2024-06-13T16:24:47-05:00 2023-12-31 221655803 DORFMAN ABRAMS MUSIC LLC 250 PEHLE AVE SUITE 702 SADDLE BROOK NJ 07663 990 2023-01-01 223755704 THE BARTH SYNDROME FOUNDATION BART 9143036323 2005 PALMER AVENUE 1033 LARCHMONT NY 10538 EMILY MILLIGAN EXECUTIVE DIRECTOR 9143036323 2024-06-07 1 EMILY MILLIGAN 999009999 0 PATRICIA DIAZ CPA P01362006 2014039750 2024-06-06 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z EMILY MILLIGAN 2005 PALMER AVENUE 1033 LARCHMONT NY 10538 1419006 0 X WWW.BARTHSYNDROME.ORG X 2000 DE 1)TO PROMOTE AWARENESS OF BARTH SYNDROME; 2) TO EDUCATE AND SUPPORT PHYSICIANS, RESEARCH CENTERS, AND ORGANIZATIONS ADDRESSING THE CAUSES, DIAGNOSIS, TREATMENTS AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES. 14 14 7 200 0 0 1397138 1228396 0 0 -9426 106410 0 0 1387712 1334806 302773 283038 0 0 676721 726677 0 0 170399 387833 412002 1367327 1421717 20385 -86911 5372000 5491330 358670 205976 5013330 5285354 X THE BARTH SYNDROME FOUNDATION IS AN ENGAGED, GLOBAL COMMUNITY WHOSE MISSION IS SAVING LIVES THROUGH EDUCATION, ADVANCES IN TREATMENTS, AND FINDING A CURE FOR BARTH SYNDROME. 0 0 507119 283038 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2023 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE. 16829 THIS CONFERENCE WHICH IS HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGEHTER IN ONE PLACE AT A TIME, SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY, CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. DUE TO COVID-19, REGIONAL MEETINGS WERE HELD IN 2023. THE CONFERENCE CONTINUES TO BE A KEY PILLAR OF THE ORGANIZATION. 119154 THE THERAPY FUND FOR THE ADVANCEMENT OF THERAPIES FOR BARTH SYNDROME WILL BE USED EXCLUSIVELY FOR THE DEVELOPMENT OF THERAPIES DESIGNED TO PREVENT, ALLEVIATE, OR ELIMINATE THE SYMPTOMS OF BARTH SYNDROME. 399405 0 REPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME. THESE PROGRAMS ARE COMPRISED OF SERVICES RELATED TO ADVOCACY AND AWARENESS, COMMUNICATION AND AWARENESS, AND FAMILY SERVICES. 399405 0 1042507 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 1 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 7 1 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 NJ MA NY CT IL TN PA VA CA FL MD UT GA KS OH X X NATALIE COHN 8556622784 2005 PALMER AVE 1033 LARCHMONT NY 10538 ANDREW BUDDEMEYER BOARD MEMBER 2.00 X 0 0 0 BRANDI DAGUE BOARD MEMBER 2.00 X 0 0 0 BRUCE DEVELLE BOARD MEMBER 2.00 X 0 0 0 FLORENCE MANNES BOARD MEMBER 2.00 X 0 0 0 JONATHAN STOKES BOARD MEMBER 2.00 X 0 0 0 MEGAN BRANAGH BOARD MEMBER 2.00 X 0 0 0 MICHELLE FLOREZ BOARD MEMBER 2.00 X 0 0 0 NINA RUSSELL BOARD MEMBER 2.00 X 0 0 0 PETER VAN LOO BOARD MEMBER 2.00 X 0 0 0 MIRIAM GREENBERG BOARD MEMBER 2.00 X 0 0 0 KATHERINE MCCURDY CHAIR 2.00 X X 0 0 0 MARK GREENE TREASURER 2.00 X X 0 0 0 JAMES BAFFA SECRETARY 2.00 X X 0 0 0 EMILY MILLIGAN EXECUTIVE DIRECTOR 35.00 X 210452 0 19442 210452 0 19442 1 0 1 0 0 1228396 22052 1228396 131351 131351 59259 84200 -24941 -24941 -24941 1334806 0 0 106410 X 128032 128032 155006 155006 229984 137990 34498 57496 410056 332213 16807 61036 36775 28264 1965 6546 49862 39675 2928 7259 7965 7965 58148 33255 24893 161140 88881 66643 5616 90802 19560 50142 21100 44325 42542 84 1699 4979 4979 PRINTING AND PUBLICATIO 26510 18952 289 7269 DUES AND FEES 12918 7878 3840 1200 MISCELLANEOUS 2571 999 714 858 TELEPHONE 1724 695 1029 920 600 320 1421717 1042507 208811 170399 686513 460296 103000 42455 48135 4540032 4957899 25000 5372000 5491330 88438 94143 243049 84650 27183 27183 358670 205976 X 998736 1322181 4014594 3963173 5013330 5285354 5372000 5491330 -86911 385240 -26305 0 X X 0 1 X 1 0 X 935649 1162206 1214336 1397138 1228396 5937725 935649 1162206 1214336 1397138 1228396 5937725 1316708 4621017 200113 104959 349305 204144 190610 1049131 6986856 0.66140 0.62260 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 1789617 385240 95875 481115 1308502 26304 26304 1334806 1517592 95875 