2011-04-06T10:50:07-05:00 2010-12-31 GRAY GRAY & GRAY LLP 34 SOUTHWEST PARK WESTWOOD MA 020901548 990 2010-01-01 223755704 THE BARTH SYNDROME FOUNDATION INC BART 9148341771 PO BOX 618 LARCHMONT NY 10538 STEPHEN MCCURDY 9148341771 2011-03-11 1 MIKE CECERE 7814070300 2010 2016-02-24 21:20:13Z STEPHEN MCCURDY 12 CARLEON AVENUE LARCHMONT NY 10538 795877 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. 9 8 4 50 0 0 694771 769756 0 0 59232 26121 0 0 754003 795877 144687 277968 0 0 402931 378615 0 0 33388 211330 410409 758948 1066992 -4945 -271115 2305235 2032501 100915 100042 2204320 1932459 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 525445 277968 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2010 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, B) A TAFAZZIN KNOCKDOWN MOUSE PROJECT TO PROVIDE A MOUSE MODEL OF DISEASE FOR QUALIFIED RESEARCHERS TO USE IN THEIR INVESTIGATIONS ABOUT BARTH SYNDROME, C) THE 2010 BSF SCIENTIFIC & MEDICAL ADVISORY BOARD MEETING, D) THE COST FOR A FULL TIME DIRECTOR OF SCIENCE AND TRAVEL TO THE NIH AND OTHER SCIENCE AND RESEARCH BASED MEETINGS, AND E) 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. 79659 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. 200051 EVERY TWO YEARS, BSF RUNS AN INTERNATIONAL SCIENTIFIC, MEDICAL AND FAMILY CONFERENCE WITH THE MOST RECENT ONE IN 2010. THIS UNIQUE AND ACCLAIMED FORMAT BRINGS TOGETHER THE WORLD'S TOP BARTH SYNDROME RESEARCHERS, ATTENDING CLINICIANS, AFFECTED FAMILIES AND THE FAMILIES THEMSELVES TO SHARE THEIR DATA, THEIR RESEARCH AND THEIR OBSERVATIONS. THE CONFERENCE BEGINS WITH A CLINIC AT WHICH EXTENSIVE DATA AND SAMPLES ARE GATHERED FROM THE AFFECTED BOYS AND THEIR FAMILIES FOR THE BARTH SYNDROME REGISTRY AND REPOSITORY AND CLINICIANS HAVE THE CHANCE TO EXAMINE AND TAKE HISTORIES FROM THE LARGEST GATHERING OF PEOPLE AFFECTED BY THIS RARE DISORDER IN THE WORLD. THEN RESEARCHERS PRESENT THE RESULTS OF THEIR WORK AND EXTENSIVE DISCUSSION ENSUES. FAMILIES BENEFIT FROM ACCESS TO THE WORLD'S EXPERTS ON BARTH SYNDROME IN ALL OF THE MANY DISCIPLINES AFFECTED BY THIS MULTI-SYSTEM DISORDER, AND FROM SCIENTISTS REVIEWING RESULTS OF THEIR LATEST RESEARCH. OVER THE YEARS, A STRONG SENSE OF TRUST AND MUTUALLY BENEFICIAL COOPERATION HAS GROWN AMONG THE VARIOUS GROUPS IN ATTENDANCE WHICH CONTINUES TO FACILITATE AND ENCOURAGE FURTHER DISCOVERY. 97224 COSTS RELATING TO AWARENESS AND THE BSF FAMILY SERVICES PROGRAM. 97224 902379 1 1 0 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 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 2 0 4 1 0 0 0 0 0 0 0 0 0 0 0 0 X 9 8 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 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 VALERIE BOWEN 40.00 X X 59209 0 8415 MARCUS SERNEL 5.00 X X 0 0 0 MATTHEW TOTH 40.00 X 120103 0 20342 LYNDA SEDEFIAN 40.00 X 45522 0 10611 LINDA STUNDIS 40.00 X 84696 0 6517 179312 0 28757 1 0 0 0 0 769756 769756 26121 26121 795877 0 0 26121 277968 277968 308576 223569 60190 24817 45885 35942 8363 1580 24154 16973 5056 2125 131465 95089 36376 48953 35342 10374 3237 MEALS 80561 80561 TRANSPORTATION 69535 69337 144 54 AUDIO VISUAL 35544 35544 DUES & FEES 14450 9276 4019 1155 TELEPHONE 11065 8010 3055 18836 14768 3648 420 1066992 902379 131225 33388 2154553 1940163 145927 89369 4755 2969 2305235 2032501 30918 23062 69997 76980 100915 100042 X 1436375 1063759 767945 868700 2204320 1932459 2305235 2032501 X -271115 -746 X X 0 1 1 X 0 X 1018888 674457 727957 694771 769756 3885829 1018888 674457 727957 694771 769756 3885829 964141 2921688 66816 116505 113788 59232 26121 382462 4268291 0.68450 0.72740 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 795877 1066992 -271115 -746 -746 -271861 795131 -746 -746 795877 0 795877 1066992 0 1066992 0 1066992 0 NORTH AMERICA RESEARCH FUNDED BY ANOTHER ORGANIZATION. -40000 CANADA GRANT AWARDED TO RECIPIENT IN THIS REGION. 40000 0 0 0 0 0 0 CANADA TO PERFORM RESEARCH RELATING TO BARTH SYNDROME. 40000 CHECK 1 0 0 0 0 0 0 1 UNIVERSITY OF WASHINGTON 1959 NE PACIFIC STREET SEATTLE WA 98195 916001537 N/A 39600 RESEARCH NY SCHOOL OF MEDICINE 550 FIRST AVENUE NEW YORK NY 10016 38370 RESEARCH RESEARCH CHILDREN'S HOSPITAL CINCINNATI 3333 BURNET AVENUE MLC 4900 CINCINNATI OH 45229 310833393 501(C)(3) 39998 RESEARCH UNIVERSITY OF WASHINGTON MO 700 ROSEDALE AVE BOX 1034 ST LOUIS MO 631121408 430653611 40000 RESEARCH CHILDREN'S HOSPITAL BOSTON 300 LONGWOOD AVE BOSTON MA 02115 042774441 40000 RESEARCH WAYNE STATE UNIVERSITY 5047 GULLEN MALL DETROIT MI 48202 386028429 501(C)(3) 40000 RESEARCH 2 4 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 0 0 0 0 0 0 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 STEPHEN AND KATHERINE MCCURDY ARE HUSBAND AND WIFE. 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 COMMITTEE REVIEWS 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 POLICY AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON THEIR WEBSITE AND/OR BY REQUEST. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 5: NET UNREALIZED LOSSES ON INVESTMENTS: -746. THE FOUNDATION HAS AN AUDIT COMMITTEE COMPRISED OF THE CHAIRMAN, TREASURER AND SECRETARY. THE AUDIT COMMITTEE IS RESPONSIBLE FOR THE SELECTION OF THE INDEPENDENT ACCOUNTANT AND FOR THE OVERSIGHT OF THE AUDIT OF THE FINANCIAL STATEMENTS.