2026-07-27T08:17:44-05:00 2025-12-31 541342298 Kositzka Wicks and Company 5270 Shawnee Road Suite 250 Alexandria VA 22312 990 2025-01-01 133753992 Moebius Syndrome Foundation MOEB 8446632487 1312 17th Street 976 Denver CO 80202 Rebecca Maher President 8446632487 2026-07-16 1 Jennica Jardine Whitfield CPA P01379267 7036422700 2025 2025-03-06 01:10:19Z Rebecca Maher 1312 17th Street 976 Denver CO 80202 1444793 0 X www.moebiussyndrome.org X 1994 CO To provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. 11 11 2 111 0 0 275943 961604 5761 38678 56102 67729 351 4740 338157 1072751 22400 227648 0 0 134688 159010 0 0 22228 125995 373745 283083 760403 55074 312348 1978268 2539041 8019 105458 1970249 2433583 X The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with moebius syndrome and their families, promote greater awareness and understanding of moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of moebius syndrome and its associated conditions. 0 0 389038 43418 Provide information and support to individuals with Moebius syndrome and their families. The newsletter and biannual conference are the primary means of accomplishing this goal. 246643 203648 Advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. 24000 24000 To provide college scholarships to students with Moebius Syndrome. 659681 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 5 0 1 2 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 11 0 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AL AR AK CA CO FL GA HI IL KS KY MD MA MI MS MN NH NJ NM NY NC OH OR PA RI SC TN VA WV WI X Moebius Syndrome Foundation 8446632487 4637 91ST AVE SE Mercer Island WA 98040 Rebecca Maher President 10.00 X X 0 0 0 Steven Maldonado Vice President 2.00 X X 0 0 0 Destiny Bachman Treasurer 10.00 X X 0 0 0 Jon Fisher Secretary 10.00 X X 0 0 0 Bryn Webb MD Board Member 2.00 X 0 0 0 KiOwana Phillips Board Member 2.00 X 0 0 0 Kathryn Kraus McClure MD Board Member 2.00 X 0 0 0 Michael Mendenhall Esq Board Member 2.00 X 0 0 0 Bobby Medow Board Member 2.00 X 0 0 0 Tara Lewis PhD Board Member 2.00 X 0 0 0 Lucia Santistevan MD Board Member 2.00 X 0 0 0 Jennifer Whitman Executive Director 50.00 X 95392 0 0 95392 0 0 0 0 0 0 0 961604 961604 Conference registratio 611430 38678 38678 38678 55616 55616 384155 372042 12113 12113 12113 Miscellaneous income 900099 4740 4740 4740 1072751 43418 0 67729 224000 224000 3648 3648 95387 80567 14665 155 51788 43736 7964 88 11835 9512 2305 18 6000 6000 14770 14370 400 14112 14112 20505 10325 10180 23944 2377 21567 7333 3342 3991 2665 2575 90 252819 252358 461 2041 2041 Postage, printing, and 15469 14714 755 Dues, licenses, and sub 11711 10755 956 Membership events 1323 1323 Board Expenses 1053 449 604 760403 659681 78494 22228 70710 804327 500 2625 924 1907058 1727503 0 3662 1978268 2539041 8019 5458 100000 8019 105458 X 1923410 1841865 46839 591718 1970249 2433583 1978268 2539041 312348 150986 0 X 0 1 X 0 0 X 488888 240979 226576 275943 961604 2193990 69422 66366 5761 38678 180227 488888 310401 292942 281704 1000282 2374217 0 91419 95000 95000 767151 1048570 91419 95000 95000 767151 1048570 1325647 21766 47724 68247 56102 55613 249452 21766 47724 68247 56102 55613 249452 510654 358125 361189 337806 1055895 2623669 0.50530 0.69820 0.09510 0.13230 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 1209625 150986 150986 1058639 14112 14112 1072751 746291 0 746291 14112 14112 760403 Part X, Line 2: Moebius Syndrome Foundation is exempt from income taxes under Section 501(c)(3) of the Internal Revenue Code. Income from certain activities not directly related to the Organization's exempt purpose is subject to taxation as unrelated business income. The Foundation had no unrelated business income for the year ended December 31, 2025. 1 The Board of Regents University of Wisconsin 1220 Linden Drive Madison WI 53706 396006492 501(C)(3) 100000 0 For scientific and/or clinical research on Moebius syndrome Northwestern University 633 Clark St Evanston IL 60208 362167817 501(C)(3) 100000 0 For scientific and/or clinical research on Moebius syndrome 11 Research Grant 1 1148 Community Empowerment Grant 2 2500 Part I, Line 2: Moebius Syndrome Foundation maintains records and has regular check-ins with the scholarship recipients as the various colleges. Form 990, Part VI, Section A, line 4 During 2025, the Foundation completed a corporate reorganization in which the Delaware corporation merged into a Colorado corporation. The Delaware corporation was dissolved, and Moebius Syndrome Foundation, Inc. was incorporated in Colorado on September 15, 2025. The change did not affect the organization's charitable mission or exempt purpose. Form 990, Part VI, Section B, line 11b All board members receive a copy of the Form 990. It is reviewed by the officers before filing. Form 990, Part VI, Section B, line 12c The Foundation monitors and enforces compliance with its conflict of interest policy through an annual disclosure process for covered individuals, documentation of disclosed conflicts, review and resolution by the Board when applicable, and confirmation that conflict of interest matters are addressed and recorded in board meeting minutes. The Board Chair and Executive Director maintain a compliance log to track annual form collection, disclosures made during the year, actions taken, recusals, unresolved items, and year-end compliance status. Form 990, Part VI, Section B, line 15a The Foundation maintains a written Executive Director Compensation Policy requiring an annual compensation review by independent board members. Under the policy, the reviewing body gathers and considers comparability data from at least two independent sources before recommending or approving compensation. The review includes consideration of the Executive Director's responsibilities, the organization's size and financial position, relevant geographic factors, and the total compensation package, including salary and benefits. The Board records the members participating in the review, confirms the absence of conflicts of interest, documents the comparability data and contextual factors considered, and records the approval and basis for its determination in board minutes. The completed comparability review form and supporting documentation are retained in the Foundation's permanent governance records. Form 990, Part VI, Section C, line 18 These documents are made available upon request. Form 990, Part VI, Section C, line 19 These documents are made available upon request.