2025-11-11T15:17:13-06:00 2024-12-31 160765486 LUMSDEN & MCCORMICK LLP 369 FRANKLIN STREET BUFFALO NY 14202 990 2024-01-01 161459422 DIAMOND BLACKFAN ANEMIA FOUNDATION DIAM 7166742818 20 TRACY LYNN LANE WEST SENECA NY 14224 PETER BAUMGARDNER TREASURER 7166742818 2025-11-11 0 1 SARAH M HOPKINS P02010701 7168563300 2025-11-11 2024 2025-03-06 01:10:19Z DAWN BAUMGARDNER 20 TRACY LYNN LANE WEST SENECA NY 14224 499448 0 X WWW.DBAFOUNDATION.ORG X 1994 NY TO GENERATE FUNDS FOR THE CHARITABLE AND SCIENTIFIC PURPOSE OF PROVIDING SUPPORT FOR DIAMOND BLACKFAN ANEMIA PATIENTS, FAMILIES AND RESEARCH. 12 10 1 20 0 0 624853 442809 0 0 39292 56639 0 0 664145 499448 462295 215000 0 0 59707 74156 0 0 5355 198381 107986 720383 397142 -56238 102306 1649768 1779752 0 0 1649768 1779752 X THE MISSION OF THE DIAMOND BLACKFAN ANEMIA FOUNDATION IS TO ADVANCE RESEARCH INITIATIVES THAT PROMOTE A BETTER UNDERSTANDING, THERAPEUTIC STRATEGIES AND A CURE FOR THIS RARE BONE MARROW FAILURE SYNDROME. WE ARE DEDICATED TO PROVIDING PATIENT ADVOCACY, SUPPORT AND EDUCATION SERVICES TO INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS RESULTING IN IMPROVEMENTS IN THE DIAGNOSIS, CLINICAL TREATMENT AND MANAGEMENT OF THE DISORDER, WHILE ENHANCING THE QUALITY OF LIFE OF AFFECTED FAMILIES WORLDWIDE. 0 0 270618 215000 (RESEARCH) SUPPORT OF PEER-REVIEWED RESEARCH PROJECTS INVESTIGATING THE CAUSE AND POTENTIAL TREATMENT OPTIONS AND A CURE FOR DIAMOND BLACKFAN ANEMIA. 11079 (ASH) EXHIBITION AT THE AMERICAN SOCIETY OF HEMATOLOGY ANNUAL MEETING (ASH) ATTENDED BY APPROXIMATELY 20,000 WORLDWIDE HEMATOLOGISTS TO PROVIDE THE LATEST CLINICAL AND RESEARCH INFORMATION PERTAINING TO DIAMOND BLACKFAN ANEMIA. 84080 (ADULTS WITH DBA) A MEETING ORGANIZED TO ADDRESS THE UNIQUE PHYSICAL AND PSYCHOSOCIAL CHALLENGES CONFRONTED BY ADULT PATIENTS LIVING WITH THE RARE DISORDER. THE MEETING WAS OPEN TO PATIENTS 18 YEARS OLD AND OLDER AND A SUPPORT PERSON. IN ADDITION TO SEVERAL PRESENTATIONS BY EXPERTS IN VARIOUS PERTINENT FIELDS, THE WEEKEND LONG MEETING ALSO PROVIDED AN OPPORTUNITY FOR ADULT PATIENTS TO MEET EACH OTHER AND COME TOGETHER AS A COMMUNITY. PATIENTS AND THEIR SUPPORT PERSON WERE ALSO AFFORDED TIME TO DISCUSS THEIR INDIVIDUAL CONCERNS WITH SEVERAL WORLD-RENOWNED CLINICIANS AND DBA RESEARCHERS. 365777 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 3 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 10 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 NY X X PETER BAUMGARDNER 7166742818 20 TRACY LYNN LANE WEST SENECA NY 14224 DAWN BAUMGARDNER EXECUTIVE DIRECTOR 40.00 X X 65704 0 0 KATHI VROMAN VICE PRESIDENT 10.00 X X 0 0 0 PETER BAUMGARDNER TREASURER 10.00 X X 0 0 0 CAROL MANCUSO SECRETARY 10.00 X X 0 0 0 LAUREN BRADY DIRECTOR 10.00 X 0 0 0 CARA BREIDSTER DIRECTOR 10.00 X 0 0 0 CHARLES BROWN DIRECTOR 10.00 X 0 0 0 ANITA SHIER BRUTON DIRECTOR 10.00 X 0 0 0 REBECCA DEGROFF DIRECTOR 10.00 X 0 0 0 JAMIE DERMATIS DIRECTOR 10.00 X 0 0 0 JACY DOWNEY DIRECTOR 10.00 X 0 0 0 ANTHONY MARCHESE DIRECTOR 10.00 X 0 0 0 65704 0 0 0 0 0 0 0 37322 405487 11280 442809 56639 56639 0 37322 0 0 499448 0 0 56639 120000 120000 95000 95000 65704 49278 13141 3285 8452 6339 1690 423 4500 4500 95160 95160 218 218 8108 6461 1647 397142 365777 26010 5355 65969 61355 493372 541187 534 612 2298 2189 326 109 1089567 1176489 1649768 1779752 0 0 X 1649768 1779752 1649768 1779752 1649768 1779752 102306 27678 0 X X 1 X 0 1 0 X 428753 400779 382199 624853 442809 2279393 428753 400779 382199 624853 442809 2279393 309930 1969463 3726 3044 1639 39292 56639 104340 2383733 0.82620 0.82240 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2298 2189 109 109 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION. GRANTS FOR STUDY OF DIAMOND BLACKFAN ANEMIA. 