2026-08-25T14:10:50-07:00 2025-12-31 262176601 EASY OFFICE DBA JITASA 1120 S RACKHAM WAY SUITE 300 MERIDIAN ID 83642 990 2025-01-01 820714729 KIF1AORG INC KIF1 9296305232 1178 BROADWAY 3RD FLOOR 3535 NEW YORK NY 10001 DOMINIQUE LESSARD EXECUTIVE DIRECTOR 9296305232 2026-08-25 1 JEREMY CORK P01544850 2082874777 2026-08-25 2025 DOMINIQUE LESSARD 1178 BROADWAY 3RD FLOOR 3535 NEW YORK NY 10001 1862921 0 X www.kif1a.org X 2017 NY KIF1A.ORG IS A GLOBAL COMMUNITY DEDICATED TO IMPROVING THE LIVES OF THOSE AFFECTED BY KIF1A-ASSOCIATED NEUROLOGICAL DISORDERS AND ACCELERATING RESEARCH TO FIND A CURE. 7 6 2 20 0 0 292389 1815649 2196 7990 0 7135 0 32147 294585 1862921 3180 6698 0 0 94873 208455 0 0 17492 51084 238406 149137 453559 145448 1409362 218316 1629866 0 0 218316 1629866 KIF1A.ORG IS A GLOBAL COMMUNITY DEDICATED TO IMPROVING THE LIVES OF THOSE AFFECTED BY KIF1A-ASSOCIATED NEUROLOGICAL DISORDERS AND ACCELERATING RESEARCH TO FIND A CURE. 0 0 141985 0 0 MEDICAL RESEARCH AND DEVELOPMENT - KIF1A.ORG'S MEDICAL RESEARCH AND DEVELOPMENT PROGRAM ACCELERATES DISCOVERY AND THERAPEUTIC DEVELOPMENT FOR KIF1A ASSOCIATED NEUROLOGICAL DISORDER (KAND) BY DRIVING SCIENTIFIC COLLABORATION AND PATIENT-CENTERED RESEARCH. LED BY OUR CHIEF SCIENCE OFFICER, THIS PROGRAM FACILITATES COORDINATION AMONG RESEARCHERS, CLINICIANS, AND INSTITUTIONS AROUND THE WORLD TO ALIGN EFFORTS, SHARE DATA AND RESOURCES, AND ADVANCE UNDERSTANDING OF KIF1A-RELATED SYMPTOMS. THROUGH STRATEGIC PARTNERSHIPS, RESEARCH GRANTS, AND CONVENING GLOBAL EXPERTS, THE PROGRAM HELPS IDENTIFY AND PRIORITIZE HIGH-IMPACT RESEARCH PROJECTS. IMPORTANTLY, KIF1A.ORG ENSURES THAT THE PATIENT AND CAREGIVER PERSPECTIVE REMAINS CENTRAL IN ALL SCIENTIFIC DISCUSSIONS, FROM BASIC RESEARCH TO CLINICAL TRIAL DESIGN. BY BRIDGING THE GAP BETWEEN FAMILIES AND THE SCIENTIFIC COMMUNITY, THE MEDICAL RESEARCH AND DEVELOPMENT PROGRAM FOSTERS A COLLABORATIVE ECOSYSTEM DEDICATED TO DELIVERING MEANINGFUL OUTCOMES FOR THOSE AFFECTED BY KAND. 124606 808 7990 FAMILY & SCIENTIFIC ENGAGEMENT CONFERENCE - KIF1A.ORG HOSTS A BIENNIAL FAMILY AND SCIENTIFIC ENGAGEMENT CONFERENCE TO UNITE THE GLOBAL KAND COMMUNITY-INCLUDING PATIENTS, FAMILIES, RESEARCHERS, CLINICIANS, AND INDUSTRY PARTNERS-FOR A COLLABORATIVE EXCHANGE OF KNOWLEDGE, RESEARCH UPDATES, AND LIVED EXPERIENCES. THIS FLAGSHIP EVENT FOSTERS MEANINGFUL CONNECTIONS, DRIVES CROSS-DISCIPLINARY COLLABORATION, AND AMPLIFIES THE PATIENT VOICE IN THE SEARCH FOR TREATMENTS AND A CURE. OUR MOST RECENT 2023 EVENT AND LAID CRITICAL GROUNDWORK FOR THE 2025 GATHERING. WE HELD OUR 2025 CONFERENCE IN JULY WITH 345 TOTAL ATTENDANCE (222 IN PERSON AND 123 VIRTUAL) REFLECTING 136% INCREASE SINCE OUR LAST CONVENING. ONGOING ACTIVITIES INCLUDED FOLLOW-UP SESSIONS, PLANNING MEETINGS, COMMUNITY FEEDBACK INITIATIVES, AND SPEAKER COORDINATION. THESE EFFORTS ENSURE THE CONFERENCE REMAINS A POWERFUL CATALYST FOR RESEARCH PROGRESS AND A VITAL SOURCE OF SUPPORT AND EMPOWERMENT FOR FAMILIES AFFECTED BY KAND. 56131 5500 0 COMMUNITY & FAMILY SUPPORT - KIF1A.ORG'S COMMUNITY AND FAMILY SUPPORT PROGRAM EMPOWERS INDIVIDUALS AFFECTED BY KIF1A ASSOCIATED NEUROLOGICAL DISORDER (KAND) THROUGH DIRECT SUPPORT, RESOURCE DEVELOPMENT, AND FAMILY-CENTERED INITIATIVES. THIS PROGRAM PROVIDES A VITAL SUPPORT NETWORK FOR PATIENTS, CAREGIVERS, AND