2025-07-08T15:34:37-05:00 2024-12-31 221655803 DORFMAN ABRAMS MUSIC LLC 250 PEHLE AVE SUITE 702 SADDLE BROOK NJ 07663 990 2024-01-01 223755704 THE BARTH SYNDROME FOUNDATION BART 9143036323 2005 PALMER AVENUE 1033 LARCHMONT NY 10538 EMILY MILLIGAN EXECUTIVE DIRECTOR 9143036323 2025-07-02 1 1 PATRICIA DIAZ CPA P01362006 2014039750 2025-07-02 2024 2025-03-06 01:10:19Z EMILY MILLIGAN 2005 PALMER AVENUE 1033 LARCHMONT NY 10538 2800620 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. 11 11 6 200 0 0 1228396 1674742 0 0 106410 256783 0 9362 1334806 1940887 283038 432746 0 0 726677 840854 0 0 178686 412002 820291 1421717 2093891 -86911 -153004 5491330 5640640 205976 420354 5285354 5220286 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 819332 432746 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2024 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. 332352 THIS CONFERENCE WHICH IS HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER 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. 273870 BSF BUILDS AWARENESS OF BARTH SYNDROME TO IMPROVE DIAGNOSIS AND CARE, WHILE ADVANCING ADVOCACY EFFORTS THAT AMPLIFY PATIENT VOICES, MOBILIZE OUR PATIENT COMMUNITY, AND SUPPORT PROGRESS IN RESEARCH AND TREATMENT ACCESS AND DRUG DEVELOPMENT POLICY 305743 9362 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. 305743 9362 1731297 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 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 18 0 6 1 0 0 0 0 0 0 0 0 0 0 X 11 11 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 X NATALIE COHN 8556622784 2005 PALMER AVE 1033 LARCHMONT NY 10538 BRUCE DEVELLE 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 ANDREW BUDDEMEYER TERM 24 BOARD MEMBER 2.00 X 0 0 0 FLORENCE MANNES TERM 24 BOARD MEMBER 2.00 X 0 0 0 KATHERINE MCCURDY CHAIR 2.00 X X 0 0 0 JAMES BAFFA VICE CHAIR 2.00 X X 0 0 0 MARK GREENE TREASURER 2.00 X X 0 0 0 BRANDI DAGUE SECRETARY 2.00 X X 0 0 0 EMILY MILLIGAN EXECUTIVE DIRECTOR 35.00 X 227314 0 20819 LINDSAY MARJORAM DIRECTOR OF RESEARCH 35.00 X 174980 0 7216 402294 0 28035 2 0 1 0 0 1674742 7602 1674742 141114 141114 975402 859733 115669 115669 115669 OTHER REVENUE 900099 9362 9362 9362 1940887 9362 0 256783 X 235746 235746 12000 12000 185000 185000 248134 161287 24813 62034 510281 418143 20959 71179 32619 24897 1818 5904 49820 40384 1854 7582 12503 12503 62820 62820 249372 227540 16632 5200 122171 60221 39466 22484 243205 243205 7724 7724 AUDIO VISUAL 69441 69241 200 PRINTING AND PUBLICATIO 25047 20982 4065 MISCELLANEOUS 14812 14774 38 DUES AND FEES 11736 4868 6868 1460 506 954 2093891 1731297 183908 178686 460296 720374 100 48135 34906 4957899 4860260 25000 25000 5491330 5640640 94143 163444 84650 256910 27183 205976 420354 X 1322181 1121367 3963173 4098919 5285354 5220286 5491330 5640640 -153004 116659 -28723 0 X X 0 1 X 1 0 X 1162206 1214336 1397138 1228396 1674742 6676818 1162206 1214336 1397138 1228396 1674742 6676818 969330 5707488 104959 349305 204144 190610 256783 1105801 9362 9362 7791981 0.73250 0.66140 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 2073760 116659 44937 161596 1912164 28723 28723 1940887 2138828 44937 44937 2093891 0 2093891 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. 0 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION RESEARCH GRANTS 185000 0 0 0 0 0 0 185000 0 185000 EUROPE RESEARCH GRANTS 185000 WIRE TRANSFERS 0 0 0 0 0 0 0 1 DUKE UNIVERSITY 2138 CAMPUS DRIVE DURHAM NC 27708 560532129 501(C)(3) 99519 0 CARDIAC AND SKELETAL MUSCLE MYOFILAMENT ACTIVATORS FOR THE TREATMENT OF BARTH SYNDROME NEW YORK UNIVERSITY 70 WASHINGTON SQARE SOUTH NEW YORK NY 10012 135562308 501(C)(3) 75000 0 MECHANISM OF CARDIOLIPIN REMODELING BY TAFAZZIN NEW YORK UNIVERSITY 383 LAFAYETTE STREET NEW YORK NY 10003 135562308 501(C)(3) 21227 0 ARRHYTHMIA PROJECT UC BOULDER 1900 WARDENBURG DRIVE BOULDER CO 80309 846000555 501(C)(3) 40000 0 INVESTIGATING THE MOLECULAR BASIS FOR THE IMPAIRED MITOCHONDRIAL DYNAMICS IN BARTH SYNDROME SCHOLARSHIPS 2 12000 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 197314 0 30000 0 0 0 9540 0 11279 0 248133 0 0 0 LINDSAY MARJORAM DIRECTOR OF RESEARCH 174980 0 0 0 0 0 7100 0 116 0 182196 0 0 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 227,540. MANAGEMENT AND GENERAL EXPENSES 16,632. FUNDRAISING EXPENSES 5,200. TOTAL EXPENSES 249,372. FORM 990, PART XII, LINE 2C: THE FOUNDATION DID NOT CHANGE EITHER ITS OVERSIGHT PROCESS OR SELECTION PROCESS DURING THE CALENDAR YEAR.