2026-08-05T17:39:38-05:00 2025-12-31 410746749 CLIFTONLARSONALLEN LLP 200 BRICKSTONE SQUARE SUITE 103 ANDOVER MA 01810 990 2025-01-01 043447959 ADULT CONGENITAL HEART ASSOCIATION ADUL 8889212242 5950 SYMPHONY WOODS ROAD 212 COLUMBIA MD 21044 MARK ROEDER PRESIDENT AND CEO 8889212242 2026-08-04 1 LUKE BURNETT P01079018 9786202000 2026-07-20 2025 2025-03-06 01:10:19Z X MARK ROEDER 5950 SYMPHONY WOODS ROAD 212 COLUMBIA MD 21044 1858947 0 X WWW.ACHAHEART.ORG X 1998 PA TO EMPOWER THE CHD COMMUNITY BY ADVANCING ACCESS TO RESOURCES AND SPECIALIZED CARE. 18 18 16 500 0 0 1764509 1669609 133203 165174 61017 24164 0 0 1958729 1858947 70000 85000 0 0 1663295 1292119 0 0 288920 595334 454457 2328629 1831576 -369900 27371 1790426 2080624 473545 628584 1316881 1452040 X TO EMPOWER THE CONGENITAL HEART DISEASE (CHD) COMMUNITY BY ADVANCING ACCESS TO RESOURCES AND SPECIALIZED CARE THAT IMPROVE PATIENT-CENTERED OUTCOMES. 0 0 856408 158904 ACCREDITATION, SUPPORT, EDUCATION, AND AWARENESS ACTIVITIES:-MEDICAL CENTER ACCREDITATION PROGRAM: THE ACCREDITATION PROGRAM STARTED IN 2014. AS OF DECEMBER 2025, THERE ARE A TOTAL OF 59 ACCREDITED SITES IN THE US. THERE ARE SEVERAL ADDITIONAL SITES CURRENTLY IN VARIOUS STAGES OF THE ACCREDITATION PROCESS.-PEER SUPPORT PROGRAM: ADULT CONGENITAL HEART ASSOCIATION (ACHA) MANAGES VOLUNTEERS TO PROVIDE ONE-ON-ONE SUPPORT TO ACHD PATIENTS, AND THOSE AFFECTED BY CHD, SEEKING SUCH HELP.(CONTINUED ON SCHEDULE O).- EDUCATIONAL MATERIALS AND WEBINARS: THROUGH ITS WEBSITE, WEBINARS, VIDEOS, AND SOCIAL MEDIA CHANNELS, ACHA PROVIDES 24-HOUR ACCESS TO RELEVANT, UP-TO-DATE INFORMATION AND RESOURCES. FROM THE WEBINARS AND VIDEOS, 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.- ACHD CLINIC DIRECTORY: ACHA EXPANDED ITS ONLINE LISTING WITH CLOSE TO 400 ACHD CLINICS (INCLUDING SATELLITE CLINICS) IN THE UNITED STATES; EACH LISTING HIGHLIGHTS THE BOARD-CERTIFIED ACHD PROVIDERS, AND 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 PROVIDES INFORMATION, RESOURCES, AND TOOLS FOR ACHD PATIENTS AND FAMILIES WHO MIGHT EXPERIENCE BARRIERS TO 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 OTHER HEALTH RESOURCES. 391769 85000 6270 ADVOCACY, OUTREACH AND RESEARCH ACTIVITIES:ADVOCACY- THE CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2024 WAS SIGNED INTO LAW IN NOVEMBER 2024 AND REAUTHORIZED FUNDING OF UP TO $10 MILLION ANNUALLY THROUGH FY 2029. ACHA EDUCATED ELECTED OFFICIALS AND OUR COMMUNITY MEMBERS ABOUT THE LEGISLATION AND OTHER 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. (CONTINUED ON SCHEDULE O).RESEARCH - IN 2025, ACHA FUNDED 4 RESEARCH GRANTS, BRINGING THE TOTAL NUMBER OF GRANTS ISSUED TO 24 AND OVER $700,000 SINCE ITS INCEPTION IN 2019. 1248177 1 1 0 1 0 0 0 0 0 1 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 0 0 0 0 0 0 0 0 0 1 22 0 16 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 18 18 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA CO CT DC FL GA IL KY MA MD MI MN MO NE NH NJ NM NY OH OK OR PA SC TN UT VA WA WI X X X MARK ROEDER 8889212242 5950 SYMPHONY WOODS ROAD SUITE 212 COLUMBIA MD 21044 JAMES RUPPEL MD MS IMMEDIATE PAST CHAIR 2.00 X X 0 0 0 STEPHEN BACK CHAIR 2.00 X X 0 0 0 WILLIAM BROWNE TREASURER 2.00 X X 0 0 0 WILLIAM CAUSEY VICE CHAIR 2.00 X X 0 0 0 NICOLE JUNG SECRETARY 2.00 X X 0 0 0 CHAD CHASE BOARD MEMBER 2.00 X 0 0 0 JONATHAN CRAMER MD BOARD MEMBER 2.00 X 0 0 0 MELISSA GARDNER-LOMAX BOARD MEMBER 2.00 X 0 0 0 CLAUDIA NORMAN BOARD MEMBER 2.00 X 0 0 0 MEREDITH RAHN-OAKES BOARD MEMBER 2.00 X 0 0 0 ANNE STAPLETON-REILLY BOARD MEMBER 2.00 X 0 0 0 ERIN WALSH-BEGUIN