2025-08-29T13:14:34-05:00 2024-12-31 521392008 GELMAN ROSENBERG & FREEDMAN 4550 MONTGOMERY AVE SUITE 800N BETHESDA MD 208142930 990 2024-01-01 721282316 HEMOPHILIA FEDERATION OF AMERICA HEMO 2026756984 999 NORTH CAPITOL STREET NE 301 WASHINGTON DC 20001 DANIEL KELSEY PRESIDENT AND CEO 2026756984 2025-08-29 1 0 ELIZABETH W HELLER P00397829 3019519090 2024 2025-03-06 01:10:19Z DANIEL KELSEY 999 NORTH CAPITOL STREET NE 301 WASHINGTON DC 20001 4510978 0 X HTTPS://WWW.HEMOPHILIAFED.ORG X 1994 LA SEE PART III, LINE 1. 14 14 32 20 192500 0 3475569 766135 1441945 3536874 192173 207550 343 419 5110030 4510978 584974 175435 0 0 2481489 2036185 0 0 228899 2861131 1821453 5927594 4033073 -817564 477905 7762326 7886811 1998763 1575788 5763563 6311023 X HEMOPHILIA FEDERATION OF AMERICA IS A NATIONAL NONPROFIT ORGANIZATION THAT ASSISTS, EDUCATES, AND ADVOCATES FOR THE BLEEDING DISORDERS COMMUNITY. 0 0 999591 64162 3339176 SYMPOSIUM CONFERENCE - A NATIONAL ANNUAL COMMUNITY-CERTIFICATION EDUCATIONAL CONFERENCE EVENT THAT DRAWS HUNDREDS OF PATIENTS AND THEIR FAMILIES.THIS CONFERENCE IS A PLACE WHERE COMMUNITY MEMBERS COME TOGETHER TO SHARE INFORMATION, LEARN ABOUT NEW ADVANCEMENT, AND BUILD A NETWORK OF SUPPORT. 593853 36000 OUTREACH - HELPS INDIVIDUALS WITH BLEEDING DISORDERS AND THEIR CAREGIVERS LEARN HOW TO BECOME ADVOCATES ON THEIR OWN BEHALF THROUGH IN-PERSON AND ONLINE TRAINING, TOOL KITS, AND WEB RESOURCES. EDUCATION AND TOOLS ARE PROVIDED TO PARTICIPATE IN MONITORING, LEARNING TO SELF-ADVOCATE, AND EDUCATING ABOUT FEDERAL AND STATE PUBLIC POLICIES THAT IMPACT THE LIVES OF PEOPLE LIVING WITH BLEEDIDNG DISORDERS. SOCIAL AND PRINT MEDIA ARE ACTIVELY UTILIZED TO EXTEND OUTREACH EFFORTS AND BRING COMMUNITY TOGETHER. FOUR PROGRAMS ARE INCLUDED IN OUTREACH: BLOOD BROTHERHOOD, BLOOD SISTERHOOD, HFA FAMILIES, AND OUTREACH EDUCATION. 522688 16000 OTHER ACTIVITIES - PROVIDES EDUCATIONAL AND ARTISTIC SCHOLARSHIPS TO MEMBERS OF THE BLEEDING DISORDERS COMMUNITY, A RESOURCE GUIDE FOR THE CONSUMERS, AND MAINTAINS A WEBSITE WITH INFORMATION ABOUT THE ORGANIZATION'S PROGRAMS AND SERVICES. THE ORGANIZATION ALSO PUBLISHES A QUARTERLY NEWSLETTER CALLED "DATELINE FEDERATION". IN ADDITION, THE ORGANIZATION COVERS THE COST OF ATTENDANCE TO MEETINGS OF THE DEPARTMENT OF HEALTH AND HUMAN SERVICES, THE BLOOD PRODUCTS ADVISORY COMMITTEE OF THE FDA, AND THE ADVISORY COMMITTEE ON BLOOD SAFETY AND AVAILABILITY, AND PARTICIPATION IN CONFERENCES AT THE INVITATION OF THE CENTER FOR DISEASE CONTROL. 357420 2535 GEARS FOR GOOD CHARITY BIKE RIDE - ENCOURAGES PEOPLE WITH BLEEDING DISORDERS TO LIVE HEALTHY, ACTIVE LIFESTYLES. GEARS FOR GOOD IS A CHARITY BIKE RIDE OFFERED TO RAISE FUNDS FOR THE HELPING HANDS PROGRAM. RIDERS ENJOY MEETING NEW PEOPLE AND BUILDING STRONGER FRIENDSHIPS ALONG THE WAY WHILE RAISING FUNDS FOR THIS IMPORTANT CAUSE. 304007 9500 5198 HFA RESEARCH - A COMMUNITY CENTERED, COMMUNITY FOCUSED, AND COMMUNITY DRIVEN PROGRAM AIMED AT IMPROVING THE LIVES OF BLEEDING DISORDERS COMMUNITY MEMBERS. RESEARCH TOPICS ARE IDENTIFIED BY THE COMMUNITY POPULATION AND FOCUSED ON PATIENT/COMMUNITY DATA. DATA IS COLLECTED NATIONALLY ONLINE AS WELL AS LOCALLY THROUGH HFA'S 50-PLUS MEMBER ORGANIZATIONS ACROSS THE COUNTRY. 