2026-09-18T12:37:06-05:00 2025-12-31 680037990 GILBERT CPAS 2880 GATEWAY OAKS DR STE 100 SACRAMENTO CA 95833 990 2025-01-01 811260031 THE WIEDEMANN-STEINER SYNDROME FOUNDATION WIED 9165022120 1314 44TH STREET SACRAMENTO CA 95819 LIBBY WOOLFORD PRESIDENT 9165022120 2026-09-15 1 AMANDA H WILLIAMS P01281212 9166466464 2026-09-15 2025 LIBBY WOOLFORD 1314 44TH STREET SACRAMENTO CA 95819 285219 0 X WWW.WSSFOUNDATION.ORG X 2016 CA EDUCATE THOSE AFFECTED BY WIEDEMANN-STEINER SYNDROME, A RARE GENETIC CONDITION, AND TO SUPPORT AND ADVOCATE FOR ONGOING SCIENTIFIC RESEARCH. 8 8 0 30 0 0 245662 253990 0 0 34636 30939 -5945 -4509 274353 280420 2176 30000 0 0 0 0 0 0 1565 110681 72671 112857 102671 161496 177749 1023103 1199609 1284 41 1021819 1199568 X THE WIEDEMANN-STEINER SYNDROME FOUNDATION PROVIDES EDUCATION, FOSTERS COMMUNITY, AND STIMULATES RESEARCH TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY WSS. 0 0 77721 30000 290 EXPANDED OUTREACH THROUGH ITS FAMILY VOLUNTEERS TO SERVE AS REGIONAL AMBASSADORS AND HOSTED SEVERAL IN-PERSON AND VIRTUAL ACTIVITIES TO RAISE AWARENESS OF WSS INCLUDING THE MONTHLY EXPERT VIRTUAL DISCUSSIONS TO EDUCATE THE WSS COMMUNITY, ANNUAL WSS QUADRATHALON, AND INTERNATIONAL WSS AWARENESS DAY. RAISED AWARENESS AND SUPPORT TO INITIATE MEDICAL RESEARCH ON THE WSS GENE BY APPROVING FUNDING FOR A NEW NATURAL HISTORY STUDY TO BUILD ON THE WORK DONE THROUGH TWO PRIOR GRANTS IN PROGRESSING OUR KNOWLEDGE OF THE GENE. LEVERAGED THE SCIENTIFIC ADVISORY BOARD IN RUNNING A PROCESS TO SOLICIT CELL LINE STUDY PROPOSAL,S AND AFTER EVALUATING, ULTIMATELY APPROVING FUNDING FOR THREE PROPOSALS TO PROCEED IN 2026. STARTED THE TRANSITION TO A NEW WEBSITE PLATFORM TO SUPPORT PROVIDING MORE RESOURCES, AS WELL AS ALLOW BETTER NETWORKING FOR THOSE AFFECTED BY WSS. 77721 1 1 0 0 0 0 0 0 0 0 0 1 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 4 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 8 8 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 0 0 0 CA AL AK CO CT FL GA IL KS ME MD MA MN MS NH NJ NY NC ND OH OK PA RI SC TN VA WA AR HI KY MI NM OR WV NV WI DC LA UT X X LIBBY WOOLFORD 9165022120 1314 44TH STREET SACRAMENTO CA 95819 X LIBBY WOOLFORD PRESIDENT 10.00 X X 0 0 0 THOR MISKO CHIEF OPERATING OFFICER 4.00 X X 0 0 0 DREW SCHAEFER TREASURER 4.00 X X 0 0 0 KIM LAGRAVINESE SECRETARY 6.00 X X 0 0 0 TOBIAS DAVIS BOARD MEMBER 4.00 X 0 0 0 SARAH SPEAR BOARD MEMBER 1.00 X 0 0 0 ANNABEL CORBETT BOARD MEMBER 3.50 X 0 0 0 ALEXANDRA GILLETT BOARD MEMBER 3.00 X 0 0 0 0 0 0 0 0 0 0 0 171484 82506 253990 30939 30939 0 171484 4799 -4799 -4799 MISCELLANEOUS REVENUE 900099 290 290 290 280420 290 0 26140 X 30000 30000 8855 8855 52579 46198 4816 1565 3384 3384 313 313 191 191 2926 2926 TAXES AND LICENSES 2446 737 1709 OTHER EXPENSES 1977 595 1382 102671 77721 23385 1565 11712 63529 183354 300092 1000 3500 48143 50175 778894 782313 1023103 1199609 