2025-11-11T08:44:52-08:00 2024-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2024-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2025-11-07 true true Will Stevens CPA P01208094 8037990555 2024 2025-03-06 01:10:19Z Glenn O'Neill PO Box 6901 Columbia SC 29260 3143445 false X www.CureSanfilippoFoundation.org X 2013 SC To accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo syndrome, drive advocacy to improve care and outcomes, and empower families with information, guidance, and support to navigate the journey. 7 7 5 0 1746032 2221552 0 292943 580274 67417 -20677 2106392 2781149 570714 643960 0 525974 630558 0 146325 195997 298441 1292685 1572959 813707 1208190 11198610 13871255 24536 135072 11174074 13736183 To accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo syndrome, drive advocacy to improve care and outcomes, and empower families with information, guidance, and support to navigate the journey. false false 1259871 To accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo syndrome, drive advocacy to improve care and outcomes, and empower families with information, guidance, and support to navigate the journey. 1259871 true true false false false false false false false false false false false true false true true false false false true true false false true false false true false true false false false false false false false false false false false false true false false false false true X 8 0 true 5 true false false false false false false false 0 false false false false false false false X 7 7 true false false false false false false true true false false true true true true true true true true false SC X Glenn O'Neill 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill Exe Dir/Pres 50.00 0.00 X 139049 0 22057 Cara O'Neill Chief Science 40.00 0.00 X 124759 0 21437 Katie Walton Vice President 40.00 0.00 X 118051 0 4676 Daniel Fraley Board Chair 2.00 0.00 X X 0 0 0 Jessica Haywood Director 2.00 0.00 X 0 0 0 Faith McAngus Director 2.00 0.00 X 0 0 0 Shelby Leonardi Secretary 2.00 0.00 X X 0 0 0 Mike Lykes Director 2.00 0.00 X 0 0 0 Ben Von Wong Director 2.00 0.00 X 0 0 0 Adam Shaywitz Director 2.00 0.00 X 0 0 0 381859 48170 3 false true false 0 516900 1704652 2221552 0 372815 372815 0 0 0 481429 273970 207459 207459 207459 52962 516900 88326 -35364 0 0 Bank Cash Back 3037 3037 Refund Credit 1650 1650 Sales 10000 10000 14687 2781149 594961 255540 255540 0 388420 388420 0 381859 248209 57278 76372 0 144918 94196 21739 28983 17967 11679 2695 3593 47908 31140 7186 9582 37906 24639 5686 7581 0 124719 93539 31180 10935 10935 0 0 0 0 32349 22644 9705 9795 6366 1469 1960 0 0 0 31597 23697 7900 0 9249 6012 1387 1850 0 0 0 4806 4806 Contractors 18599 12089 2790 3720 Program Expense 14554 14554 Rent/Lease 12675 8238 1902 2535 Web Service 10765 8074 2691 18398 10835 7119 444 1572959 1259871 166763 146325 1829121 2399469 66283 73091 0 54790 90287 0 0 0 0 7900 15837 0 9240516 10235625 0 0 0 1056946 11198610 13871255 24536 135072 24536 135072 X 11174074 13736183 11174074 13736183 11198610 13871255 1208190 366669 -17946 1005196 X false true X true false X 1862485 2135123 2268151 1849786 2273329 10388874 0 0 1862485 2135123 2268151 1849786 2273329 10388874 0 10388874 233157 186864 483599 292943 580274 1776837 0 7985 1436 1781 2116 14687 28005 12193716 0.85200 0.87430 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Investment in Phoenix Nest 1056946 1056946 X 3218198 366669 88326 454995 2763203 17946 17946 2781149 1661285 88326 88326 1572959 1572959 Part X : FIN48 Footnote The foundation has received a determination letter from the IRS indicating it is a tax-exempt organization under Section 501(c)(3) of the IRC and is subject to federal income tax only on unrelated business income. Management is not aware of any transactions that would jeopardize their tax-exempt status. Accounting principles generally accepted in the USA require management to evaluate tax positions taken by the Foundation and to recognize tax liability (or asset) if the Foundation has taken an uncertain position that more likely than not would not be sustained upon examination by the IRS. Management has analyzed the tax position taken by the foundationand has concluded that as of December 31, 2024 & 2023, there are no uncertain positions taken or expected to be taken that would require recognition of a liability (or asset) or disclosure in the financial statements. The Foundation is subject to routine audits by taxing jurisdictions; however, there are currently no audits for any tax periods in progress. Management believes it is no longer subject to income tax examinations for fiscal years prior to 2020. US State jurisdictions have statutes of limitations that generally range from 3-5 years. Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 Fundraising Expenses $88326 Part XII, Line 2d: Other expenses and losses per audited F/S Fundraising Expenses $88326 true Europe 0 0 Grants See Schedule O 201768 North America 0 0 Grants See Schedule O 63000 Australia 0 0 Grants See Schedule O 123652 388420 388420 Adelaide, Austr See Sch O 36152 Wire Trans FMV Manchester, UK See Sch O 40419 Wire Trans FMV Melbourne, Aust See Sch O 87500 Wire Trans FMV Montreal, Canad See Sch O 63000 Wire Trans FMV Naples, Italy See Sch O 121250 Wire Trans FMV Pozzuoli, Italy See Sch O 40099 Wire Trans FMV 6 true false false false false false X X X true SC AL AK AR CA CO CT FL KS KY ME MD MA MO NV NH NM NY ND OH OK OR PA RI UT WA WV DE GA HI MI MN TN WI Golf/Auction 202126 190786 11340 16347 Golf Event 188000 169800 18200 32746 70 8 179736 156314 23422 22965 16198 569862 516900 52962 72058 16268 88326 -35364 true Clemson University 105 