2022-11-14T05:47:53-08:00 2021-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2021-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2022-11-11 true Glenn ONeill 999009999 Will Stevens CPA P01208094 8037990555 2 AAL1 IAL1 FAL1 2021 2022-09-23 18:48:47Z Glenn O'Neill PO Box 6901 Columbia SC 29260 2574528 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 1840504 2078776 0 233157 186864 9590 -35760 2083251 2229880 2546156 1963579 0 432175 445653 0 134128 161959 177106 3140290 2586338 -1057039 -356458 10163332 10337575 63451 0 10099881 10337575 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 2348127 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 2348127 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 136170 0 24150 Katie Walton Vice President 40.00 0.00 X 110012 0 0 Cara O'Neill Chief Science 40.00 0.00 X 91574 0 0 Daniel Fraley Board Chair 1.00 0.00 X X 0 0 0 Faith McAngus Director 1.00 0.00 X 0 0 0 Shelby Leonardi Secretary 1.00 0.00 X X 0 0 0 Valerie Byers Director 1.00 0.00 X 0 0 0 Ben Von Wong Director 1.00 0.00 X 0 0 0 Adam Shaywitz Director 1.00 0.00 X 0 0 0 337756 24150 2 false true false 0 291255 1787521 2078776 0 186015 186015 0 0 0 251954 251105 849 849 849 56347 291255 93543 -37196 0 0 Other Income 1436 1436 1436 2229880 188300 1588407 1588407 0 375172 375172 0 361906 235238 54285 72383 0 44704 29058 6706 8940 0 13409 8716 2012 2681 25634 16662 3845 5127 0 30197 22648 7549 14000 14000 0 0 0 0 36957 25870 11087 15450 10042 2318 3090 0 0 0 10428 7821 2607 0 1033 672 155 206 0 0 0 2172 2172 Merchandise 15286 15286 Program Expense 11157 11157 Events 10911 10911 Rent/Lease 10500 6825 1575 2100 19015 9839 6859 2317 2586338 2348127 104083 134128 759032 962628 2011478 827602 0 0 0 0 0 0 0 0 7392822 8547345 0 0 0 0 10163332 10337575 63451 63451 0 X 10099881 10337575 10099881 10337575 10163332 10337575 X -356458 606758 -13075 469 X false true X true false X 1515412 2052054 1256624 1862485 2135123 8821698 0 0 1515412 2052054 1256624 1862485 2135123 8821698 0 8821698 2943703 31628 127390 233157 186864 3522742 0 10483 7985 1436 19904 12364344 0.71350 0.68690 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 2980557 606758 143919 750677 2229880 2229880 2679881 93543 93543 2586338 2586338 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, 2021 & 2020, 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 $93543 Investment Expenses $-13075 PPP Loan $63451 Part XII, Line 2d: Other expenses and losses per audited F/S Fundraising Expenses $93543 true Europe 0 0 Grants See Schedule O 257849 Australia 0 0 Grants See Schedule O 27667 Middle East 0 0 Grants See Schedule O 45000 Canada 0 0 Grants See Schedule O 44656 375172 375172 Naples, Italy See Sch O 112500 Wire Trans FMV Naples, Italy See Sch O 42000 Wire Trans FMV Pozzuoli, Italy See Sch O 103349 Wire Trans FMV Rehovot, Israel See Sch O 45000 Wire Trans FMV Sydney, Austral See Sch O 27667 Wire Trans FMV Toronto, Canada See Sch O 22328 Wire Trans FMV Toronto, Canada See Sch O 22328 Wire Trans FMV 7 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 149505 131572 17933 11340 Golf Event 58388 26188 32200 52251 905 8 139709 133495 6214 25137 1897 2013 347602 291255 56347 88728 1897 2918 93543 -37196 true Albert Einstein College of Me 1300 Morris Park Avenue Bronx NY 10461 830621846 100000 0 Screen plus newborn screening Albert Einstein College of Me 1300 Morris Park Avenue Bronx NY 10461 830621846 25000 0 Screen plus newborn screening Lundquist Institute 1124 West Carson Street Torrance CA 90502 952138184 222463 0 Open-label pilot study Phoenix Nest 254 36th St Brooklyn NY 11232 454742767 125000 0 Gene Therapy JLK-247 for regulatory 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 64479 0 Blood-based biomarkers for Sanfilip Regents of UC - San Diego 1995 University Avenue La Jolla CA 94704 946036494 15015 0 Novel Immune Deficient MPSIIIA ReMotor Therapeutics PO Box 12345 Doral FL 33122 842453328 466500 0 Transplant MPSIII human neural syst 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 46700 0 Facilitate and enhance the CNS entr 4 2 false false false false false false false false false Glenn O'Neill Exe Dir/Pres 136170 1350 22800 160320 Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et Glenn ONeill and Cara ONeill MD FAAP are husband and wife. Form 990, Part VI, Line 11b: Form 990 Review Process All Board Members have reviewed the Form 990. