2026-09-09T06:48:48-07:00 2025-12-31 990 2025-01-01 462829156 CURE LBSL CURE 2024874235 3520 S Wakefield St Arlington VA 22206 Morgan Voigt Executive Director 4805708877 2026-09-09 2025 Morgan Voigt 2403 Pond Rd Kailua HI 96734 651672 0 X www.curelbsl.org X 2013 VA PROVIDE FUNDING TO RARE DISEASE RESEARCH AND SUPPORT AFFECTED FAMILIES 7 7 0 10 0 0 1052673 629886 0 0 9 21786 0 0 1052682 651672 636000 123984 0 0 92697 52250 0 0 116455 131196 845152 307430 207530 344242 958132 1315374 -13000 0 971132 1315374 X PROVIDE FUNDING TO RARE DISEASE RESEARCH AND SUPPORT AFFECTED FAMILIES 1 0 214629 141768 0 Cure LBSL's primary mission is to fund critical research into Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL), a rare genetic leukodystrophy. During 2025, the organization supported research initiatives designed to improve understanding of the disease, advance scientific knowledge of disease progression, and explore potential therapeutic approaches. Activities included support for natural history and qualitative patient studies as well as collaborations with academic and clinical research partners. 92801 0 0 Cure LBSL conducted an Externally-Led Patient Focused Drug Development meeting on August 1, 2025. This advocacy initiative gathered patient and caregiver perspectives regarding the impact of LBSL and provided information intended to support regulatory and therapeutic development efforts. 0 0 0 307430 1 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 2 0 1 0 0 0 0 0 0 0 0 0 X 7 7 1 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 0 0 VA X X X ELIZABETH MCGINN 2024874235 3520 S Wakefield St Arlington VA 22206 MORGAN VOIGT EXECUTIVE DIRECTOR 30 X 50000 0 0 LANCE STERN DIRECTOR 1 X 0 0 0 MEGAN MITCHELL DIRECTOR 1 X 0 0 0 CHRIS GULUGIAN DIRECTOR 1 X 0 0 0 EDWARD BLAKELY DIRECTOR 1 X 0 0 0 ELIZABETH MCGINN DIRECTOR 15 0 X X 0 0 0 ELIZABETH GULUGIAN BOARD CHAIR 5 0 X X 0 0 0 MORGAN STERN DIRECTOR 1 X 0 0 0 50000 0 0 0 0 0 0 0 0 0 0 0 0 629886 60411 629886 0 21786 21786 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 651672 21786 0 0 123984 123984 0 50000 50000 2250 2250 1480 1480 17784 17784 1385 1385 5729 5729 8474 8474 92801 92801 3160 3160 MISC EXPENSES 79 79 0 0 BANK FEES 175 175 0 0 PAYROLL PROCESSING 129 129 0 0 307430 307430 0 0 808054 565296 0 0 78 78 0 0 0 0 0 150000 750000 958132 1315374 -13000 -13000 0 X 536465 942707 434667 372667 971132 1315374 958132 1315374 344242 0 0 0 0 0 X 0 0 0 X 599293 1410137 1850787 1052673 629886 5542776 599293 1410137 1850787 1052673 629886 5542776 5542776 1765 9 20756 22530 5565306 0.99595 0.9378 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED DEOS THERAPUTICS 750000 F 750000 1 CHOC Foundation 1120 West La Veta Avenue Suite 500 Orange CA 92868 956097416 501 (C) (3) 123984 n/a n/a Research 1 0 Schedule I, Part I, Line 2 Cure LBSL has different requirements for monitoring funds used by grantees, including but not limited to written reports, meetings and additional documentation, such as receipts. X 60411 60411 Value of Stock 0 0 0 0 Form 990, Part III, Line 2 HOSTED AN EXTERNALLY-LED PATIENT FOCUSED DRUG DEVELOPMENT MEETING ON AUGUST 1, WHICH IS A CRITICAL ADVOCACY EFFORT. Form 990, Part VI, Section A, Line 2 THE BOARD HAS MEMBERS WITH FAMILY RELATIONSHIPS Form 990, Part VI, Section B, Line 11b THE FORM WILL BE EMAILED TO THE BOARD ONCE IT IS COMPLETE AND AVAILABLE FOR PRINT Form 990, Part VI, Section B, Line 12c We, the Directors of "Cure LBSL" resolve that no member of the Board of Directors shall participate in any discussion or vote on any matter in which he or she or a member of his or her immediate family, has potential conflict of interest due to having material economic involvement regarding the matter being discussed. When such a situation presents itself, the director must announce his or her potential conflict, disqualify himself or herself, and be excused from the meeting until discussion is over on the matter involved. The President of the meeting is expected to make inquiry if such conflict appears to exist and the board member has not made it known. Form 990, Part VI, Section C, Line 18 THE 990 IS ALSO AVAILABLE ON GUIDESTAR WHICH IS ACCESSIBLE TO THE PUBLIC Form 990, Part VI, Section C, Line 19 WE DO NOT MAKE OUR POLICIES PUBLIC BUT THEY ARE AVAILABLE ON REQUEST Cure LBSL applied for an extension to file the 2025 form 990; a confirmation letter was received, dated 5/4/2026.