2017-05-03T10:32:45-05:00 2016-12-31 042088368 GRAY GRAY & GRAY LLP 150 ROYALL STREET SUITE 102 CANTON MA 02021 990 2016-01-01 223755704 THE BARTH SYNDROME FOUNDATION INC BART 8556622784 2005 PALMER AVE NO 1033 LARCHMONT NY 10538 LINDSAY B GROFF EXECUTIVE DIRECTOR 8556622784 2017-05-02 1 MICHAEL L CECERE P00236848 7814070300 2017-05-02 50.234.152.46 2017-05-02 15:33:55 ED P 4CB60F71B332EFE142C1B35711A0205FB6B82728 4CB60F71B332EFE142C1B35711A0205FB6B82728 2016 2021-01-29 14:40:06Z LINDSAY B GROFF 2005 PALMER AVE NO 1033 LARCHMONT NY 10538 1168033 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 FAMILIES WITH CHILDREN SUFFERING FROM BARTH SYNDROME. 12 12 4 200 0 0 3138821 1026616 0 0 26632 55791 0 0 3165453 1082407 551043 347254 0 0 486057 476851 0 0 80093 195210 407406 1232310 1231511 1933143 -149104 3913906 3793936 240827 216379 3673079 3577557 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 494891 271154 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2016 WAS COMPRISED OF A) THE BSF RESEARCH GRANT 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. 164146 THIS CONFERENCE, HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT ONE 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 PROVIDING INFORMATION AND TISSUE SAMPLES. 133394 76100 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. 248031 COSTS RELATING TO AWARENESS. 248031 1040462 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 5 0 1 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 MA NY CT NJ IL TN PA VA CA FL MD UT GA KS OH X X X NATALIE COHN 5164597165 2005 PALMER AVE 1033 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 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 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 LINDSAY B GROFF EXECUTIVE DIRECTOR 40.00 X 120666 0 233 MATTHEW TOTH DIR OF SCIENCE 40.00 X 152870 0 11192 VALERIE BOWEN PRESIDENT, FORMER 40.00 X 79719 0 4093 353255 0 15518 2 1 1 0 0 1026616 66323 1026616 56492 56492 84925 85626 -701 -701 -701 1082407 -701 0 56492 347254 347254 200385 152119 6033 42233 219551 202881 16670 26495 22307 1570 2618 30420 25366 1694 3360 34533 34533 40102 19981 121 20000 65601 21431 38963 5207 4106 4106 TRANSPORTATION 82098 78852 3246 THERAPY DEVELOPMENT 67167 67167 MEALS 62502 62064 20 418 AUDIO VISUAL 19894 19894 31403 21146 7246 3011 1231511 1040462 110956 80093 1592360 1188645 2352 7898 16495 13011 1302792 2584382 999907 3913906 3793936 16726 20904 224101 195475 240827 216379 X 700727 918886 2972352 2658671 3673079 3577557 3913906 3793936 -149104 53582 0 X X 0 1 X 1 0 X 871480 824480 1102246 3138821 1026616 6963643 871480 824480 1102246 3138821 1026616 6963643 3297122 3666521 7975 175 4851 26632 55791 95424 7059067 0.51940 0.47610 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 1135989 53582 53582 1082407 0 1082407 1231511 0 1231511 0 1231511 PART X, LINE 2: THE FOUNDATION IS REQUIRED TO RECOGNIZE THE FINANCIAL STATEMENT IMPACT OF A TAX POSITION UNLESS IT IS MORE LIKELY THAN NOT THAT THE POSITION WILL BE SUSTAINED UPON EXAMINATION. THE FOUNDATION RECOGNIZES INTEREST AND PENALTIES RELATED TO ANY UNRECOGNIZED TAX BENEFITS IN INCOME TAX EXPENSE. THE FOUNDATION HAS NO AMOUNTS ACCRUED FOR INTEREST AND PENALTIES AS OF DECEMBER 31, 2016. BASED ON THE EVALUATION OF THE FOUNDATION'S TAX POSITIONS, MANAGEMENT BELIEVES ALL POSITIONS TAKEN WOULD BE UPHELD UNDER AN EXAMINATION. THEREFORE, NO PROVISION FOR THE EFFECTS OF UNCERTAIN TAX POSITIONS HAS BEEN RECORDED FOR THE YEAR ENDED DECEMBER 31, 2016. 1 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS RESEARCH 21154 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS RESEARCH 76100 0 0 0 0 0 0 97254 0 97254 NORTH AMERICA RESEARCH 21154 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 26100 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH 50000 CHECK 0 0 0 0 0 0 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 RECIPIENT. 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 FINDINGS. 1 UNIVERISTY OF TEXAS HEALTH SCIENCES CENTER 7703 FLOYD CURL DR SAN ANTONIO TX 78229 741586031 501(C)(3) 100000 RESEARCH EMORY UNIVERSITY 1599 CLIFTON ROAD ATLANTA GA 303224250 580566256 501(C)(3) 50000 RESEARCH WAYNE STATE UNIVERSITY 42 WEST WARRENT AVENUE DETROIT MI 48202 386028429 50000 RESEARCH RESEARCH RESEARCH WASHINGTON UNIVERSITY SCHOOL OF MEDICINE 660 S EUCLID AVE ST LOUIS MO 63110 143065361 501(C)(3) 50000 RESEARCH 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 RECIPIENT. 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 FINDINGS. X X X X X 0 0 0 0 0 0 0 0 0 MATTHEW TOTH DIR OF SCIENCE 152870 0 0 0 0 0 0 0 11192 0 164062 0 0 0 VALERIE BOWEN PRESIDENT, FORMER 79719 0 0 0 0 0 0 0 4093 0 83812 0 0 0 X 7 66323 COST ON DAY OF DONATION 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 RESPONSIBILITY 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, PART XII, LINE 2C: THERE HAS BEEN NO CHANGE FROM THE PRIOR YEAR IN THE OVERSIGHT OF THE AUDIT AND SELECTION OF THE INDEPENDENT ACCOUNTANT. THE FOUNDATION HAS AN AUDIT CCOMMITTEE COMPRISED OF THE CHAIRMAN, TREASURER AND SECRETARY. THE AUDIT COMMITTEE IS RESPONSBILE FOR THE SELECTION OF THE INDEPENDENT ACCOUNTANT AND FOR THE OVERSIGHT OF THE AUDIT OF THE FINANCIAL STATEMENTS.