188915 47238 HELPING HANDS - DESIGNED TO ESTABLISH A RAPID, NON-INVASIVE SOURCE OF RELIEF FOR EMERGENCY SITUATIONS FOR INDIVIDUALS AND FAMILIES IN THE BLEEDING DISORDERS COMMUNITY. EACH APPLICATION IS GIVEN CAREFUL CONSIDERATION AS TO THE PERSONAL CIRCUMSTANCES, WHILE ENSURING A MINIMUM INVASION OF PRIVACY FOR COMMUNITY MEMBERS. THE PROGRAM ALSO ASSISTS INDIVIDUALS WITH THE COSTS OF MEDICALLY NECESSARY ITEMS AND DURABLE MEDICAL EQUIPMENT. 850342 59273 5198 2966474 1 1 0 0 0 0 0 0 0 0 0 0 0 1 1 0 1 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 30 0 1 32 1 1 1 0 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 0 0 0 0 0 1 1 0 0 0 1 1 1 1 1 1 1 0 AL AR CA FL GA IL KS KY MA MD MI MS PA SC TN UT VA WI HI MN NH NJ NM NY NC OR RI WV X X DANIEL KELSEY 2026756894 999 NORTH CAPITOL STREET NW WASHINGTON DC 20001 LUCAS RUNION CHAIR 3.00 X X 0 0 0 DIANE LIMA VICE-CHAIR (START 4/24) 3.00 X X 0 0 0 THOMAS WALLACE TREASURER 2.00 X X 0 0 0 ANNE-LOUISE WIRTHLIN SECRETARY 1.00 X X 0 0 0 LYNNE CAPRETTO DIRECTOR AND MOAC LIAISON 1.00 X 0 0 0 SHANTHI HEGDE DIRECTOR 1.00 X 0 0 0 DAVID HUSKIE DIRECTOR 1.00 X 0 0 0 RENITA JOHNSON DIRECTOR 1.00 X 0 0 0 ASHLEY LACY DIRECTOR 1.00 X 0 0 0 DANIEL MIKKOLA DIRECTOR 1.00 X 0 0 0 GENEVA OSTEEN DIRECTOR (START 4/24) 1.00 X 0 0 0 JOE PUGLIESE DIRECTOR (START 4/24) 1.00 X 0 0 0 PATRICIA SCHAKE DIRECTOR (START 4/24) 1.00 X 0 0 0 KAILEY TOWNSEND DIRECTOR (START 4/24) 1.00 X 0 0 0 DANIEL KELSEY PRESIDENT AND CEO 40.00 X 210526 0 23132 TRACY CLEGHORN PAST CHAIR 1.00 X 0 0 0 NASSIM GALE VP OF COMMUNICATIONS 40.00 X 108836 0 12620 PATRICIA BROWN VP OF MEETINGS, SERVICES AND DEI 40.00 X 112660 0 7883 JANET CHUPKA VP OF EDUCATION 40.00 X 106279 0 7036 DAVE ROGERS VP OF DEVELOPMENT 40.00 X 102644 0 7214 640945 0 57885 5 0 1 0 JITASA 9450 SW GEMINI DR PMB 81835 BEAVERTOWN OR 97008 ACCOUNTING 131200 1 21108 419849 325178 766135 SYMPOSIUM 611710 3339176 3339176 DATELINE ADVERTISING 900099 192500 0 192500 PROGRAM SERVICE FEES 900099 5198 5198 3536874 207550 207550 MISCELLANEOUS 900099 419 419 419 4510978 3344374 192500 207969 X 61000 61000 114435 114435 233658 186926 46732 1541366 1086456 286537 168373 33069 32530 539 81975 59400 17146 5429 146117 105111 26688 14318 17395 78 17317 174667 174667 37579 37579 471401 403846 53050 14505 16628 16628 163783 145998 16117 1668 151522 92373 59149 119605 79051 28440 12114 236751 204672 23004 9075 300999 293776 5612 1611 1737 1737 8297 5343 2201 753 TAXES AND LICENSES 943 943 SUBSCRIPTIONS 63501 45975 17226 300 EQUIPMENT 21934 18154 3027 753 PROFESSIONAL DEVELOPMEN 17845 10669 7176 16866 4053 12813 4033073 2966474 837700 228899 209891 144870 957501 1679293 210000 122324 9409 31049 176084 5721177 5251273 623299 512967 7762326 7886811 347827 210599 683355 1650936 681834 1998763 1575788 X 5763563 6311023 5763563 6311023 7762326 7886811 477905 429555 -360000 0 X 0 1 X 1 0 X 5634568 3967154 3613216 3475569 766135 17456642 5634568 3967154 3613216 3475569 766135 17456642 4937909 12518733 100639 178439 192173 207550 678801 49254 -675 343 419 49341 18184784 7128633 0.68840 0.61710 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 RIGHT-OF-USE ASSET, NET 512967 512967 OPERATING LEASE LIABILITY 681834 681834 4903709 429555 755 430310 4473399 37579 37579 4510978 3996249 755 755 3995494 37579 37579 4033073 1 TENNESSEE