2014-05-08T13:20:03-05:00 2013-12-31 042088368 GRAY GRAY & GRAY LLP 34 SOUTHWEST PARK WESTWOOD MA 020901548 990 2013-01-01 223755704 THE BARTH SYNDROME FOUNDATION INC BART 9148341771 PO BOX 618 LARCHMONT NY 10538 LINDSAY B GROFF EXECUTIVE DIRECTOR 9148341771 2014-04-14 1 MICHAEL L CECERE P00236848 7814070300 2014-04-14 2013 2015-11-30 17:44:51Z LINDSAY B GROFF PO BOX 618 LARCHMONT NY 10538 1069130 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. 10 10 4 20 0 0 871480 824480 0 0 7975 175 0 0 879455 824655 315823 297772 0 0 412284 436820 0 0 50241 228202 62360 956309 796952 -76854 27703 1909785 1908550 90438 62293 1819347 1846257 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 437806 297772 THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2013 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. 92342 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. 103482 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. 30592 COSTS RELATING TO AWARENESS. 30592 664222 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 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 1 0 1 4 1 0 0 0 0 0 0 0 0 X 10 10 1 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 X X X ELLEN BRUNO 5086689392 92 MILL BROOK AVENUE WALPPOLE MA 020812163 STEPHEN KUGELMANN BOARD MEMBER 2.00 X 0 0 0 KATHERINE MCCURDY BOARD MEMBER 10.00 X 0 0 0 SUSAN OSNOS BOARD MEMBER 2.00 X 0 0 0 SUSAN WILKINS 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 CATHY RITTER BOARD MEMBER 2.00 X 0 0 0 LINDSAY B GROFF EXECUTIVE DIRECTOR 40.00 X 110308 0 0 MATTHEW TOTH DIR OF SCIENCE 40.00 X 143781 0 7209 VALERIE BOWEN PRESIDENT, FORMER 40.00 X 72526 0 7266 326615 0 14475 2 1 1 0 0 824480 246765 824480 5481 5481 239169 244475 -5306 -5306 -5306 824655 -5306 0 5481 288284 288284 9488 9488 182846 139542 4692 38612 205246 190270 14976 21126 19463 1663 27602 23056 1462 3084 28894 28894 -46368 -46368 22552 8626 11737 2189 3827 3827 TRANSPORTATION 16385 6334 9753 298 TRAINING AND EDUCATION 10913 6155 4758 DUES & FEES 10771 4984 4787 1000 TELEPHONE 8252 7277 675 300 7134 7111 23 796952 664222 82489 50241 1869007 1874604 37186 21828 3592 12118 1909785 1908550 29938 23478 60500 38815 90438 62293 X 849083 911867 970264 934390 1819347 1846257 1909785 1908550 27703 -793 0 X X 0 1 X 1 0 X 694771 769756 706090 871480 824480 3866577 694771 769756 706090 871480 824480 3866577 1545026 2321551 59232 26121 11094 7975 175 104597 3971174 0.58460 0.58690 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 823862 -793 -793 824655 0 824655 796952 0 796952 0 796952 0 NORTH AMERICA 0 0 RESEARCH GRANT AWARDED 18975 0 0 0 0 0 0 18975 0 18975 NORTH AMERICA RELATIONSHIP BETWEEN MEMBRANE PHYSICAL PROPERTIES AND THE ACTION OF TAFAZZIN. 9488 CHECK 1 0 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 NY UNIVERSITY MEDICAL CENTER 550 FIRST AVENUE NEW YORK NY 10016 N/A 40000 RESEARCH UNIVERISTY OF IOWA 2222 OLD HIGHWAY 218 S IOWA CITY IA 52242 N/A 40000 RESEARCH CHILDREN'S HOSPITAL AND RESEARH CENTER AT OAKLAND 747 52ND STREET OAKLAND CA 94609 940382330 501(C)(3) 40000 RESEARCH BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 40000 RESEARCH UNIVERISTY OF WASHINGTON 4311 11TH AVE NE STE 100 SEATTLE WA 98105 916001537 40000 RESEARCH UNIVERSITY OF WASHINGTON 700 ROSEDALE AVE BOX 1034 ST LOUIS MO 631121408 430653611 N/A RESEARCH KENNEDY KRIEGER INSTITUTE 707 NORTH BROADWAY BALTIMORE MD 21205 521524965 501(C)(3) RESEARCH UNIVERSITY OF CALIFORNIA AT SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 RESEARCH PENNSYLVANIA STATE UNIVERSITY SCHOOL OF MEDICINE 500 UNIVERSITY DRIVE HERSHEY PA 17033 251854772 501(C)(3) 40000 RESEARCH COLORADO STATE UNIVERSITY 1062 CAMPUS DELIVERY FORT COLLINS CO 805231062 N/A 40000 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 143781 0 0 0 0 0 0 0 7209 0 150990 0 0 0 VALERIE BOWEN PRESIDENT, FORMER 72526 0 0 0 0 0 0 0 7266 0 79792 0 0 0 X 9 246765 COST ON DAY OF DONATION 1 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 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. 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.