2023-08-02T08:44:24-05:00 2022-12-31 221655803 DORFMAN ABRAMS MUSIC LLC 250 PEHLE AVE SUITE 702 SADDLE BROOK NJ 07663 990 2022-01-01 223755704 THE BARTH SYNDROME FOUNDATION BART 9143036323 2005 PALMER AVENUE 1033 LARCHMONT NY 10538 EMILY MILLIGAN EXECUTIVE DIRECTOR 9143036323 2023-06-21 1 EMILY MILLIGAN 999009999 1 EDWARD K BALTAZAR CPA P00988228 2014039750 2023-05-31 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z EMILY MILLIGAN 2005 PALMER AVENUE 1033 LARCHMONT NY 10538 1567731 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, TREATMENT AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES. 14 14 6 200 0 0 1214336 1397138 0 0 349305 -9426 0 0 1563641 1387712 204594 302773 0 0 545292 676721 0 0 161416 260846 387833 1010732 1367327 552909 20385 5986941 5372000 285252 358670 5701689 5013330 X THE BARTH SYNDROME FOUNDATION IS AN ENGAGED, GLOBAL COMMUNITY WHOSE MISSION IS SAVING LIVES THROUGH EDUCATION, ADVANCES IN TREATMENT, AND FINDING A CURE FOR BARTH SYNDROME. 0 0 466487 120373 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2021 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. 65922 THE BARTH SYNDROME INTERNATIONAL SCIENTIFIC, MEDICAL AND FAMILY CONFERENCE IS GENERALLY HELD EVERY TWO YEARS. THE CONFERENCE 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. (WHILE NOT HELD IN 2021 DUE TO COVID-19, THE CONFERENCE CONTINUES TO BE A KEY PILLAR.) 182400 182400 THE WILL MCCURDY 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. 278706 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. 278706 993515 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 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 11 0 6 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 MARYANNE CHRISANT 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 MARK GREENE BOARD MEMBER 2.00 X 0 0 0 KATHERINE MCCURDY CHAIR 2.00 X X 0 0 0 KEVIN G WOODWARD 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 198896 0 8346 ERIK LONTOK DIRECTOR OF RESEARCH 35.00 X 130646 0 5477 329542 0 13823 2 0 1 0 0 1397138 21848 1397138 97359 97359 73234 180019 -106785 -106785 -106785 1387712 0 0 -9426 302773 302773 207242 124345 31086 51811 377013 284666 60617 31730 24236 18460 2460 3316 68230 53316 6522 8392 19784 19784 55627 55627 102419 83669 18750 84052 15090 45638 23324 69319 55099 14 14206 4067 4067 PRINTING AND PUBLICATIO 25990 23708 506 1776 DUES AND FEES 9274 4813 4386 75 MISCELLANEOUS 9191 1020 455 7716 AUDIO VISUAL 4944 4624 320 3166 2148 1018 1367327 993515 212396 161416 697821 686513 30000 103000 47767 42455 5211353 4540032 5986941 5372000 88869 88438 169200 243049 27183 27183 285252 358670 X 1787258 998736 3914431 4014594 5701689 5013330 5986941 5372000 20385 -682974 -25770 0 X X 0 1 X 1 0 X 1997067 935649 1162206 1214336 1397138 6706396 1997067 935649 1162206 1214336 1397138 6706396 1911098 4795298 137262 200113 104959 349305 204144 995783 7702179 156766 0.62260 0.55410 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 756419 -682974 77451 -605523 1361942 25770 25770 1387712 1444778 77451 77451 1367327 0 1367327 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 COLORADO STATE UNIVERSITY 711 OVAL DRIVE FORT COLLINS CO 80521 501(C)(3) 82400 0 FEEDING THE STARVING HEART IN BARTH SYNDROME TEXAS HEALTH CENTER 4005 MENCHACA ROAD AUSTIN TX 78704 501(C)(3) 100000 0 ALCAT1 AS A NOVEL TARGET FOR THE TREATMENT OF CARDIOMYOPATHY IN BARTH SYNDROME BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 501(C)(3) 68750 0 OPTIMIZATION OF BARTH SYNDROME GENE THERAPY NYU REGISTRY ARRHYTHMIA STUDY 383 LAFAYETTE STREET NEW YORK NY 10003 501(C)(3) 51623 0 ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION 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 178896 0 0 0 20000 0 8346 0 0 0 207242 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 EACH YEAR, THE EXECUTIVE AND COMPENSATION COMMITTEES REVIEW COMPARABLE SALARIES BASED ON A RECOGNIZED STUDY, REVIEW INFORMATION FROM OTHER COMPARABLE ORGANIZATIONS' 990'S, AND REVIEW THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AND THE KEY EMPLOYEES TO DETERMINE IF THE EXISTING SALARIES FALL WITHIN THESE RANGES. AFTER A DELIBERATION OF THIS MATTER, A NEW PROPOSED SALARY AND BENEFIT PACKAGE IS VOTED ON. THE MINUTES OF THE BOARD OF DIRECTORS REFLECT THE NATURE OF THIS PROCESS. 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 XII, LINE 2C THE ORGANIZATION DID NOT CHANGE EITHER ITS OVERSIGHT PROCESS OR SELECTION PROCESS DURING THE TAX YEAR.