2019-11-15T14:03:07-08:00 2018-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2018-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2019-11-15 true Will Stevens CPA P01208094 8037990555 2018 2020-03-31 21:24:44Z Glenn O'Neill PO Box 6901 Columbia SC 29260 2144141 false 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 8 7 3 80 0 1377712 1748376 0 2943703 31628 112131 278975 4433546 2058979 312878 636976 0 167925 286619 26115 0 140270 92202 229815 599120 1153410 3834426 905569 11442880 10817840 0 11442880 10817840 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 947671 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 947671 true true false false false false false false false false false false false false false 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 true false false false false false false false false true 0 0 false 3 true false false false false false false false false 0 false false false false false false false false false false false false X 8 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 Rachael Best Director 5.00 0.00 X 0 0 0 Faith McAngus Director 5.00 0.00 X 0 0 0 Valerie Byers Director 5.00 0.00 X 0 0 0 Katie Walton Director 5.00 0.00 X 0 0 0 Ben Von Wong Director 5.00 0.00 X 0 0 0 Glenn O'Neill Executive Dir. 50.00 0.00 X 122000 0 8000 Cara O'Neill Chief Science 30.00 0.00 X 75000 0 0 Daniel Fraley Board Chair 5.00 0.00 X 0 0 0 Shelby Leonardy Secretary 5.00 0.00 X 0 0 0 197000 8000 1 false false false 0 69606 1678770 65867 1748376 0 25237 25237 0 0 0 66850 60459 6391 6391 6391 303678 69606 24703 278975 0 0 0 2058979 31628 407050 407050 0 229926 229926 0 205000 133250 30750 41000 0 36888 21282 4256 11350 1574 908 182 484 28436 18484 4265 5687 14721 9569 2208 2944 0 26880 26880 3300 3300 0 0 0 0 30788 21537 9251 15649 15649 713 713 0 2898 2898 23508 18777 4731 0 7836 3842 3994 0 0 0 3134 3134 Events 69554 69554 Program Expense 21624 21624 Printing and Publications 7788 7788 Taxes 5132 5132 11011 6850 4161 1153410 947671 65469 140270 1204896 1221712 3212361 2204422 0 0 0 0 0 0 0 0 7025621 7391706 0 0 0 2 0 11442880 10817840 0 0 X 11442880 10817840 11442880 10817840 11442880 10817840 905569 -1525455 -5154 X X true X false true false X 2379488 582508 636440 1515412 2052054 7165902 0 0 2379488 582508 636440 1515412 2052054 7165902 0 7165902 -33660 -120540 1521 2943703 31628 2822652 0 80 791 871 9989425 0.71730 0.64870 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true East Asia and the Pacific 0 0 Grants See Schedule O 35000 Europe 0 0 Grants See Schedule O 112500 North America 0 0 Grants See Schedule O 35000 182500 182500 Ontario, Canada See Sch O 82426 Check FMV Rome, Italy See Sch O 112500 Wire Trans FMV Victoria, Austr See Sch O 35000 Wire Trans FMV 3 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 Dinner/Auction 2 186724 15750 170974 Golf / Auction Event 83426 24855 58571 1071 3675 7850 2 103134 29001 74133 6840 5267 373284 69606 303678 1071 10515 7850 5267 24703 278975 true LA Biomed 1124 West Carson Street Torrance CA 90502 952138184 70000 0 Application of neural stem cells de Nationwide Childrens Hospita 700 Childrens Drive Columbus OH 43205 311036370 93065 0 Research Preexisting AAV Antibodies Perlara PBC 6000 Shoreline Ct San Francisco CA 94080 100000 0 Creation and high throughput drug s 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 943067788 96985 0 Neural Stem Cells Engineered University of Florida 1600 SW Archer Rd Gainesville FL 32610 596002052 17000 0 Stem Cell Therapy for Sanfilippo 0 6 X 500 65867 FMV false false false 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 and only get one vote together. 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 was established to determine compensation for the Executive Director/President. The Employment Committee is responsible for all hiring decisions, including compensation, benefits, job performance, etc. In 2018, the Employment Committee included Dan Fraley, Shelby Leonardi, Valerie Byers, Faith McAngus, and Katie Walton. The Employment Committee reviewed multiple 990's and other comparable benchmarks, to establish reasonable compensation for Executive Director/President. The Executive Director/President reports to the Employment Committee. Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees The Employment Committee reviewed multiple 990's and other comparable benchmarks, to establish reasonable compensation for Chief Science Officer. 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. Application of neural stem cells derived from patient iPSCs into immun TITLE: Application of neural stem cells derived from patient iPSCs into immunodeficient MPSIII mouse model for the treatment of Sanfilippo SyndromeAwardee: LA Biomed1124 West Carson Street, Torrance, CA 90502EIN: 95-2138184AMOUNT IN 2018: $70,000 check paymentDate: 10/15/2018 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 in vivo imaging of disease pathologyAWARDEE: Monash University710 Blackburn Road, Clayton, Victoria, 3168, AustraliaAMOUNT IN 2018: $35,000 wire transferDATE: 5/4/2018 Creation and high throughput drug screening novel gene-edited model or TITLE: Creation and high throughput drug screening novel gene-edited model organisms (fly and worm) for MPSIIIA and MPSIIIBAwardee: Perlara PBC6000 Shoreline Ct., Suite 204, South San Francisco, CAAMOUNT IN 2018: $100,000.00 wire transferDate: 9/6/2018 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 2018. The Audit for Calendar Year 2017 has been completed. Neural & Mesenchymal Stem Cell Mediated Gene Therapy TITLE: Neural & Mesenchymal Stem Cell Mediated Gene TherapyAwardee: University Of Florida Board of TrusteesPO Box 113001, Gainesville, FL 32611Amount in 2018: $17,000 Check paymentDate: 6/6/2018EIN: 59-6002052 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 2018: $96,985.00EIN: 94-6036494DATE: 7/19/2018 New Therapy NDST1 Mucopolysaccharidosis TITLE: New Therapy NDST1 MucopolysaccharidosisAwardee: Sick Kids Research Institute686 Bay Street, 3rd Floor, Research Operations, Toronto, Ontario, M5G 0A4AMOUNT IN 2018: $82,426.00 Check Payment Date: 11/8/2018 Overcoming Pre-Existing AAV Antibodies for Treating Sanfilippo Syndrom TITLE: Overcoming Pre-Existing AAV Antibodies for Treating Sanfilippo Syndrome Using rAAV9-Mediated Gene TherapyAwardee: The Research Institute at Nationwide Childrens HospitalPO Box 78000, Detroit, MI 48278AMOUNT IN 2018: $93,064.89EIN: 31-6056230Date: 5/4/2018 Repositioning of FDA compounds using cell-based high content screening TITLE: Repositioning of FDA compounds using cell-based high content screening in MPSIIIA cell modelsAWARDEE: Fondazione Telethon6315 Via Della Rosetta N 1 00186, Rome, Italla, ITAMOUNT IN 2018: $30,000 wire transferDATE: 7/3/2018 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 2018: $82,500 wire transferDATE: 1st payment (half) on 4/3/2018 and 2nd payment (half) on 11/30/2018 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 2018: $30,000 check paymentDate: 8/23/2018