95000 0 0 0 0 0 0 95000 0 95000 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH PROPOSAL 50000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH PROPOSAL 45000 WIRE TRANSFER 0 0 0 0 0 0 0 PART I, LINE 2: ALL GRANT REQUESTS (INCLUDING FOREIGN) ARE SUBMITTED TO THE DIAMOND BLACKFAN RESEARCH DIRECTOR (RD). THE RD THEN SEEKS OUT THREE INDEPENDENT SOURCES WHO ARE SPECIALISTS IN THE AREA RELATING TO THE RESEARCH PROJECT. THE RD SUMMARIZES THE INDEPENDENT REVIEWS AND SUBMITS THE SUMMARY REPORT ALONG WITH THE INDEPENDENT SPECIALISTS' REPORTS TO THE BOARD. THE BOARD REVIEWS AND IF A MAJORITY APPROVE, THE GRANT IS ISSUED. THE PRINCIPAL INVESTIGATOR, THE SCIENTIST WHO IS SPEARHEADING THE RESEARCH PROJECT AND WHO SUBMITTED THE REQUEST, PREPARES A MEDICAL AND FINANCIAL REPORT FOR THE RD/BOARD AT THE END OF THE PROJECT OR ON A MORE REGULAR BASIS IF DEEMED NECESSARY. CHARLIE'S HOPE GOLF TOURNAMENT 30000 30000 6 7322 7322 37322 37322 1 STANFORD UNIVERSITY - DR KATHLEEN SAKAMOTO 485 BROADWAY MAILE CODE 8838 REDWOOD CITY CA 94063 941156365 501C3 70000 0 RESEARCH PROPOSAL STANFORD UNIVERSITY - DR MARIA BARNA 485 BROADWAY MAILE CODE 8838 REDWOOD CITY CA 94063 941156365 501C3 50000 0 RESEARCH PROPOSAL 2 PART I, LINE 2: ALL GRANT REQUESTS (INCLUDING FOREIGN) ARE SUBMITTED TO THE DIAMOND BLACKFAN RESEARCH DIRECTOR (RD). THE RD THEN SEEKS OUT THREE INDEPENDENT SOURCES WHO ARE SPECIALISTS IN THE AREA RELATING TO THE RESEARCH PROJECT. THE RD SUMMARIZES THE INDEPENDENT REVIEWS AND SUBMITS THE SUMMARY REPORT ALONG WITH THE INDEPENDENT SPECIALISTS' REPORTS TO THE BOARD. THE BOARD REVIEWS AND IF A MAJORITY APPROVE, THE GRANT IS ISSUED. THE PRINCIPAL INVESTIGATOR, THE SCIENTIST WHO IS SPEARHEADING THE RESEARCH PROJECT AND WHO SUBMITTED THE REQUEST, PREPARES A MEDICAL AND FINANCIAL REPORT FOR THE RD/BOARD AT THE END OF THE PROJECT OR ON A MORE REGULAR BASIS IF DEEMED NECESSARY. X 2 11280 0 0 0 FORM 990, PART VI, SECTION A, LINE 2 EXECUTIVE DIRECTOR AND TREASURER ARE MARRIED TO EACH OTHER. FORM 990, PART VI, SECTION B, LINE 11B FORM 990 AVAILABLE FOR REVIEW UPON REQUEST OF BOARD MEMBERS BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C CURRENT RESPONSIBLE PERSONS ANNUALLY COMPLETE A DISCLOSURE FORM IDENTIFYING ANY RELATIONSHIPS, POSITIONS OR CIRCUMSTANCES IN WHICH THEY ARE INVOLVED THAT COULD POTENTIALLY BE A CONFLICT. THE POLICY IS REVIEWED ANNUALLY AND AMENDED IF NECESSARY. ANY NEW RESPONSIBLE PERSON IS REQUIRED TO REVIEW A COPY OF THE POLICY AND SIGN OFF ON IT. FORM 990, PART VI, SECTION B, LINE 15A SALARIES ARE DETERMINED AT THE BOARD LEVEL BASED ON NON-PROFIT SALARY SURVEYS, PREVIOUS SALARY OF THE EMPLOYEE, AND THE CURRENT BUDGET. FORM 990, PART VI, SECTION C, LINE 19 DBA WEBSITE AND UPON REQUEST FORM 990 PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.