2024-11-11T10:58:55-08:00 2023-12-31 IRS SC-2024-07/08 FEMA 3606-SC & DR-4829 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2023-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2024-11-11 true true Will Stevens CPA P01208094 8037990555 2023 2024-10-15 13:58:12Z Glenn O'Neill PO Box 6901 Columbia SC 29260 2615155 false X www.CureSanfilippoFoundation.org X 2013 SC To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 7 7 4 0 2238613 1746032 0 483599 292943 -14767 67417 2707445 2106392 1633999 570714 0 460741 525974 0 139166 192357 195997 2287097 1292685 420348 813707 9625770 11198610 21192 24536 9604578 11174074 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 1035486 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 1035486 true true false false false false false false false false false false false false 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 3 0 true 4 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 136354 0 26285 Cara O'Neill Chief Science 40.00 0.00 X 121170 0 1212 Katie Walton Vice President 40.00 0.00 X 116592 0 1166 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 Valerie Byers 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 374116 28663 3 false true false 0 238909 1507123 1746032 0 279303 279303 0 0 0 483951 470311 13640 13640 13640 103753 238909 38452 65301 0 0 Other Income 2116 2116 2116 2106392 295059 459167 459167 0 111547 111547 0 402778 261806 60417 80555 0 56143 36493 8421 11229 13160 10504 24 2632 20883 11623 5083 4177 33010 21457 4951 6602 0 21788 16341 5447 11224 11224 0 0 0 0 31639 22147 9492 8477 5510 1272 1695 0 0 0 18282 13711 4571 0 8899 5784 1335 1780 0 0 0 2171 2171 Program Expense 26559 26559 Web Service 20923 15692 5231 Supplies 12405 8063 1861 2481 Merchandise 12268 12268 21362 9082 6025 6255 1292685 1035486 118033 139166 1127606 1829121 790274 66283 0 25453 54790 0 0 0 0 3871 7900 0 7678566 9240516 0 0 0 0 9625770 11198610 21192 24536 21192 24536 X 9604578 11174074 9604578 11174074 9625770 11198610 813707 770967 -15178 X false true X true false X 1256624 1862485 2135123 2268151 1849786 9372169 0 0 1256624 1862485 2135123 2268151 1849786 9372169 0 9372169 127390 233157 186864 483599 292943 1323953 0 10483 7985 1436 1781 2116 23801 10719923 0.87430 0.89830 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 2900634 770967 38453 809420 2091214 15178 15178 2106392 1331138 38453 38453 1292685 1292685 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, 2023 & 2022, 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 2018. 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 $38453 Investment Expenses $0 Part XII, Line 2d: Other expenses and losses per audited F/S Fundraising Expenses $38453 true Europe 0 0 Grants See Schedule O 92000 Middle East 0 0 Grants See Schedule O 19547 111547 111547 Jerusalem, Isra See Sch O 19547 Wire Trans FMV Naples, Italy See Sch O 92000 Wire Trans FMV 2 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 177979 166759 11220 13047 Golf Event 78568 78568 5 86115 72150 13965 18875 1475 5055 342662 238909 103753 31922 1475 5055 38452 65301 true Albert Einstein College of Me 1300 Morris Park Avenue Bronx NY 10461 830621846 25000 0 Screen plus newborn screening Clemson University 105 Sikes Hall Clemson SC 29634 576000254 42500 0 Identifying Disease Modifiers in Dr Lundquist Institute 1124 West Carson Street Torrance CA 90502 952138184 60000 0 Open-label pilot study Phoenix Nest 254 36th St Brooklyn NY 11232 454742767 51750 0 Neuroprotective peptides for treatm Regents of UC - San Diego 1995 University Avenue La Jolla CA 94704 943067788 6139 0 Maintenance and Care of animal mode University of Florida 1600 SW Archer Rd Gainesville FL 32610 596002052 30678 0 Evaluate intestinal motility, absor University of North Carolina 104 Airport Dr 2200 Chapel Hill NC 27599 566001393 240000 0 Systemic scAAV9 0 7 false false false false false false false false false Glenn O'Neill Exe Dir/Pres 136354 1364 24921 162639 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. Antifungal immunity in patients with mucopolysaccharidosis TITLE: Antifungal immunity in patients with mucopolysaccharidosisAwardee: Hebrew University of JerusalemAMOUNT IN 2023: $19,547.00Date: September 18, 2023. Evaluate Intestinal Motility, absorption and look TITLE: Evaluate intestinal motility, absorption and look at the abnormalities of the intestinal tissue through histology, in the MPS IIIB mouseAwardee: University of FloridaAmount in 2023: $30,678.00Date: September 20, 2023. Grant Detail The following grants were provided: Identifying Disease Modifiers TITLE: Identifying Disease Modifiers in Drosophila Models of MPSIIIAAwardee: Clemson UniversityAMOUNT IN 2023: $42,500.00Date: Payments made in May 4, 2023. Maintenance and Care of Animal Models TITLE: Maintenance and Care of animal models for researchAwardee: Scott Ritchey Research CenterAmount in 2023: $3,100.00Date: September 13, 2023. Maintenance and Care of Animal Models TITLE: Maintenance and Care of animal models for researchAwardee: The Regents of the University of CaliforniaAmount in 2023: $6,139.00Date: October 19, 2023 and December 21, 2023. Neuroprotective Peptides for Treatment TITLE: Neuroprotective Peptides for Treatment of Sanfilippo DiseaseAwardee: Phoenix NestAMOUNT IN 2023: $51,750.00Date: Payments made in March 1, 2023. Open-Label Pilot Clinical Trial Study the effects of Anakinra in Mucop TITLE: Open-Label Pilot Study of the effects of Anakinra in Mucopolysaccharidosis MPS) III (clinical trial)AWARDEE: The Lundquist InstituteAMOUNT IN 2023: $60,000.00Date: November 8, 2023. Pharmacological chaperone and substrate reduction therapy TITLE: Pharmacological chaperone and substrate reduction therapy with N-substituted L-iminosugars for the treatment of Sanfilippo B diseaseAwardee: University of Naples Federico IIAmount in 2023: $50,000.00Date: May 16, 2023 and October 26, 2023. Screen Plus Newborn Screening TITLE: Screen Plus Newborn ScreeningAwardee: Albert Einstein College of MedicineAMOUNT IN 2023: $25,000.00Date: Payments made in September 26, 2023. Swell Therapeutics, LLC On November 22, 2023, Cure Sanfilippo Foundation created Swell Therapeutics, LLC. Swell Therapeutics is currently a wholly owned subsidiary of Cure Sanfilippo Foundation. The purpose of Swell Therapeutics is to advance drug discovery and clinical translation with a focus on providing a path for patients with urgent and unmet needs. In the calendar year 2023, there was no activity for Swell Therapeutics. Systemic scAAV9-mCMV-hSGSH gene TITLE: Systemic scAAV9-mCMV-hSGSH gene delivery for treating MPSAwardee: Office of Sponsored Research University of North CarolinaAMOUNT IN 2023: $240,000.00Date: Payments made in July 6, 2023. 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 IIAMOUNT IN 2023: $42,000.00Date: July 19, 2023. 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