2025-11-13T12:15:57-06:00 2024-12-31 202954888 BRYANS & GRAMUGLIA CPAS LLC 1 PINE WEST PLAZA SUITE 107 ALBANY NY 12205 990 2024-01-01 462699066 THE CUTE SYNDROME FOUNDATION CUTE 4178486203 PO BOX 842 OZARK MO 65721 KACIE CRAIG EXECUTIVE DIRECTOR 4178486203 2025-11-13 1 ROBERT V GRAMUGLIA P00454779 5184528055 2025-11-12 2024 2025-03-06 01:10:19Z X HILLARY SAVOIE 1 MEADOWBROOK LANE TROY NY 12180 391840 0 X WWW.THECUTESYNDROME.COM X 2013 DE OUR MISSION IS TO RAISE AWARENESS OF SCN8A MUTATIONS, FUND THE THE SCIENTISTS RESEARCHING SCN8A, AND SUPPORT THE FAMILIES WHO ARE AFFECTED BY SCN8A. 5 5 0 23 0 0 438048 357095 0 0 1587 7151 0 1044 439635 365290 0 87951 0 0 0 0 0 0 26485 421951 336164 421951 424115 17684 -58825 307586 176654 6356 3773 301230 172881 OUR MISSION IS TO RAISE AWARENESS OF SCN8A MUTATIONS, FUND THE THE SCIENTISTS RESEARCHING SCN8A, AND SUPPORT THE FAMILIES WHO ARE AFFECTED BY SCN8A. 0 0 323510 87951 SUPPORT FOR FAMILIES AFFECTED BY SCN8A. 61813 SUPPORT FOR SCIENTISTS RESEARCHING SCN8A AND RAISING PUBLIC AWARENESS OF THIS GENE MUTATION. 385323 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 1 0 1 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 2 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 5 5 0 0 0 0 0 0 0 1 1 0 0 1 0 1 0 0 0 0 NY X KACIE CRAIG 4718486203 500 WEST WARREN AVE OZARK MO 65721 HILLARY SAVOIE PRESIDENT 0.50 X X 0 0 0 PHILIP GITLEN VICE CHAIR 1.00 X X 0 0 0 RYAN PITINO TREASURER 1.00 X X 0 0 0 MARIANNE SUTCLIFFE SECRETARY 5.00 X X 0 0 0 LAN ARONSON DIRECTOR 0.50 X 0 0 0 KACIE CRAIG EXECUTIVE DIRECTOR 40.00 X 75000 0 0 75000 0 0 0 0 0 0 0 70735 286360 357095 7151 7151 27594 70735 26550 1044 1044 365290 0 0 8195 58657 58657 29294 29294 154800 132400 7500 14900 2325 2325 6030 3015 3015 5965 5368 597 3021 2718 303 16387 16387 103019 103019 781 781 1781 810 971 AWARENESS & FAMILY SUPP 21685 21685 MISCELLANEOUS EXPENSE 13513 5113 730 7670 RESEARCH EXPENDITURES 6857 6857 424115 385323 12307 26485 178822 33153 127762 143280 8584 8363 1002 221 307586 176654 6356 3773 6356 3773 X 301230 172881 301230 172881 307586 176654 -58825 -69524 0 X X 1 X 0 1 0 X 151892 245077 352488 438048 357095 1544600 151892 245077 352488 438048 357095 1544600 1544600 133 153 156 1587 7151 9180 1553780 1408 0.99410 1.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 8584 8363 221 221 X PART X, LINE 2: THE FOUNDATION IS A DELEWARE NOT-FOR-PROFIT CORPORATION AND IS EXEMPT FROM INCOME TAXES AS AN ORGANIZATION QUALIFIED UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE. THE FOUNDATION HAS ALSO BEEN CLASSIFIED BY THE INTERNAL REVENUE SERVICE AS AN ENTITY THAT IS NOT A PRIVATE FOUNDATION. THE FINANCIAL ACCOUNTING STANDARDS BOARD (FASB) ISSUED FASB ASC 740-10 WHICH REQUIRES ENTITIES TO DISCLOSE IN THEIR FINANCIAL STATEMENTS THE NATURE OF ANY UNCERTAINTY IN THEIR TAX POSITION. FOR TAX-EXEMPT ENTITIES, THEIR TAX-EXEMPT STATUS ITSELF IS DEEMED TO BE AN UNCERTAINTY, SINCE EVENTS COULD OCCUR TO JEOPARDIZE THEIR TAX-EXEMPT STATUS. HOWEVER, THE FOUNDATION HAS NO KNOWLEDGE OF EVENTS OR CIRCUMSTANCES THAT WOULD JEOPARDIZE ITS TAX-EXEMPT STATUS. THE FOUNDATION IMPLEMENTED FASB ASC 740-10 AND ITS CURRENT ACCOUNTING POLICY FOR EVALUATING UNCERTAIN TAX POSITIONS IS IN ACCORDANCE WITH GENERALLY ACCEPTED ACCOUNTING PRINCIPLES. THE