1284 41 1284 41 X 1021819 1199568 1021819 1199568 1023103 1199609 177749 0 X X 1 X 0 1 0 X 187098 225335 228689 245662 253990 1140774 187098 225335 228689 245662 253990 1140774 20000 55000 80100 65644 125260 346004 0 20000 55000 80100 65644 125260 346004 794770 78 758 11817 34636 30939 78228 78 758 11817 34636 30939 78228 769 1723 747 764 290 4293 187945 227816 241253 281062 285219 1223295 0.64970 0.72770 0.06390 0.04430 X SCHEDULE A, PART III, LINE 12, EXPLANATION OF OTHER INCOME: MISCELLANEOUS - 2021 AMOUNT: $ 769. 2022 AMOUNT: $ 1,723. 2023 AMOUNT: $ 747. 2024 AMOUNT: $ 764. 2025 AMOUNT: $ 290. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 CERTIFICATES OF DEPOSIT 782313 F 782313 X PART X, LINE 2: THE FOUNDATION HAS APPLIED THE ACCOUNTING PRINCIPLES RELATED TO THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES AND HAS DETERMINED THERE IS NO MATERIAL IMPACT ON THE FINANCIAL STATEMENTS. GIVING TUESDAY/YEAREND CAMPAIGN 75711 75711 WSS KIDS TRIATHLON 33030 33030 3659 4 62743 62743 1140 171484 171484 4799 4799 -4799 1 KENNEDY KRIEGER INSTITUTE 707 NORTH BROADWAY BALTIMORE MD 21205 521524965 501 (C) (3) 30000 0 THE PURPOSE OF THIS GRANT IS TO COMPREHENSIVELY EXAMINE COGNITIVE CORRELATES OF BEHAVIORAL FUNCTIONING TO IDENTIFY TARGET AREAS FOR EARLY BEHAVIORAL INTERVENTIONS. 1 PART I, LINE 2: THERE IS A COMMITMENT AGREEMENT BETWEEN THE FOUNDATION AND THE GRANTEE OUTLINING THE SCOPE OF THE PROJECT, WHICH WAS SELECTED AS A PRECURSOR TO LARGER RESEARCH EFFORTS. GRANT PAYMENTS ARE CONTINGENT ON COMPLETION OF AGREED UPON DELIVERABLES. FORM 990, PART VI, SECTION A, LINE 8B THE ORGANIZATION DOES NOT HAVE COMMITTEES WITH AUTHORITY TO ACT ON BEHALF OF THE GOVERNING BODY. FORM 990, PART VI, SECTION B, LINE 11B THE TREASURER WILL SUBMIT THE DRAFT 990 VIA EMAIL FOR REVIEW BY ALL 8 MEMBERS OF THE BOARD OF DIRECTORS AND HAVE AT LEAST A WEEK TO PROVIDE ANY INPUT. THE BOARD PRESIDENT WILL CONDUCT A THOROUGH REVIEW PRIOR TO SIGNATURE. A BOARD MEETING WILL BE CONDUCTED FOR "IN-PERSON" DISCUSSION VIA VIDEO CONFERENCE TO DISCUSS THE DRAFT 990 BEFORE IT IS FILED. FORM 990, PART VI, SECTION B, LINE 12C EACH MEMBER ON THE BOARD OF DIRECTORS SIGNS A DECLARATION FORM ANNUALLY CONSISTENT WITH THE ADOPTED CONFLICT OF INTEREST POLICY. DURING BOARD MEETINGS, MEMBERS IDENTIFY WHETHER THERE ARE ANY CONFLICTS OF INTERESTS RELATED TO ANY BUSINESS BEING CONSIDERED AND WILL BE HANDLED CONSISTENT WITH THE ADOPTED POLICY. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE MADE AVAILABLE TO THE GENERAL PUBLIC UPON REQUEST VIA EMAIL OR AT OFFICE LOCATION. FORM 990, PART IX, LINE 11G OTHER: PROGRAM SERVICE EXPENSES 46,198. MANAGEMENT AND GENERAL EXPENSES 4,816. FUNDRAISING EXPENSES 1,565. TOTAL EXPENSES 52,579. FORM 990, PART XI, LINE 2C THE PROCESSES FOR OVERSIGHT OF THE REVIWED FINANCIAL STATEMENTS AND THE SELECTION OF INDEPENDENT ACCOUNTANT HAS NOT CHANGED FROM THE PRIOR YEAR.