)(3) 20000 0 LEVERAGING WEARABLE TECHNOLOGIES FOR ARRHYTHMIA DETECTION IN ADULTS WITH CONGENITAL HEART DISEASE - THE ACHD APPLE WATCH STUDY ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI 150 EAST 42ND STREET 10TH FLOOR NEW YORK NY 100175629 136171197 501(C)(3) 25000 0 INVESTIGATING THE GENES INVOLVED IN PULMONARY ARTERIAL HYPERTENSION IN CONGENITAL HEART DISEASE 3 0 PART I, LINE 2: RESEARCH GRANTS: ACHA MANAGES THE APPLICATION PROCESS, WITH A TEAM OF MEDICAL PROVIDERS AND PATIENT/FAMILY MEMBERS WHO REVIEW EACH OF THE RESEARCH APPLICATIONS WITH REDACTED INFORMATION ABOUT THE MEDICAL PROVIDERS AND INSTITUTION INVOLVED IN THE RESEARCH PROJECT. EACH RESEARCH APPLICATION IS REVIEWED AND ASSIGNED A SCORE BASED ON A PREDETERMINED SET OF CRITERIA. THE RESEARCH GRANTS WITH THE HIGHEST SCORES FROM BOTH THE MEDICAL PROVIDERS AND LAY REVIEWERS (PATIENTS AND FAMILY MEMBERS) ARE AWARDED THE FUNDS ALLOTTED. INTERESTED RESEARCHERS APPLY THROUGH ACHA. RESEARCHERS AWARDED FUNDS THROUGH ACHA ARE REQUIRED TO SUBMIT QUARTERLY REPORTS TO ACHA INCLUDING A DETAILED FINANCIAL REPORT. X X X X 0 0 0 0 0 0 0 0 0 MARK ROEDER PRESIDENT AND CEO 183612 0 0 0 0 0 3805 0 9542 0 196959 0 0 0 PART I, LINE 3 THE PAY RECOMMENDATION FOR THE PRESIDENT AND CEO IS PROPOSED BY THE CHAIR. IT IS THEN REVIEWED AND APPROVED (INCLUDING MODIFICATIONS) BY THE EXECUTIVE COMMITTEE AND LASTLY BY THE BOARD ANNUALLY. X WALK SUPPLIES 60 15768 FMV 0 1 0 PART I, COLUMN (B): WALK DONATIONS- DAY OF ITEMS. FORM 990, PART VI, SECTION A, LINE 1A THE EXECUTIVE COMMITTEE IS COMPRISED OF THE CHAIR, VICE CHAIR, TREASURER, SECRETARY, AND THE IMMEDIATE PAST CHAIR. THEY HAVE AND MAY EXERCISE THE POWERS AND AUTHORITY OF THE BOARD, EXCEPT THAT NO COMMITTEE, INCLUDING BUT NOT LIMITED TO THE EXECUTIVE COMMITTEE, SHALL HAVE ANY POWER OR AUTHORITY AS TO THE FOLLOWING: 1) THE FILLING OF VACANCIES ON THE BOARD, 2) THE ADOPTION, AMENDMENT OR REPEAL OF THE BYLAWS, 3) THE AMENDMENT OR REPEAL OF ANY RESOLUTION OF THE BOARD, OR 4) ACTION ON MATTERS COMMITTED BY THE BYLAWS OR BY RESOLUTION OF THE BOARD TO ANOTHER COMMITTEE OF THE BOARD. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS PREPARED BY AN INDEPENDENT ACCOUNTING FIRM. THEN THE AUDIT COMMITTEE REVIEWS, IN DETAIL, THE DRAFT FORM 990 WITH THE INTERNAL ACCOUNTANT. AFTERWARD, A DRAFT COPY OF THE FORM 990 IS MADE AVAILABLE TO THE BOARD BEFORE FINAL FILING. FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY EVERY BOARD MEMBER RECEIVES A COPY OF THE CONFLICT OF INTEREST POLICY AND IS ASKED TO SIGN OFF ON THE POLICY AT THAT TIME. POTENTIAL CONFLICTS ARE REPORTED TO THE PRESIDENT OR THE BOARD. IF THERE IS A CONFLICT OR POTENTIAL CONFLICT, THE BOARD MEMBER WILL RECUSE THEMSELVES FROM DELIBERATION AND ANY VOTE OVER THE MATTER. DISCLOSURES OF POTENTIAL CONFLICTS, IF ANY, ARE REVIEWED AND CONTINUE TO BE MONITORED THROUGHOUT THE YEAR TO ENABLE THE ORGANIZATION TO BE ABLE TO ADDRESS ANY CONFLICTS THAT MAY ARISE IN A TIMELY MANNER. FORM 990, PART VI, SECTION B, LINE 15 ALL OFFICER AND KEY EMPLOYEE PAY IS BASED ON THE FOLLOWING CRITERIA: 1) PERFORMANCE OF THE INDIVIDUAL, 2) MARKET ANALYSIS (PAY COMPARABLES FOR POSITION AND LOCATION), 3) COST OF LIVING. THIS REVIEW PROCESS AND THE FINAL DETERMINATIONS ARE TIMELY DOCUMENTED IN THE BOARD MINUTES WITH THE APPROVAL OF THE ANNUAL BUDGET. FORM 990, PART VI, SECTION B, LINE 15A: THE PAY RECOMMENDATION FOR THE PRESIDENT AND CEO IS PROPOSED BY THE CHAIR AND IS THEN REVIEWED AND APPROVED (OR MODIFIED) BY THE CHAIR, VICE CHAIR AND GOVERNANCE CHAIR, AND THEN FINALLY THE BOARD. FORM 990, PART VI, SECTION B, LINE 15B: PAY RECOMMENDATION FOR OTHER OFFICERS AND KEY EMPLOYEES ARE PROPOSED BY THE PRESIDENT AND CEO AND THE CHAIR. THEY ARE THEN REVIEWED AND APPROVED (OR MODIFIED) BY THE BOARD DURING THE BUDGET APPROVAL PROCESS FOR PERSONNEL EXPENSES. THE PROCESS DESCRIBED FOR PRESIDENT AND CEO AND OTHER OFFICERS AND KEY EMPLOYEES WAS LAST COMPLETED IN 2023. FORM 990, PART VI, SECTION C, LINE 19 COPIES OF THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE DISTRIBUTED TO THE BOARD OF DIRECTORS, AND ARE MADE AVAILABLE TO OTHERS UPON REQUEST.