2020-11-16T04:58:22-08:00 2019-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2019-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2020-11-13 true Will Stevens CPA P01208094 8037990555 2019 2021-01-29 14:40:06Z Glenn O'Neill PO Box 6901 Columbia SC 29260 1394497 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 4 100 0 1748376 1211874 0 31628 127390 278975 6534 2058979 1345798 636976 676206 0 286619 401485 0 120939 229815 186207 1153410 1263898 905569 81900 10817840 10749584 27553 10817840 10722031 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 1057881 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 1057881 true true false false false false false false false false false false false false true false false 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 0 0 false 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 122000 0 8000 Katie Walton Vice President 40.00 0.00 X 78846 0 0 Cara O'Neill Chief Science 25.00 0.00 X 75000 0 0 Daniel Fraley Board Chair 5.00 0.00 X X 0 0 0 Rachel Best Director 5.00 0.00 X 0 0 0 Faith McAngus Director 5.00 0.00 X 0 0 0 Shelby Leonardi Secretary 5.00 0.00 X X 0 0 0 Valerie Byers Director 5.00 0.00 X 0 0 0 Ben Von Wong Director 5.00 0.00 X 0 0 0 Adam Shaywitz Director 5.00 0.00 X 0 0 0 275846 8000 1 false false false 0 215875 995999 1783 1211874 0 127390 127390 0 0 0 0 44750 215875 48699 -3949 0 0 Billable Expenditure Rev 10483 10483 10483 1345798 137873 571956 571956 0 104250 104250 0 283846 184500 42577 56769 0 54337 35319 8151 10867 2407 1389 279 739 32479 21111 4872 6496 28416 18471 4262 5683 0 22995 22995 15275 15275 0 0 0 0 29822 20861 8961 9075 9075 141 141 0 11375 11375 23183 18518 4665 0 5165 2532 2633 0 0 0 2944 2944 Events 31424 31424 Web Service 11379 11379 Printing and Publications 8294 8294 Taxes 4429 4429 10706 6730 3976 1263898 1045031 97928 120939 1221712 480676 2435021 2992715 0 0 0 0 0 0 0 0 7161107 7276193 0 0 0 0 10817840 10749584 27553 0 27553 X 10817840 10722031 10817840 10722031 10817840 10749584 81900 -148075 -7492 -22142 X true X false true false X 582508 636440 1515412 2052054 1256624 6043038 0 0 582508 636440 1515412 2052054 1256624 6043038 0 6043038 -120540 1521 2943703 31628 127390 2983702 0 80 791 871 9027611 10483 0.66940 0.71730 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Accrued payroll 14722 Credit Card Balances 12831 27553 true Europe 0 0 Grants See Schedule O 104250 104250 104250 Rome, Italy See Sch O 104250 Wire Trans FMV 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 Golf / Auction Event 96985 81595 15390 10387 Sale Event Fundraiser 30000 30000 9 133640 104280 29360 29636 1110 7566 260625 215875 44750 40023 1110 7566 48699 -3949 true Lundquist Institute 1124 West Carson Street Torrance CA 90502 952138184 70000 0 Open-label pilot study Research Triangle Institute PO Box 900002 Raleigh NC 27675 560686338 30761 0 Caregiver Preference Study The Pennsylvania State Univer 227 West Beaver Ave State College PA 16801 246000376 30000 0 Role of Autophagy in Mucopolysaccha The Regents of University of 1995 University Avenue Berkeley CA 94704 946036494 47795 0 Neural Stem Cells Engineered UNC - Chapel Hill 104 Airport Dr 2200 Chapel Hill NC 27599 591711424 300000 0 Treating MPS University of North Carolina 104 Airport Dr 2200 Chapel Hill NC 27599 566001393 93400 0 Facilitate and enhance the CNS entr 0 6 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 InstitutePost Office Box 900002Raleigh, NC 27675-9000AMOUNT IN 2019: $64,011.15 in check paymentsEIN: 56-0686338DATE: February 1, 2018 - March 31, 2020 Facilitate and enhance the CNS entry of systemically delivered AAV vec TITLE: Facilitate and enhance the CNS entry of systemically delivered AAV vectors for treating MPSIIIA and MPSIIIB in miceAwardee: University of North Carolina - Chapel Hill104 Airport Dr. #2200, Chapel Hill, NC 27599AMOUNT IN 2019: $70,000.00 in check paymentEIN: 56-6001393Date: 12/11/2019 Form 990, Part IV, Line 12a - Audited Financial Statements As of the time of filing this 990, Cure Sanfilippo Foundation is undergoing an Audit for Calendar Year 2019. The Audit for Calendar Year 2018 has been completed. Grant Detail The following grants were provided: Neural Stem Cells Engineered to Produce Sulfamidase for treatment of S TITLE: Neural Stem Cells Engineered to Produce Sulfamidase for treatment of Sanfilippo SyndromeAWARDEE: The Regents of the University of California AMOUNT IN 2019: $47,794.50 check paymentEIN: 94-6036494DATE: 12/20/2019 New Therpeutic Strategies for the treatment of behavioral symptoms in TITLE: New Therpeutic Strategies for the treatment of behavioral symptoms in MPSIIIAAwardee: Fondazione Telethon (TIGEM)6315 Via Della Rosetta N 00186, Rome Italia, ITAMOUNT IN 2019: $33,000.00Date: May 2019 Open-Label Pilot Study of the effects of Anakinra in MPS III TITLE: Open-Label Pilot Study of the effects of Anakinra in MPS IIIAwardee: The Lundquist Institute1124 West Carson Street, Torrance, CA 90502EIN: 95-2138184AMOUNT IN 2019: $70,000 in check paymentDate: 12/17/2019 Repositioning of FDA compounds using cell-based high content screening TITLE: Repurposing FDA drugs for the treatment of MucopolysaccharidosisAWARDEE: Fondazione Telethon6315 Via Della Rosetta N 1 00186, Rome, Italla, ITAMOUNT IN 2019: $30,000 wire transferDATE: 12/13/2019 Systemic scAAV9-mCMV-hsGSH gene delivery for treating MPS IIIA TITLE: Systemic scAAV9-mCMV-hsGSH gene delivery for treating MPS IIIAAwardee: UNC - Chapel HillAmount in 2019: $300,000 wire transferDate: 9/13/2019EIN: 59-1711424 Targeting amyloid aggregation as a new therapeutic approach to treat TITLE: Targeting amyloid aggregation as a new therapeutic approach to treat the CNS in Sanfilippo SyndromeAWARDEE: Fondazione Telethon6315 Via Della Rosetta N 1 00186, Rome, Italla, ITAMOUNT IN 2019: $41,250 wire transferDATE: June 2019 The Role of Autophagy in Mucopolysaccharidoses and Its potential as a TITLE: The Role of Autophagy in Mucopolysaccharidoses and Its potential as a Therapeutic TargetAwardee: The Pennsylvania State University227 West Beaver Ave., Suite 401, State College, PA 16801EIN: 24-6000376AMOUNT IN 2019: $30,000 Date: 12/3/2019