BOARD MEMBER 2.00 X 0 0 0 TIFFANY HACKETT-STUART BOARD MEMBER 2.00 X 0 0 0 TODD CRIPPIN BOARD MEMBER 2.00 X 0 0 0 DANIJEL BRENER BOARD MEMBER 2.00 X 0 0 0 MATT MARTINHO BOARD MEMBER 2.00 X 0 0 0 YULI KIM BOARD MEMBER 2.00 X 0 0 0 LINDSAY ALTIMARE BOARD MEMBER 2.00 X 0 0 0 MARK ROEDER PRESIDENT AND CEO 50.00 X 169304 0 13750 DANIELLE HILE SR. DIRECTOR OF MEDICAL AFFAIRS 40.00 X 115716 0 10915 285020 0 24665 2 0 1 0 0 20412 1649197 8597 1669609 ACCREDITATION REVENUE 900099 158904 158904 PROGRAMS AND EVENTS 900099 6270 6270 165174 24164 24164 1858947 165174 0 24164 85000 85000 309685 118231 136538 54916 53819 5382 48437 698280 560248 36406 101626 19266 13662 3146 2458 128821 88806 21269 18746 82248 53455 16710 12083 7892 5291 1509 1092 25088 16305 5097 3686 7200 7200 69535 49706 9473 10356 94769 59822 3617 31330 84922 61954 899 22069 51105 35809 3834 11462 34191 27378 1826 4987 5637 4258 559 820 7761 5278 1290 1193 EVENTS 59590 45821 2706 11063 LICENSES/SUBSCRIPTIONS 6767 4571 1163 1033 1831576 1248177 294479 288920 604668 177035 471160 769863 139480 65942 19999 14234 23212 32720 37447 27378 8241 10069 498848 764517 24818 246244 1790426 2080624 119582 94436 330596 293692 23367 240456 473545 628584 X 664352 960205 652529 491835 1316881 1452040 1790426 2080624 27371 107788 0 X 0 1 X 1 0 X 1854421 1589871 2169463 1764509 1669609 9047873 1854421 1589871 2169463 1764509 1669609 9047873 1614583 7433290 12760 8191 27716 61017 24164 133848 9181721 818396 0.80960 0.77220 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 7200 0 0 7200 0 150000 6091 12052 168143 0 150000 0 150000 0.00000 1.00000 0.00000 0 0 37447 27378 10069 10069 RIGHT OF USE ASSETS 235716 DEPOSITS 10528 246244 LEASE LIABILITY 240456 240456 X 2093488 107788 126753 234541 1858947 0 1858947 1958329 126753 126753 1831576 0 1831576 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, 2025 AND 2024. 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, 2025 AND 2024. 1 UNIVERSITY OF WASHINGTON PO BOX 354968 4320 BROOKLYN AVE NE STE 5 SEATTLE WA 98195 916001537 GOVERNMENT ENTITY 25000 0 RESILIENCE ASSESSMENT OF HOSPITALIZED ADULTS WITH CONGENITAL HEART DISEASE THE REGENTS OF THE UNIVERSITY OF CALIFORNIA - UCSF 1855 FOLSOM STREET STE 425 SAN FRANCISCO CA 94143 946036493 GOVERNMENT ENTITY 20000 0 TELEHEALTH-BASED CARDIAC REHABILITATION IN ADULTS WITH FONTAN CIRCULATION: A PROSPECTIVE PILOT STUDY CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVE CINCINNATI OH 45229 310833936 501(C)(3) 20000 0 DEEP LEARNING ELECTROCARDIOGRAPHY AND CARDIOPULMONARY EXERCISE TESTING TO ADVANCE PREVISION CARE OF ADULTS WITH CONGENITAL HEART DISEASE THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY 485 BROADWAY MAIL CODE 8838 REDWOOD CITY CA 94063 941156365 501(C)(3) 20000 0 MOLECULAR AND FUNCTIONAL SIGNATURES OF EXERCISE RESPONSE IN ADULT CONGENITAL HEART DISEASE: LINKING OMICS, PHENOTYPES, AND THE HEART-BRAIN AXIS 4 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 169304 0 0 0 0 0 3347 0 10403 0 183054 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. FORM 990, PART VI, SECTION A, LINE 1A THE EXECUTIVE COMMITTEE IS COMPRISED OF THE CHAIR, VICE CHAIR, TREASURER, SECRETARY, THE IMMEDIATE PAST CHAIR AND THE PRESIDENT & CEO. 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 ACHA PROVIDES INFORMATION TO THE INDEPENDENT ACCOUNTANTS WHO PREPARE THE 990. THE DRAFT 990 IS REVIEWED BY MANAGEMENT AND THEN IS PROVIDED TO THE FULL BOARD BEFORE FILING WITH THE IRS. 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 2025. 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.