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts Conflicts of interest are reviewed during Board Meetings Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management 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, Line 15b: Compensation Review and Approval Process for Officers and Key Employees The Employment Committee reviews multiple 990's and other resources and comparable benchmarks to establish reasonable compensation for employees. Form 990, Part VI, Line 19: Other Organization Documents Publicly Available The organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website. Other Changes In Net Assets Or Fund Balances - Other Decreases Accrual to Cash Adjustment = -$62982 Other Changes In Net Assets Or Fund Balances - Other Increases PPP Loan = $63451 Antifungal immunity in patients with mucopolysaccharidosis TITLE: Antifungal immunity in patients with mucopolysaccharidosisAwardee: Koret School of Veterinary Medicine - Hebrew University of JerusalemRehovot, IsraelAMOUNT IN 2021: $45,000.00Date: July 23, 2021 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 CaliforniaSan Diego, CaliforniaAMOUNT IN 2021: $64,479.00Date: October 12, 2021 COVID-19 related pivots to Distance formats TITLE: COVID-19 related pivots to Distance formats: advocacy for neuronopathic mucopolysaccharidosis disordersAWARDEE: University of MinnesotaMinneapolis, MN AMOUNT IN 2021: $5,000.00EIN: 41-6007513DATE: January, 20, 2021. 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 UniversitySydney, AustraliaAMOUNT IN 2021: $27,667.00Date: August 23, 2021 Facilitate & Enhance the CNS entry of AAV Vectors to treat MPSIIIA & B TITLE: Facilitate and enhance the CNS entry of systemically delivered AAV vectors for treating MPSIIIA and MPSIIIB in mice.Awardee: Office of Sponsored Research at the University of North CarolinaChapel Hill, NCAMOUNT IN 2021: $46,700.00EIN: 56-6001393Date: November 8, 2021 Gene Therapy JLK-247 for regulatory preclinical safety studies for Pho TITLE: Gene Therapy JLK-247 for regulatory preclinical safety studies for Phoenix Nest for MPS IIICAWARDEE: Phoenix NestBrooklyn, NY AMOUNT IN 2021: $125,000.00DATE: March 1, 2021. Grant Detail The following grants were provided: In Vivo testing of FDA-approved drug combination for MPSIII Treatment TITLE: In Vivo testing of FDA-approved drug combination for MPSIII TreatmentAwardee: The Telethon Institute of Genetics and Medicine (TIGEM)Pozzuoli, ItalyAMOUNT IN 2021: $22,000.00Date: November 9, 2021 NDST1 inhibitors as target for substrate reduction therapy TITLE: NDST1 inhibitors as target for substrate reduction therapyAwardee: The Hospital for Sick ChildrebToronto, ONAMOUNT IN 2021: $44,656.00Date: March & October 2021 Neuroprotective peptides for treatment of Sanfilippo disease TITLE: Neuroprotective peptides for treatment of Sanfilippo diseaseAwardee: Phoenix Nest Inc.Brookyln, NY AMOUNT IN 2021: $51,750.00Date: October 18, 2021 Novel Immune Deficient MPSIIIA Mouse Model Maintenance TITLE: Novel Immune Deficient MPSIIIA Mouse Model MaintenanceAwardee: The Regents of the University of CaliforniaSan Diego, CaliforniaAmount in 2021: $15,015.00Date: October 12, 2021. Open-Label Pilot Clinical Trial Study the effects of Anakinra in Mucop TITLE: Open-Label Pilot Clinical Trial Study the effects of Anakinra in Mucopolysaccharidosis IIIAWARDEE: The Lundquist InstituteTorrance, CAAMOUNT IN 2021: $222,462.50EIN: 95-2138184Date: October 22, 2021. Screen Plus Newborn Screening TITLE: Screen Plus Newborn ScreeningAWARDEE: Albert Einstein College of MedicineBronx, NY 10461AMOUNT IN 2021: $125,000.00EIN: 83-0621846DATE: February & October 2021 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 BiotechNaples, ItalyAMOUNT IN 2021: $112,500.00DATE: March & December 2021 Targeting amyloid agrregation as a new therapeutic approach to treat t TITLE: Targeting amyloid agrregation as a new therapeutic approach to treat the CNS in Sanfilippo SyndromeAwardee: TIGEMPozzuoli, ItalyAMOUNT IN 2021: $41,250.00DATE: February 8, 2021 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 IINaples, ItalyAMOUNT IN 2021: $42,000.00Date: July 12, 2021 The role of heparan sulfate and dopamine as disease' modifiers in Muco TITLE: The role of heparan sulfate and dopamine as disease' modifiers in Mucopolysacchariodosis type IIIAAwardee: TIGEMPozzuoli, Italy AMOUNT IN 2021: $40,098.75Date: November 3, 2021 Transplant MPSIII Human Neural Stem Cells TITLE: Transplant MPSIII human neural stem cells engineered to overexpress and secrete SGSHAwardee: ReMotor TherapeuticsDoral, FLAMOUNT IN 2021: 933,000.00Date: Payments made in March & November 2021.