2018-08-13T13:20:12-05:00 2017-12-31 221655803 DORFMAN ABRAMS MUSIC LLC 250 PEHLE AVE SUITE 702 SADDLE BROOK NJ 07663 990 2017-01-01 223755704 THE BARTH SYNDROME FOUNDATION BART 8556622784 2005 PALMER AVENUE NO 1033 LARCHMONT NY 10538 SUSAN MCCORMACK SECRETARY 8556622784 2018-08-07 1 EDWARD K BALTAZAR CPA P00988228 2014039750 2017 2022-09-23 18:48:47Z LINDSAY GROFF 2005 PALMER AVENUE NO 1033 LARCHMONT NY 10538 1149250 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 1026616 865365 0 0 55791 97899 0 0 1082407 963264 347254 187287 0 0 476851 485241 0 0 48772 407406 258304 1231511 930832 -149104 32432 3793936 3971455 216379 258784 3577557 3712671 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 441109 187287 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. 47838 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. 246366 COSTS RELATED TO AWARENESS. AWARENESS PROGRAMS TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF THE DISEASE. 735313 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 1 0 0 0 0 0 0 0 0 1 2 0 4 1 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 SUSAN OSNOS BOARD MEMBER 2.00 X 0 0 0 JOHN WILKINS 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 KEVIN G WOODWARD 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 RANDY BUDDEMEYER TREASURER 5.00 X X 0 0 0 MARCUS SERNEL CHAIRMAN 10.00 X X 0 0 0 SUSAN A MCCORMACK SECRETARY 2.00 X X 0 0 0 LINDSAY B GROFF EXECUTIVE DIRECTOR 40.00 X 116940 0 3089 MATTHEW TOTH DIR OF SCIENCE 40.00 X 144368 0 8794 261308 0 11883 2 0 1 0 0 865365 81708 865365 64705 64705 219180 185986 33194 33194 33194 963264 0 0 97899 187287 187287 136007 87745 6864 41398 303596 286419 17177 23814 22587 1227 21824 20413 1411 38086 38086 55500 13500 42000 49482 22501 21920 5061 16665 10312 6217 136 7649 7649 4034 4034 THERAPY DEVELOPMENT 69830 69830 DUES AND FEES 14018 5270 6848 1900 MEALS 2540 1550 963 27 AUDIO VISUAL 500 250 250 930832 735313 146747 48772 552960 204805 7898 2381 13011 11947 3220066 3752322 3793936 3971455 20904 70611 195475 179423 8750 216379 258784 X 918886 1254271 2658671 2458400 3577557 3712671 3793936 3971455 32432 121862 -19180 0 X X 0 1 X 1 0 X 824480 1102246 3138821 1026616 865365 6957528 824480 1102246 3138821 1026616 865365 6957528 18884 6938644 175 4851 26632 55791 97899 185348 7142876 0.97140 0.51940 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 1065946 121862 121862 944084 19180 19180 963264 930832 0 930832 0 930832 PART X, LINE 2: AS OF DECEMBER 31, 2017, 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 2014 ARE CLOSED. 1 UNIVERSITY OF MIAMI 1320 SOUTH DIXIE HIGHWAY SUITE 650 CORAL GABLES FL 33146 501(C)(3) 50000 CARDIOLIPIN ENHANCING BIODEGRADABLE NANOPARTICLE FOR BARTH SYNDROME UNIVERSITY OF WASHINGTON MO 700 ROSEDALE AVENUE BOX 1034 ST LOUIS MO 63112 501(C)(3) 71000 CHARACTERIZATION OF THE METABOLIC PHENOTYPE IN BARTH SYNDROME WITH CARDIAC TRANSPLANTATION UNIVERSITY OF FL PO BOX 100296 GAINESVILLE FL 32610 501(C)(3) 75000 OPTIMIZATION OF AAV-MEDIATED GENE THERAPY FOR BARTH SYNDROME PHTS FOUNDATION- TRANSPLANT STUDY PO BOX 55904 BIRMINGHAM AL 35255 501(C)(3) 5000 PEDIATRIC HEART TRANSPLANT STUDY 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 144368 0 0 0 0 0 0 0 8794 0 153162 0 0 0 X 5 81708 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.