Sikes Hall Clemson SC 29634 576000254 42500 0 Neuroprotective peptides for treatm Regents of UC - San Diego 1995 University Avenue La Jolla CA 94704 943067788 120000 0 Treating Mucopolysaccharidosis Regents of UC - San Diego 1995 University Avenue La Jolla CA 94704 943067788 43065 0 Blood-based biomarkers University of Georgia Herty Dr Athens GA 30602 586001998 49976 0 Peropheral Neural Stem Cell Models 0 4 false false false false false false false false false Glenn O'Neill Exe Dir/Pres 139049 5516 16541 161106 Form 990, Part VI, Section A, Line 2 Glenn ONeill and Cara ONeill MD FAAP are husband and wife. Form 990, Part VI, Section B, Line 11b All Board Members have reviewed the Form 990. Form 990, Part VI, Section B, Line 12c Conflicts of interest are reviewed during Board Meetings Form 990, Part VI, Section B, Line 15a The Employment Committee is responsible for all hiring decisions, including compensation, benefits, job performance etc... The Board members make up the Employment Committee. The Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees. Form 990, Part VI, Section B, Line 15b The Employment Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees. Form 990, Part VI, Section C, Line 19 The organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website. Blood-based biomarkers for Sanfilippo syndrome progression and treatme TITLE:Blood-based biomarkers for Sanfilippo syndrome progression and treatmentAwardee: The Regents of the University of CaliforniaAMOUNT IN 2024: $43,064.50Date: Payments made in August 19,2024. Combination of HSCP transplantation and cathepsin B inhibitors for tre TITLE: Combination of HSCP transplantation and cathepsin B inhibitors for treatment of Sanfilippo diseaseAwardee: Centre Hospitalier Universitaire Sainte-Justine (CHU Sainte-Justine)Amount in 2024: $63,000Date: December 5, 2024. Discovery and validation of translational biomarkers for Sanfilippo ch TITLE: Discovery and validation of translational biomarkers for Sanfilippo childhood dementiaAwardee: Monash University Amount in 2024: $87,500.00Date: June 24, 2024, June 25, 2024, October 1,2024 and November 15,2024. Grant Detail The following grants were provided: Neuroprotective Peptides for Treatment TITLE: Swift in vitro evaluation of disease-modifying drugs for attenuated forms of SanfilippoAwardee: Flinders UniversityAMOUNT IN 2024: $36,152.00Date: Payments made in May 14,2024. Neuroprotective Peptides for Treatment of Sanfilippo Disease TITLE: Neuroprotective Peptides for Treatment of Sanfilippo DiseaseAwardee: Phoenix NestAMOUNT IN 2024: $51,750.00Date: Payments made in May 20,2024. Peripheral Neural Stem Cell Models and Drug Discovery for Sanfilippo S TITLE: Peripheral Neural Stem Cell Models and Drug Discovery for Sanfilippo SyndromeAwardee: University of GeorgiaAmount in 2024: $49,976.00Date: May 17, 2024 and December 17, 2024. Pharmacological chaperone and substrate reduction therapy with N-subst TITLE: Pharmacological chaperone and substrate reduction therapy with N-substituted L-iminosugars for the treatment of Sanfilippo B diseaseAwardee: University of Naples Federico IIstitAMOUNT IN 2024: $25,000.00Date: May 20, 2024. Pre-clinical evaluation of an iPSC-based therapeutic modality to rescu TITLE: Pre-clinical evaluation of an iPSC-based therapeutic modality to rescue MPS IIA neuropathology, and characterization of MPS IIIC iPSC neural progenitor cells Awardee: The University of Manchester Amount in 2024: $40,419.14Date: May 14,2024 and December 3,2024. Prior Period Adjustments During the current year it was discoverd that the issuance of a convertible note and its subsequent conversion into common shares was not accounted for correctly in prior periods.The Foundation has restated the opening balances of net assets and accounts receivable as of January 1, 2024, to reflect the impact of recognizing the convertible promissory note and related entries in the audit. This adjustment has been applied to the Form 990 as a Prior Period Adjustment. Strengthening the rationale for the use of the "molecular tweezer" CLR TITLE: Strengthening the rationale for the use of the "molecular tweezer" CLR01 in the treatment of Sanfilippo syndromeAWARDEE: Ceinge BiotechAMOUNT IN 2024: $56,250.00Date: June 14, 2024. Susequent Event The gene therapy vector production project for Sanfilippo syndrome at the University of North Carolina at Chapel Hill, which Cure Sanfilippo Foundation was supporting, encountered production challenges and has been discontinued. The Foundations investments in the project have been recovered and the matter has been resolved. Targeting Heparan Sulfate Proteoglycans as a Novel Therapeutic Strateg TITLE: Targeting Heparan Sulfate Proteoglycans as a Novel Therapeutic Strategy for Sanfilippo diseasesAwardee: University of Naples Federico II (UNINA)AMOUNT IN 2024: $40,000.00Date: Payments made in October 18, 2024. The role of heparan sulfate and dopamine as disease modifiers in Mucop TITLE: The role of heparan sulfate and dopamine as disease modifiers in Mucopolysaccharidosis type IIIAAwardee: Telethon Institute of Genetic and Medicine (TIGEM)AMOUNT IN 2024: $40,098.75Date: June 14, 2024. Treating Mucopolysaccharidosis Type IIIC with Hematopoietic Stem Cell TITLE: Treating Mucopolysaccharidosis Type IIIC with Hematopoietic Stem Cell Gene TherapyAwardee: The Regents of the University of California (UCSD)Amount in 2024: $120,000Date: April 22,2024 and December 3,2024. Swell Therapeutics LLC PO Box 6901 Columbia SC 29260 934530788 Advance drug discovery and clinical translation SC N/A false false false false false false false false false false false false false false false false false false false