ADVOCATES NAVIGATING THE CHALLENGES OF A RARE NEURODEGENERATIVE DISEASE. THROUGH VIRTUAL MEETUPS, EDUCATIONAL WEBINARS, PERSONALIZED FAMILY OUTREACH, AND AN ONLINE COMMUNITY PLATFORM, KIF1A.ORG FOSTERS MEANINGFUL CONNECTIONS AMONG FAMILIES AROUND THE WORLD. THE PROGRAM ALSO PROVIDES GUIDANCE ON CLINICAL CARE, ACCESS TO RESEARCH OPPORTUNITIES, AND EMOTIONAL SUPPORT RESOURCES. BY AMPLIFYING THE VOICES OF PATIENTS AND CAREGIVERS, THE COMMUNITY AND FAMILY SUPPORT PROGRAM HELPS BUILD RESILIENCE, REDUCE ISOLATION, AND ENSURE THAT EVERY KAND FAMILY IS EQUIPPED WITH THE TOOLS AND INFORMATION NEEDED TO FACE THE COMPLEX REALITIES OF THIS ULTRA-RARE DISORDER. 36382 391 0 REIMBURSEMENT OTHER PROGRAMS - GENERAL AND CONFERENCE ATTENDANCE. 36382 391 0 359104 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 3 0 1 2 1 0 0 0 0 0 0 0 0 0 0 0 0 X 7 6 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 0 0 0 0 NY X X EASY OFFICE DBA JITASA 2082874777 1120 S RACKHAM WAY SUITE 300 MERIDIAN ID 83642 DOMINIQUE LESSARD EXECUTIVE DIRECTOR 40 X 82319 0 0 ANGIE FULLER CHAIRPERSON, TREASURER 40 X X 0 0 0 MICHELLE TAO VICE CHAIRPERSON, SECRETARY 5 X X 0 0 0 PATRICK SARMIERE BOARD MEMBER 1 X 0 0 0 TAMARA AGAJANOV BOARD MEMBER 1 X 0 0 0 SARAH GOLDBERG BOARD MEMBER 1 X 0 0 0 MARIA BARROS BOARD MEMBER 1 X 0 0 0 LUKE ROSEN BOARD MEMBER 1 X 0 0 0 SALLY JACKSON BOARD MEMBER 1 X 0 0 0 82319 0 0 0 0 0 0 0 0 0 39038 0 0 1776611 0 1815649 REGISTRATION FEES 900099 7990 7990 0 0 7990 7135 0 0 7135 0 0 0 0 0 0 0 0 0 0 0 0 28394 39038 0 28394 0 28394 REIMBURSEMENT 900099 3753 3753 0 0 0 0 0 0 3753 1862921 11743 0 35529 X 0 6698 6698 82235 63327 12937 5971 99620 76715 15672 7233 4609 3448 814 347 7214 1043 6093 78 14777 11817 1960 1000 6426 6426 10930 10930 112180 110934 1246 8598 5232 503 2863 1985 1985 14769 14769 66228 65049 1179 DUES & SUBSCRIPTIONS 10440 72 10368 0 BANK CHARGES & PROCESSING FEES 6850 0 6850 0 453559 359104 76963 17492 218316 346303 127545 1156018 218316 1629866 0 0 X 218316 1559866 0 70000 218316 1629866 218316 1629866 1409362 2188 0 0 0 0 X 0 0 0 X 816181 557413 206859 292389 1815649 3688491 816181 557413 206859 292389 1815649 3688491 75560 3612931 7135 7135 4 22611 3753 26368 3721994 38579 0.97070 0.95368 X Schedule A, Part II, Line 10 MISCELLANEOUS REVENUE RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED MILES THAT MATTER 67432 39038 28394 0 0 0 0 0 0 0 0 67432 39038 28394 0 0 0 0 0 0 0 28394 1 TRAVEL ASSISTANCE FOR THE 2025 CONFERENCE 5 6698 Schedule I, Part I, Line 2 GRANTS ARE AWARDED WITH THE UNDERSTANDING THAT THE RECIPIENTS WILL USE THE FUNDS FOR THE APPROPRIATE PURPOSE. Form 990, Part VI, Section A, Line 2 NON-VOTING HONORARY BOARD MEMBERS: LUKE ROSEN AND SALLY JACKSON, ARE MARRIED. Form 990, Part VI, Section B, Line 11b THE 990 IS REVIEWED AND APPROVED BY THE BOARD OF DIRECTORS PRIOR TO FILING. Form 990, Part VI, Section B, Line 12c BOARD MEMBERS ARE REQUIRED TO DISCLOSE ANY COI PRIOR TO ENTERING INTO ANY ARRANGEMENTS, FINANCIALLY OR OTHERWISE. Form 990, Part VI, Section C, Line 19 UPON REASONABLE REQUEST ABD PUBLIC WEBSITES. THE FINANCIAL UPDATES ARE PROVIDED DURING COMMUNITY MEETINGS, AND IN THE ANNUAL REPORT. FORM 990 CAN BE ACCESSED VIA IRS.GOV AND GUIDESTAR.ORG. Form 990, Part IX, Line 11g RESEARCH AND DEVELOPMENT AND PAYROLL SERVICE FEES