2019-05-14T07:46:24-05:00 2018-12-31 221655803 DORFMAN ABRAMS MUSIC LLC 250 PEHLE AVE SUITE 702 SADDLE BROOK NJ 07663 990 2018-01-01 223755704 THE BARTH SYNDROME FOUNDATION BART 8556622784 2005 PALMER AVENUE NO 1033 LARCHMONT NY 10538 EMILY MILLIGAN EXECUTIVE DIRECTOR 8556622784 2019-05-13 1 EDWARD K BALTAZAR CPA P00988228 2014039750 47.22.41.242 2019-05-13 10:18:05 ED P D5CDD09E36E2070DC00C712D97817F632F31FF73 72801F05FCDC4F1FB6E5A7637EBB8FB54822E0A2 2018 2019-02-21 02:37:17Z EMILY MILLIGAN 2005 PALMER AVENUE NO 1033 LARCHMONT NY 10538 2773565 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 SYNDROM; AND 3) TO ASSIST IN THE SUPPORT OF FAMILIES WITH CHILDREN SUFFERING FROM BARTH SYNDROME. 12 12 4 200 0 0 865365 1997067 0 156766 97899 137262 0 0 963264 2291095 187287 253199 0 0 485241 479527 0 0 53125 258304 422584 930832 1155310 32432 1135785 3971455 4750350 258784 159079 3712671 4591271 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 371543 219199 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2017 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. 286404 156766 THIS CONFERENCE, 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. 34000 34000 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. 285544 COSTS RELATED TO AWARENESS. AWARENESS PROGRAMS TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF THE DISEASE. 285544 977491 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 0 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 12 0 4 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 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 LARCHMONT NY 10538 MATTHEW BLUMENTHAL BOARD MEMBER 2.00 X 0 0 0 FLORENCE MANNES BOARD MEMBER 2.00 X 0 0 0 MEGAN BRANAGH BOARD MEMBER 2.00 X 0 0 0 DAVID AXELROD MD BOARD MEMBER 2.00 X 0 0 0 CATHARINE LYNNE RITTER BOARD MEMBER 2.00 X 0 0 0 BRUCE J DEVELLE BOARD MEMBER 2.00 X 0 0 0 NICOLE DERUSHA-MACKEY BOARD MEMBER 2.00 X 0 0 0 BRANDI DAGUE BOARD MEMBER 2.00 X 0 0 0 MICHELLE FLOREZ BOARD MEMBER 2.00 X 0 0 0 SUSAN OSNOS BOARD MEMBER TERM 5/2018 2.00 X 0 0 0 SUSAN A MCCORMACK CHAIR 2.00 X X 0 0 0 KEVIN G WOODWARD TREASURER 2.00 X X 0 0 0 JOHN WILKINS SECRETARY 2.00 X X 0 0 0 MARCUS SERNEL CHAIRMAN TERM 5/2018 2.00 X X 0 0 0 EMILY MILLIGAN EXECUTIVE DIRECTOR 40.00 X 110769 0 0 MATTHEW TOTH DIR OF SCIENCE 40.00 X 144207 0 10595 254976 0 10595 2 0 1 0 0 25000 1972067 1026320 1997067 CONFERENCE REVENUE 900099 156766 156766 156766 98494 98494 521238 482470 38768 38768 38768 2291095 156766 0 137262 154250 154250 98949 98949 110769 66462 5538 38769 311792 293988 17804 25320 23825 1495 31646 26894 1687 3065 38488 38488 78368 57881 20487 64520 32444 22937 9139 80110 73163 6673 274 12554 12554 3562 3562 MEALS 85822 85690 132 AUDIO VISUAL 44252 44252 DUES AND FEES 12719 4950 6023 1746 THERAPY DEVELOPMENT 2189 2189 1155310 977491 124694 53125 204805 237557 2381 2565 11947 2699 3225 3225 0 0 3752322 4507529 3971455 4750350 70611 18932 179423 140147 8750 258784 159079 X 1254271 861228 2458400 3730043 3712671 4591271 3971455 4750350 1135785 -235947 -21238 0 X X 0 1 X 1 0 X 1102246 3138821 1026616 865365 1997067 8130115 1102246 3138821 1026616 865365 1997067 8130115 4223292 3906823 4851 26632 55791 97899 137262 322435 8452550 156766 0.46220 0.97140 X 3225 3225 0 0 X 2033910 -235947 -235947 2269857 21238 21238 2291095 1155310 0 1155310 0 1155310 PART X, LINE 2: AS OF DECEMBER 31, 2018, MANAGEMENT BELIEVES THAT BASED ON EVALUATION OF THE FOUNDATION'S TAX POSITIONS THAT ANY LIABILITY AS A RESULT OF UNCERTAIN TAX POSITIONS WOULD NOT BE MATERIAL. MANAGEMENT CONTINUALLY EVALUATES EXPIRING STATUTES OF LIMITATIONS, CHANGES IN TAX LAW, AND NEW AUTHORITATIVE RULINGS TO ASSIST IN EVALUATING THE FOUNDATION'S TAX POSITIONS. ACCRUED INTEREST AND PENALTIES ASSOCIATED WITH UNCERTAIN TAX POSITIONS, IF ANY, WOULD BE RECOGNIZED AS PART OF THE INCOME TAX PROVISION. INCOME TAX RETURNS ARE FILED IN THE U.S. FEDERAL JURISDICTION AND STATE JURISDICTIONS. U.S. FEDERAL AND STATE INCOME TAX RETURNS PRIOR TO FISCAL YEAR 2015 ARE CLOSED. 0 0 0 0 0 0 0 0 0 0 EUROPE PREDICTIVE DRUG REPURPOSING FOR BARTH SYNDROME 34000 EUROPE NEUTROPHIL DYSFUNCTION IN BARTH SYNDROME 24949 NORTH AMERICA THE CAUSE AND CONSEQUENCES OF PLASMALOGEN DEPLETION IN BARTH SYNDROME 40000 0 0 0 0 0 0 1 ADELPHI VALUES 290 CONGRESS STREET BOSTON MA 02210 501(C)(3) 34250 STUDY THE HEALTH OF A SUB-POPULATION (OLDER INDIVIDUALS AFFECTED WITH BTHS) WITHIN BSF'S COMMUNITY WAYNE STATE UNIVERSITY SPA 5057 WOODWARD SUITE 13001 DETROIT MI 48201 383555142 501(C)(3) 50000 CARDIOLIPIN ACTIVATES PYRUVATE DEHYDROGENARE (PDH) - A POTENTIAL NEW TARGET FOR TREATMENT OF BARTH SYNDROME NEW YORK UNIVERSITY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 501(C)(3) 70000 PRENATAL CARDIAC PHENOTYPE AS A PLATFORM FOR TESTING BARTH SYNDROME THERAPIES CARDIOLIPIN ACTIVATES PYRUVATE DEHYDROGENARE (PDH) - A POTENTIAL NEW TARGET FOR TREATMENT OF BARTH SYNDROME 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 MATTHEW TOTH DIR OF SCIENCE 144207 0 0 0 0 0 0 0 10595 0 154802 0 0 0 X 5 1026320 FMV ON DATE RECEIVED 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, REVIEWS INFORMATION FROM OTHER COMPARABLE ORGANIZATIONS' 990'S, AND REVIEWS 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, PAGE 11, PART XI, LINE 2C THE BOARD OF DIRECTORS IS RESPONSIBLE FOR OVERSIGHT OF THE AUDIT SELECTION OF THE INDEPENDENT ACCOUNTANT.