FOUNDATION HAS NOT RECOGNIZED ANY BENEFITS FROM UNCERTAIN TAX POSITIONS IN 2024 AND BELIEVES IT HAS NO UNCERTAIN TAX POSITIONS FOR WHICH IT IS REASONABLY POSSIBLE THAT THE TOTAL AMOUNTS OF UNRECOGNIZED TAX BENEFITS WILL SIGNIFICANTLY INCREASE OR DECREASE WITHIN 12 MONTHS OF THE STATEMENT OF FINANCIAL POSITION DATE. THE FOUNDATION EVALUATED ITS TAX POSITION AND CONCLUDED THAT ALL OF THE POSITIONS TAKEN BY THE FOUNDATION WOULD MORE LIKELY THAN NOT BE SUSTAINED UPON EXAMINATION, BASED ON TECHNICAL MERITS. THE INFORMATION RETURNS OF THE FOUNDATION FOR 2021, 2022, AND 2023 ARE SUBJECT TO EXAMINATION BY TAX AUTHORITIES, GENERALLY FOR THREE YEARS AFTER THEY WERE FILED. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICE FAMILY SUPPORT 21625 EAST ASIA AND THE PACIFIC 0 0 PROGRAM SERVICE FAMILY SUPPORT 4343 NORTH AMERICA 0 0 PROGRAM SERVICE FAMILY SUPPORT 3326 0 0 0 0 0 0 29294 0 29294 CONNOR JAMES SMITH PATIENT ASSISTANCE GRANT EUROPE 5 3371 TRANSFER 13336 NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. FMV CONNOR JAMES SMITH PATIENT ASSISTANCE GRANT EAST ASIA AND THE PACIFIC 1 TRANSFER 1950 NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. FMV FAMILY TRAVEL GRANTS EUROPE 2 1578 TRANSFER 1340 NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. FMV FAMILY TRAVEL GRANTS EAST ASIA AND THE PACIFIC 1 1488 TRANSFER 905 NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. FMV FAMILY TRAVEL GRANTS NORTH AMERICA 2 1986 TRANSFER 1340 NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. FMV CUTE CONNECTION GRANTS EUROPE 1 2000 TRANSFER FMV 0 0 0 0 0 0 PART I, LINE 2: ALL GRANTS AND ASSISTANCE ARE MANAGED THROUGH APPLICATIONS SUBMITTED VIA OUR WEBSITE USING A HIPAA-COMPLIANT FORM. EACH APPLICATION UNDERGOES A FORMAL REVIEW PROCESS, AND ALL RECORDS, INCLUDING SELECTION CRITERIA AND AWARD DETAILS, ARE MAINTAINED IN SPREADSHEETS BY THE EXECUTIVE DIRECTOR TO MONITOR AND DOCUMENT THE USE OF FUNDS. BOWLING FUNDRAISER 81600 58714 22886 22680 206 VIRTUAL 5K FUNDRAISER 16104 11396 4708 825 97704 70110 27594 22680 1031 23711 3883 1 CONNOR JAMES SMITH PATIENT ASSISTANCE GRANT 10 9546 10465 FMV NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. FAMILY TRAVEL GRANTS 10 7241 30389 FMV NON-CASH ASSISTANCE PROVIDED THROUGH GRANTS OR PAYMENTS MADE DIRECTLY TO VENDORS OR SERVICE PROVIDERS FOR THE BENEFIT OF INDIVIDUALS AND FAMILIES, INCLUDING BUT NOT LIMITED TO MEDICAL, THERAPEUTIC, EDUCATIONAL, TRAVEL, AND END-OF-LIFE EXPENSES. CUTE CONNECTION GRANTS 4 1016 FMV PART I, LINE 2: ALL GRANTS AND ASSISTANCE ARE MANAGED THROUGH APPLICATIONS SUBMITTED VIA OUR WEBSITE USING A HIPAA-COMPLIANT FORM. EACH APPLICATION UNDERGOES A FORMAL REVIEW PROCESS, AND ALL RECORDS, INCLUDING SELECTION CRITERIA AND AWARD DETAILS, ARE MAINTAINED IN SPREADSHEETS BY THE EXECUTIVE DIRECTOR TO MONITOR AND DOCUMENT THE USE OF FUNDS. FORM 990, PART VI, SECTION B, LINE 11B FORM 990 WAS PROVIDED TO THE BOARD FOR REVIEW AND APPROVAL PRIOR TO FILING. FORM 990, PART VI, SECTION C, LINE 19 DOCUMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990 - PART XII - LINE 1 THE FINANCIAL STATEMENTS OF THE CUTE SYNDROME FOUNDATION HAVE BEEN PREPARED ON THE MODIFIED CASH BASIS OF ACCOUNTING. FORM 990 - PART XII - LINE 2C - THE PROCESS HAS NOT CHANGED SINCE THE PRIOR YEAR.