2023-11-14T05:56:19-08:00 2022-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2022-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2023-11-13 true Glenn ONeill 999009999 true Will Stevens CPA P01208094 8037990555 2 AAL1 IAL1 FAL1 2022 2023-04-26 12:10:37Z Glenn O'Neill PO Box 6901 Columbia SC 29260 3470418 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 6 6 4 0 2078776 2238613 0 186864 483599 -35760 -14767 2229880 2707445 1963579 1633999 0 445653 460741 0 124351 177106 192357 2586338 2287097 -356458 420348 10337575 9625770 21192 10337575 9604578 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 2050871 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 2050871 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 false 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 6 6 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 135200 0 24548 Katie Walton Vice President 40.00 0.00 X 108150 0 1081 Cara O'Neill Chief Science 40.00 0.00 X 87500 0 875 Ben Von Wong Director 2.00 0.00 X 7500 0 0 Daniel Fraley Board Chair 2.00 0.00 X 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 Adam Shaywitz Director 2.00 0.00 X 0 0 0 338350 26504 2 false true false 0 246024 1992589 2238613 0 118758 118758 0 0 0 1081729 716888 364841 364841 364841 29537 246024 46085 -16548 0 0 Other Income 1781 1781 1781 2707445 485380 1243718 1243718 0 390281 390281 0 330850 215052 49628 66170 0 52101 33866 7815 10420 0 49141 31942 7371 9828 28649 18622 4297 5730 0 18048 13536 4512 17680 17680 0 0 0 0 42276 29593 12683 10237 6654 1536 2047 0 0 0 9822 7367 2455 0 9976 6485 1496 1995 0 0 0 2172 2172 Program Expense 23906 23906 Web Service 20520 15390 5130 Rent/Lease 10509 6830 1577 2102 Merchandise 8941 8941 18270 7629 6206 4435 2287097 2050871 111875 124351 962628 1127606 827602 790274 0 25453 0 0 0 0 3871 0 8547345 7678566 0 0 0 0 10337575 9625770 21192 0 21192 X 10337575 9604578 10337575 9604578 10337575 9625770 X 420348 -1312869 -14717 174241 X false true X true false X 2052054 1256624 1862485 2135123 2268151 9574437 0 0 2052054 1256624 1862485 2135123 2268151 9574437 0 9574437 31628 127390 233157 186864 483599 1062638 0 10483 7985 1436 1781 21685 10658760 0.89830 0.71350 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 1425945 -1312869 31369 -1281500 2707445 2707445 2333182 46085 46085 2287097 2287097 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, 2022 & 2021, 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 $46086 Investment Expenses $-14717 PPP Loan $0 Part XII, Line 2d: Other expenses and losses per audited F/S Fundraising Expenses $46085 true Europe 0 0 Grants See Schedule O 220448 Australia 0 0 Grants See Schedule O 105333 Middle East 0 0 Grants See Schedule O 22500 348281 348281 Jerusalem, Isra See Sch O 22500 Wire Trans FMV Melbourne, Aust See Sch O 50000 Wire Trans FMV Naples, Italy See Sch O 140250 Wire Trans FMV Naples, Italy See Sch O 42000 Wire Trans FMV Pozzuoli, Italy See Sch O 80198 Wire Trans FMV Sydney, Austral See Sch O 55333 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 149625 138405 11220 13047 Golf Event 33000 25080 7920 7745 6 92936 82539 10397 15299 2465 7529 275561 246024 29537 36091 2465 7529 46085 -16548 true Albert Einstein College of Me 1300 Morris Park Avenue Bronx NY 10461 830621846 50000 0 Screen plus newborn screening Clemson University 105 Sikes Hall Clemson SC 29634 576000254 85000 0 Identifying Disease Modifiers in Dr Lundquist Institute 1124 West Carson Street Torrance CA 90502 952138184 71059 0 Open-label pilot study Phoenix Nest 254 36th St Brooklyn NY 11232 454742767 51750 0 Gene Therapy JLK-247 for regulatory Regents of UC - San Diego 1995 University Avenue La Jolla CA 94704 943067788 128958 0 Novel Immune Deficient MPSIIIA ReMotor Therapeutics PO Box 12345 Doral FL 33122 842453328 466500 0 Transplant MPSIII human neural syst University of North Carolina 104 Airport Dr 2200 Chapel Hill NC 27599 566001393 386635 0 Systemic scAAV9 4 2 false false false false false false false false false Glenn O'Neill Exe Dir/Pres 135200 1144 23404 159748 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. Form 990, Part XI, Line 9 Cash to Accrual Adjustment = $174241 Antifungal immunity in patients with mucopolysaccharidosis TITLE: Antifungal immunity in patients with mucopolysaccharidosisAwardee: Hebrew University of JerusalemAMOUNT IN 2022: $22,500.00Date: May 10, 2022. 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 2022: $128,958.00Date: June 10, 2022 and November 7, 2022. Discovery and validation of translational biomarkers for TITLE: Discovery and validation of translational biomarkers for Sanfilippo childhood dementia Awardee: Monash UniversityAMOUNT IN 2022: $50,000.00Date: Payments made in September 6, 2022 and December 22,2022. Exploring novel photobiomodulation parameters in an animal model of Sa TITLE: Exploring novel photobiomodulation parameters in an animal model of Sanfilippo syndromeAwardee: University of Sydney and Flinders UniversityAMOUNT IN 2022: $55,333.00Date: January 27, 2022 and April 7, 2022. Grant Detail The following grants were provided: Identifying Disease Modifiers TITLE: Identifying Disease Modifiers in Drosophila Models of MPSIIIAAwardee: Clemson UniversityAMOUNT IN 2022: $85,000.00Date: Payments made in May 12, 2022 and November 7, 2022. In Vivo testing of FDA-approved drug combination for MPSIII Treatment TITLE: The role of heparan sulfate and dopamine as disease' modifiers in Mucopolysaccharidosis type IIIAAwardee: The Telethon Institute of Genetics and Medicine (TIGEM)AMOUNT IN 2022: $80,197.50Date: January 14, 2022 and July 12, 2022. Neuroprotective Peptides for Treatment TITLE: Neuroprotective Peptides for Treatment of Sanfilippo DiseaseAwardee: Phoenix NestAMOUNT IN 2022: $51,750.00Date: Payments made in September 22, 2022. Novel Immune Deficient MPSIIIA Mouse Model Maintenance TITLE: Novel Immune Deficient MPSIIIA Mouse Model MaintenanceAwardee: UC Davis Institute for Regenerative CuresAmount in 2022: $3,816.00Date: August 18, 2022. 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 2022: $71,059.00Date: September 21, 2022. Screen Plus Newborn Screening TITLE: Screen Plus Newborn ScreeningAwardee: Albert Einstein College of MedicineAMOUNT IN 2022: $50,000.00Date: Payments made in March 8, 2022 and July 26, 2022. 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 2022: $56,250.00DATE: July 14, 2022 Systemic scAAV9-mCMV-hSGSH gene TITLE: Systemic scAAV9-mCMV-hSGSH gene delivery for treating MPSAwardee: Office of Sponsored Research University of North CarolinaAMOUNT IN 2022: $386,635.00Date: Payments made in December 15, 2022. 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 2022: $126,000.00Date: January 26, 2022 and December 9, 2022. Transplant MPSIII Human Neural Stem Cells TITLE: Transplant MPSIIA human neural stem cells engineered to overexpress and secrete SGSHAwardee: ReMotor TherapeuticsAMOUNT IN 2022: 466,500.00Date: Payments made in September 6, 2022.