2021-11-15T06:01:12-08:00 2020-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2020-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2021-11-15 true Glenn ONeill 999009999 Will Stevens CPA P01208094 8037990555 2 AAL1 IAL1 FAL1 2020 2022-09-23 18:48:47Z Glenn O'Neill PO Box 6901 Columbia SC 29260 2483207 false X www.curesff.org X 2013 SC To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 7 7 4 120 0 1211874 1840504 0 127390 233157 6534 9590 1345798 2083251 676206 2546156 0 401485 432175 0 130644 186207 161959 1263898 3140290 81900 -1057039 10749584 10163332 63451 10749584 10099881 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 2910251 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 2910251 true true false false false false false false false false false false false false true true true false false false true true false false true false false true false false false false false false false false false false false false false false false false false false false true X 4 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 Executive Dir. 50.00 0.00 X 133211 0 0 Katie Walton Vice President 40.00 0.00 X 106847 0 0 Cara O'Neill Chief Science 25.00 0.00 X 78230 0 0 Daniel Fraley Board Chair 1.00 0.00 X X 0 0 0 Rachel Best Director 1.00 0.00 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 318288 2 false false false 0 278176 1562328 1840504 0 231496 231496 0 0 0 381241 379580 1661 1661 1661 21981 278176 20376 1605 0 0 Billable Expenditure Rev 7985 7985 7985 2083251 241142 2520506 2520506 0 25650 25650 0 318288 206887 47743 63658 0 51147 33246 7672 10229 0 36291 23589 5444 7258 26449 17192 3967 5290 0 19981 14986 4995 13025 13025 0 0 0 1147 1147 36951 25866 11085 8060 5239 1209 1612 0 0 0 11149 8362 2787 0 0 0 0 0 2172 2172 Events 19247 19247 Rent/Lease 10500 6825 1575 2100 Supplies 10291 6689 1544 2058 Web Service 7139 5354 1785 22297 9860 4330 8107 3140290 2910251 99395 130644 480676 759032 2992715 1427017 0 0 0 0 0 0 0 0 7276193 7977283 0 0 0 0 10749584 10163332 63451 0 63451 X 10749584 10099881 10749584 10099881 10749584 10163332 -1057039 417310 -9462 -512 X true X false true false X 636440 1515412 2052054 1256624 1862485 7323015 0 0 636440 1515412 2052054 1256624 1862485 7323015 0 7323015 1521 2943703 31628 127390 233157 3337399 0 791 791 10661205 18468 0.68690 0.66940 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED PPP Loan 63451 63451 X 2511475 417310 10914 428224 2083251 2083251 3160666 20376 20376 3140290 3140290 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, 2020 & 2019, 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 2016. 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 $20376 Investment Expenses $-9462 Part XII, Line 2d: Other expenses and losses per audited F/S Fundraising Expenses $20376 true Europe 0 0 Grants See Schedule O 22000 Australia 0 0 Grants See Schedule O 3650 25650 25650 Clayton, Austra See Sch O 3650 Wire Trans FMV Pozzuoli, Italy See Sch O 22000 Wire Trans FMV 1 1 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 Trivia Gala 134035 131200 2835 1489 254 Cure for Carson Golf 51695 41039 10656 8894 8 114427 105937 8490 6174 900 2665 300157 278176 21981 15068 2389 2919 20376 1605 true Lundquist Institute 1124 West Carson Street Torrance CA 90502 952138184 322463 0 Open-label pilot study Phoenix Nest 254 36th St Brooklyn NY 11232 379539 0 Gene Therapy for Sanfilippo Type C Regents of UC - San Diego 1995 University Avenue La Jolla CA 94704 946036494 47795 0 Evaluation of substrate recovery th ReMotor Therapeutics PO Box 12345 Doral FL 33122 1400500 0 Transplant MPSIII human neural syst Research Triangle Institute PO Box 900002 Raleigh NC 27675 560686338 15332 0 Caregiver Preference Study TEGA Therapeutics 102 General Atomics Ct G02 San Diego CA 92121 200000 0 MPSIII Enzyme Replacement Project UNC - Chapel Hill 104 Airport Dr 2200 Chapel Hill NC 27599 566001393 108177 0 Pre-clinical work for scAAV9 gene d University of North Carolina 104 Airport Dr 2200 Chapel Hill NC 27599 566001393 46700 0 Facilitate and enhance the CNS entr 0 8 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. Caregiver Preference Study TITLE: Caregiver Preference StudyAWARDEE: Research Triangle InstituteRaleigh, NC AMOUNT IN 2020: $50,833.22EIN: 56-0686338DATE: 5 Payments made in 2020 Creating a MPSIII zebrafish model and brain specific in vivo lysosome TITLE: Creating a MPSIII zebrafish model and brain specific in vivo lysosome reporter for drug screening and invivo imaging of disease pathologyAwardee: Monash UniversityClayton, AustraliaAMOUNT IN 2020: $3,650.00EIN: 81-2161937DATE: May 2020 Evaluation of antisense oligonunleotide-mediated substrate reduction TITLE: Evaluation of antisense oligonunleotide-mediated substrate reduction therapyAWARDEE: Regents of the University of California - San DiegoLa Jolla, CAAMOUNT IN 2020: $47,794.50EIN: 94-3067788DATE: December 2020 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 2020: $46,700.00EIN: 56-6001393Date: June 2020 Gene Therapy project for Sanfilippo Type C using scAAV9 TITLE: Gene Therapy project for Sanfilippo Type C using scAAV9AWARDEE: Phoenix NestBrooklyn, NY AMOUNT IN 2020: $379,539.40DATE: April 2020. 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 2020: $22,000.00Date: June 2020 MPSIII Enzyme Replacement Project TITLE: MPSIII Enzyme Replacement ProjectAwardee: TEGA TherapeuticsSan Diego, CaliforniaAmount in 2020: $200,000.00Date: January 2020. Pre-Clinical work on systemic scAAV9 gene delivery for treating MPSIII TITLE: Pre-Clinical work on systemic scAAV9 gene delivery for treating MPSIIIAWARDEE: Office of Sponsored Research at the University of North CarolinaChapel Hill, NCAMOUNT IN 2020: $108,176.50EIN: 56-6001393DATE: July 2020 Study the effects of Anakinra in Mucopolysaccharidosis III TITLE: Open-Label Pilot Clinical Trial Study the effects of Anakinra in Mucopolysaccharidosis IIIAWARDEE: The Lundquist InstituteTorrance, CAAMOUNT IN 2020: $322,462.50EIN: 95-2138184Date: Payments made in March & October 2020. Transplant MPSIII Human Neural Stem Cells TITLE: Transplant MPSIII human neural stem cells engineered to overexpress and secrete SGSHAwardee: ReMotor TherapeuticsDoral, FLAMOUNT IN 2020: 1,400,500.00Date: Payments made in January & September 2020.