2012-05-10T12:55:08-05:00 2011-12-31 042088368 GRAY GRAY & GRAY LLP 34 SOUTHWEST PARK WESTWOOD MA 020901548 990 2011-01-01 223755704 THE BARTH SYNDROME FOUNDATION INC BART 9148341771 PO BOX 618 LARCHMONT NY 10538 STEPHEN MCCURDY 9148341771 2012-03-16 1 MICHAEL L CECERE P00236848 7814070300 2011 2016-02-24 21:20:13Z X STEPHEN MCCURDY 12 CARLEON AVENUE LARCHMONT NY 10538 717184 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. 11 9 4 50 0 0 769756 706090 0 0 26121 11094 0 0 795877 717184 277968 223765 0 0 378615 332846 0 0 10827 410409 196055 1066992 752666 -271115 -35482 2032501 1994513 100042 99302 1932459 1895211 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 477294 262115 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2011 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. 51748 THE BSF COMMUNICATIONS PROGRAM IS COMPRISED OF BI-ANNUAL NEWSLETTERS IN THE SPRING AND THE FALL OF EACH YEAR, AND ANNUAL REPORT, AN UPDATED HEALTHCARE BROCHURE, AND VARIOUS POSTCARD MAILINGS PROMOTING THE BSF INTERNATIONAL CONFERENCE AND OTHER KEY EVENTS. 69787 FAMILY SERVICES PROGRAM INCLUDES A ROBUST WEBSITE WHICH ALLOWS USERS TO ACCESS THE LATEST RESOURCES; FAMILY OUTREACH SERVICES TO ENCOURAGE AFFECTED FAMILIES TO GET TOGETHER; A LISTSERV WHERE FAMILIES SUPPORT ONE ANOTHER, AS WELL AS PERSONAL PHONE CALLS TO WELCOME NEW FAMILIES AND TO OFFER NON-MEDICAL SUPPORT WHEN NEEDED. 36044 COSTS RELATING TO AWARENESS AND THE BSF FAMILY SERVICES PROGRAM. 36044 634873 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 1 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 0 1 2 0 1 4 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 9 1 0 0 0 0 0 0 1 1 1 0 1 1 1 1 1 1 1 1 0 MA NY CT NJ IL TN PA VA CA FL MD UT GA KS X X X ELLEN BRUNO 5086689392 92 MILL BROOK AVENUE WALPPOLE MA 020812163 MICHAELA DAMIN 2.00 X 0 0 0 STEPHEN KUGELMANN 2.00 X 0 0 0 KATHERINE MCCURDY 10.00 X 0 0 0 SUSAN OSNOS 2.00 X 0 0 0 SUSAN WILKINS 2.00 X 0 0 0 STEPHEN B MCCURDY 15.00 X X 0 0 0 RANDY BUDDEMEYER 5.00 X X 0 0 0 MARCUS SERNEL 5.00 X X 0 0 0 SUSAN A MCCORMACK 2.00 X 0 0 0 JOHN WILKINS 2.00 X 0 0 0 DAVID AXELROD MD 2.00 X 0 0 0 LINDSAY B GROFF 40.00 X 17308 0 0 MATTHEW TOTH 40.00 X 133874 0 17943 VALERIE BOWEN 40.00 X 60880 0 9610 212062 0 27553 1 1 1 0 0 706090 706090 11094 11094 717184 0 0 11094 223765 223765 274398 231068 36503 6827 38259 32906 5353 20189 16637 2957 595 28330 28330 100912 88901 12011 16954 6511 8646 1797 3463 3463 TRANSPORTATION 19181 16271 2802 108 DUES & FEES 11410 3860 6050 1500 TELEPHONE 8727 7876 851 PRINTING AND PUBLICATIO 5218 5218 1860 1860 752666 634873 106966 10827 1940163 1829014 89369 163351 2969 2148 2032501 1994513 23062 19302 76980 80000 100042 99302 X 1063759 937779 868700 957432 1932459 1895211 2032501 1994513 X -35482 -1766 X X 0 1 1 X 0 X 674457 727957 694771 769756 706090 3573031 674457 727957 694771 769756 706090 3573031 1185352 2387679 116505 113788 59232 26121 11094 326740 3899771 0.61230 0.68450 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 717184 752666 -35482 -1766 -1766 -37248 715418 -1766 -1766 717184 0 717184 752666 0 752666 0 752666 1 THE NETHERLANDS 0 0 GRANT TO RECIPIENTS LOCATED IN THAT REGION 40000 0 0 0 0 0 0 40000 0 40000 THE NETHERLANDS TO PERFORM RESEARCH RELATING TO BARTH SYNDROME. 40000 CHECK 0 0 0 0 0 0 1 NY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 N/A 40000 RESEARCH UNIVERSITY OF FLORIDA COLLEGE OF PEDIATRICS PO BOX 100296 GAINESVILLE FL 326100296 596002052 N/A 39820 RESEARCHRESEARCH WAYNE STATE UNIVERSITY 5047 GULLEN MALL DETROIT MI 48202 386028429 501(C)(3) 40000 RESEARCH COLORADO STATE UNIVERSITY 1062 CAMPUS DELIVERY FORT COLLINS CO 805231062 N/A 40000 RESEARCH SANFORD-BURNHAM MEDICAL RESEARCH INSTITUTE 10901 NORTH TORREY PINES RD LA JOLLA CA 92037 510197108 501(C)3) 40000 RESEARCH 2 3 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, 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 133874 0 0 0 0 0 0 0 17943 0 151817 0 0 0 VALERIE BOWEN 60880 0 0 0 0 0 0 0 9610 0 70490 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 STEPHEN AND KATHERINE MCCURDY ARE HUSBAND AND WIFE. IN ADDITION JOHN AND SUSAN WILKINS ARE MOTHER AND SON. FORM 990, PART VI, SECTION B, LINE 11 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. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 5: NET UNREALIZED LOSSES ON INVESTMENTS: -1,766. 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.