HEMOPHILIA AND BLEEDING DISORDERS FOUNDATION 201 E MAIN STREET SUITE 240 MURFREESBORO TN 37130 621662856 501(C)(3) 9000 0 IMPACT GRANT AND HURRICANE DISASTER RELIEF HEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA 959 E WALNUT STREET SUITE 114 PASADENA CA 91106 951916053 501(C)(3) 7000 0 IMPACT WORKSHOP AND FIRE DISASTER RELIEF BLEEDING DISORDERS FOUNDATION OF NORTH CAROLINA 260 TOWN HALL DRIVE SUITE A MORRISVILLE NC 27560 561273974 501(C)(3) 9000 0 IMPACT GRANT AND DISASTER RELIEF 3 0 ERIC DELSON MEMORIAL SCHOLARSHIP 10 86662 HELPING HANDS ASSISTANCE 112 27773 PART I, LINE 2: ALL GRANTS AND RELATED OUTCOMES ARE ENTERED IN THE ASSOCIATION MANAGEMENT SYSTEM (AMS) AND MEMBER ORGANIZATIONS (MO) ARE RESPONSIBLE FOR SUBMITTING REPORTS THAT PROVIDE DETAILS RELATED TO HOW THEY UTILIZED THE GRANT FUNDS. X X X 0 0 0 0 0 0 0 1 0 DANIEL KELSEY PRESIDENT AND CEO 194959 0 15567 0 0 0 10920 0 12212 0 233658 0 0 0 PART I, LINE 7 MERIT BASED BONUS IS REPORTED FOR THE FOLLOWING: DANIEL KELSEY: $15,567 NASSIM GALE: $2,000 PATRICIA BROWN: $4,000 JANET CHUPKA: $4,000 DAVE ROGERS: $1,000 FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 WAS PREPARED BY THE OUTSIDE ACCOUNTING FIRM AND REVIEWED BY THE PRESIDENT AND CEO PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C OFFICERS, DIRECTORS, TRUSTEES AND KEY EMPLOYEES ARE REQUIRED TO DISCLOSE POSSIBLE CONFLICTS ANNUALLY IN WRITING. THE ORGRANIZATION ALSO VERBALLY ENFORCES THE POLICY AT EVERY BOARD MEETING. IF A CONFLICT OF INTEREST OCCURS THE CONFLICTING MUST BE FULLY DISCLOSED; THE PERSON WITH THE CONFLICT OF INTEREST IS EXCLUDED FROM THE DISCUSSION AND APPROVAL OF SUCH TRANSACTION; A COMPETITIVE BID OR COMPARABLE VALUATION EXISTS; AND, THE BOARD OR A DULY CONSTITUTED COMMITTEE THEREOF HAS DETERMINED THAT THE TRANSACTION IS IN THE BEST INTEREST OF THE ORGANIZATION. DISCLOSURE INVOLVING BOARD MEMBERS SHOULD BE MADE TO THE BOARD CHAIR, (OR IF SHE OR HE IS THE ONE WITH THE CONFLICT, THEN TO THE BOARD VICE CHAIR) WHO BRINGS THESE MATTERS TO THE BOARD OR THE GOVERNANCE COMMITTEE. THE BOARD OR GOVERNANCE COMMITTEE DETERMINES 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 THE HFA. THE DECISION OF THE BOARD OR GOVERNANCE COMMITTEE ON THESE MATTERS WILL REST IN THEIR SOLE DISCRETION, AND THEIR CONCERN MUST BE THE WELFARE OF HFA AND THE ADVANCEMENT OF ITS PURPOSE. FORM 990, PART VI, SECTION B, LINE 15 THE ORGANIZATION'S EXECUTIVE COMMITTEE USE COMPARABLE DATA AND REVEIW OF THE EXECUTIVE DIRECTOR TO DETERMINE COMPENSATION. THE PROCESS IS DOCUMENTED IN THE MEETING MINUTES. THE LAST COMPENSATION REVIEW TOOK PLACE IN JANUARY 2024. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G CONTRACTORS: PROGRAM SERVICE EXPENSES 370,679. MANAGEMENT AND GENERAL EXPENSES 53,050. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 423,729. SPEAKERS HONORARIA: PROGRAM SERVICE EXPENSES 21,092. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 21,092. CHILDCARE: PROGRAM SERVICE EXPENSES 5,134. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 5,134. CONTRACTORS - GRANTS: PROGRAM SERVICE EXPENSES 0. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 14,505. TOTAL EXPENSES 14,505. TRANSLATION: PROGRAM SERVICE EXPENSES 6,941. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 6,941.