95875 1421717 0 1421717 PART X, LINE 2: THE ORGANIZATION IS A TAX-EXEMPT ORGANIZATION AS DEFINED BY SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE, THOUGH IT IS SUBJECT TO TAX ON INCOME UNRELATED TO ITS EXEMPT PURPOSE, UNLESS THAT INCOME IS OTHERWISE EXCLUDED BY THE CODE. THE ORGANIZATION HAS PROCESSES PRESENTLY IN PLACE TO ENSURE THE MAINTENANCE OF ITS TAX-EXEMPT STATUS; TO IDENTIFY AND REPORT UNRELATED INCOME; TO DETERMINE ITS FILING AND TAX OBLIGATIONS IN JURISDICTIONS FOR WHICH IT HAS NEXUS; AND TO IDENTIFY AND EVALUATE OTHER MATTERS THAT MAY BE CONSIDERED TAX POSITIONS. THE ORGANIZATION HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH GRANT 124854 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH GRANT 30152 0 0 0 0 0 0 155006 0 155006 EUROPE RESEARCH GRANTS 124854 WIRE TRANSFERS 0 NORTH AMERICA RESEARCH GRANTS 30152 WIRE TRANSFERS 0 0 0 0 0 0 0 1 BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 501(C)(3) 69300 0 OPTIMIZATION OF BARTH SYNDROME GENE THERAPY NYU REGISTRY ARRHYTHMIA STUDY 383 LAFAYETTE STREET NEW YORK NY 10003 501(C)(3) 42455 0 ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION AMERICAN HEART ASSOCIATION 10 E 40TH ST 11TH FLOOR NEW YORK NY 10016 501(C)(3) 16277 0 HEART DISEASE, STROKE, AND CARDIOVASCULAR HEALTH PART I, LINE 2: PRIOR TO MAKING ANY PAYMENT, WE REQUIRE CERTIFICATION OF THE USE OF FUNDS FROM THE CONTRACTING OFFICER OF THE INSTITUTION RECEIVING THE GRANT ON BEHALF OF THE GRANT RECEPIENT. EVERY SIX MONTHS THEREAFTER, AND PRIOR TO ANY SUBSEQUENT PAYMENTS, THE CERTIFYING OFFICER OF THE INSTITUTION AND THE GRANT RECIPIENT MUST SIGN A DOCUMENT CERTIFYING THAT THE RESEARCH IS CONTINUING AS PLANNED AND THAT REASONABLE PROGRESS IS BEING MADE IN ACCORDANCE WITH THE ORIGINAL PROPOSAL. FOLLOWING COMPLETION OF THE WORK, A SUMMARY OF THE RESEARCH RESULTS IS REQUIRED TO BE SENT TO US AS WELL AS ANY PUBLISHED FINDING. X X X X X 0 0 0 0 0 0 0 0 0 EMILY MILLIGAN EXECUTIVE DIRECTOR 188952 0 21500 0 0 0 8839 0 10603 0 229894 0 0 0 X 3 27524 STOCK VALUE 0 1 0 FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS SENT TO THE FULL BOARD OF DIRECTORS VIA EMAIL PRIOR TO BEING FILED WITH IRS. ALL DIRECTORS ARE AFFORDED THE OPPORTUNITY TO ASK QUESTIONS AND OFFER EDITS. THE DECISION OF WHETHER TO MAKE EDITS IS MADE BY THE STAFF PERSON IN CHARGE OF FINANCES WITHIN THE ORGANIZATION IN CONJUNCTION WITH CONSULTATION WITH OUR TAX PREPARER. FORM 990, PART VI, SECTION B, LINE 12C EACH BOARD MEMBER AND ALL EMPLOYEES WHO CAN INFLUENCE THE ACTIONS OF BARTH SYNDROME FOUNDATION (BSF) MUST FILL OUT AN ANNUAL DECLARATION STATING THAT THEY HAD NO CONFLICTS OR IDENTIFYING THE NATURE OF THEIR INTERESTED PARTY TRANSACTIONS.IT IS THE RESPONSABILITY OF THE BOARD, OFFICERS, AND MANAGEMENT EMPLOYEES TO SCRUTINIZE THEIR TRANSACTIONS AND OUTSIDE BUSINESS INTERESTS AND RELATIONSHIPS FOR POTENTIAL CONFLICTS AND TO IMMEDIATELY MAKE SUCH DISCLOSURES. THE BOARD SHALL DETERMINE WHETHER A CONFLICT EXISTS AND IN THE CASE OF AN EXISTING CONFLICT, WHETHER THE CONTEMPLATED TRANSACTION MAY BE AUTHORIZED AS JUST, FAIR, AND REASONABLE TO BSF. FORM 990, PART VI, SECTION B, LINE 15 THE EXECUTIVE COMMITTEE REVIEWS COMPENSATION FROM COMPARABLE ORGANIZATIONS AND FROM RECOGNIZED STUDIES EVERY FEW YEARS OR EARLIER IF DEEMED PRUDENT AND REVIEW THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AND THE KEY EMPLOYEES TO DETERMINE IF THE EXISTING SALARIES FALL WITHIN THESE RANGES. FORM 990, PART VI, SECTION C, LINE 19 THE FOUNDATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST AND OTHER POLICIES, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON ITS WEBSITE AND/OR BY REQUEST. FORM 990, PART IX, LINE 11G OTHER: PROGRAM SERVICE EXPENSES 88,881. MANAGEMENT AND GENERAL EXPENSES 66,643. FUNDRAISING EXPENSES 5,616. TOTAL EXPENSES 161,140. THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR THE ORGANIZATION HAS NOT CHANGED THIS PROCESS FROM THE PRIOR YEAR.