2018-11-15T11:39:57-08:00 2017-12-31 570957419 The Hobbs Group PA 1704 Laurel Street Columbia SC 29201 990 2017-01-01 464322131 Cure Sanfilippo Foundation CURE 8034130525 PO Box 6901 Columbia SC 29260 Glenn O'Neill President 2018-11-15 true Will Stevens CPA P01208094 8037990555 2017 2019-02-21 02:37:17Z Glenn O'Neill PO Box 6901 Columbia SC 29260 4809115 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 7 7 1 75 0 538854 1377712 0 1521 2943703 61385 112131 601760 4433546 152638 312878 0 49854 167925 8183 26115 87280 84487 92202 295162 599120 306598 3834426 4511454 11442880 0 4511454 11442880 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome false false 472488 To advocate for and fund research directed towards a cure or treatment options for patients with Sanfilippo Syndrome 472488 true true false false false false false false false false false false false false false false false false false false false true false true 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 1 true false false false false false false false false 0 false false false false false false false false false false X 7 7 true false false false false false false true false false false true true true true true true true false false SC X Glenn O'Neill 8034130525 5 Calendar Court Columbia SC 29206 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 Glenn O'Neill Executive Dir. 50.00 0.00 X 122000 0 8000 Cara O'Neill Scientific Dir 30.00 0.00 X 0 0 0 Daniel Fraley Treasurer 5.00 0.00 X 0 0 0 Shelby Leonardi Secretary 5.00 0.00 X 0 0 0 122000 8000 1 false false false 0 30710 1347002 70324 1377712 0 27406 27406 0 0 0 3266297 350000 2916297 2916297 2916297 137700 30710 25569 112131 0 0 0 4433546 2943703 170452 170452 0 142426 142426 0 130000 75000 15000 40000 0 0 2684 1548 310 826 25470 14694 2939 7837 9771 9771 901 901 12669 12669 0 0 26115 26115 0 0 25732 18000 7732 0 5847 5847 0 0 18780 15000 3780 0 1224 600 624 0 0 0 3005 3005 Printing and Publications 10770 6000 4770 Web Service 9558 9558 Bank Fees 1752 1752 Membership Dues 694 694 1270 1270 599120 472488 39352 87280 1804363 1204896 3212361 0 0 0 0 0 0 0 0 2707091 7025621 0 0 0 2 4511454 11442880 0 0 X 4511454 11442880 4511454 11442880 4511454 11442880 3834426 3097000 X true X false true false X 42449 2379488 582508 636440 1515412 5156297 0 0 42449 2379488 582508 636440 1515412 5156297 0 5156297 -33660 -120540 1521 2943703 2791024 0 80 791 871 7948192 X 0.00000 true Ontario, Canada See Sch O 82426 Check FMV Rome, Italy See Sch O 60000 Wire Trans FMV 2 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 Golf / Auction Event 57505 10760 46745 690 3047 5336 1356 Dinner/Auction 2 37031 7700 29331 9031 2 73874 12250 61624 1435 1375 3299 168410 30710 137700 690 13513 6711 4655 25569 112131 true Nationwide Childrens Hospita 700 Childrens Drive Columbus OH 43205 311036370 97880 0 Research Preexisting AAV Antibodies Nationwide Childrens Hospita 700 Childrent Drive Columbus OH 43205 311036370 18920 0 Intravenuous AAV9 Gene Therapy University of California San 9500 Gilman Drive La Jolla CA 92039 956006144 32595 0 Intranasal Delivery of Sulfamidase University of Florida 1600 SW Archer Rd Gainesville FL 32610 596002052 17000 0 Stem Cell Therapy for Sanfilippo 0 4 X 4 70324 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. The Committee reviewed multiple 990s to establish reasonable compensation for the Executive Director.The Executive Director, Glenn O'Neill, reports to the Board's Employment Committee. This Employment Committee includes Dan Fraley, Shelby Leonardi, Valerie Byers, Faith McAngus, Rachael Best, and Katie Walton. The Employment committee is responsible for all hiring decisions including compensation, benefits, job performance, etc. 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. 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 2017 INTRANASAL DELIVERY OF SULFAMIDASE (EXTENSION) The University of California, San Diego, Department of Cellular and Molecular Medicine, a nonprofit organization at 9500 Gilman Drive, La Jolla CA 92039-0687 received $32,595.00 in 2017 from Cure Sanfilippo Foundation, for an extension study on INTRANASAL DELIVERY OF SULFAMIDASE Investments - Publicly Traded Securities The Foundation made an Investment in ABEONA Therapeutics LLC (ABEONA LLC) of $950,000 in 2014 to fund drug production & toxicology studies for a Gene Therapy Clinical Trial for Sanfilippo Syndrome, and in return received Class A Units. ABEONA LLC merged with a publicly traded company in May of 2015 and for those units, the Foundation received total ABEO stock shares of 542,915. These shares became unrestricted in October 2017. In November 2017, the Foundation sold 200,000 ABEO shares for $3,266,296.57. NEURAL AND MESENCHYMAL STEM CELL MEDIATED GENE THERAPY FOR SANFILIPPO University of Florida, a nonprofit organization at 1600 SW Archer Rd, Gainesville, Florida, 32610, received $17,000.00 in 2017 from Cure Sanfilippo Foundation, for NEURAL AND MESENCHYMAL STEM CELL MEDIATED GENE THERAPY FOR SANFILIPPO SYNDROME TYPE B REPURPOSING OF FDA APPROVED DRUGS FOR THE TREATMENT OF MUCOPOLYSACCHAR Fondazione Telethon, a nonprofit organization at Via Varese 16/B, Rome, Italy 00185, received $60,000.00 in 2017 from Cure Sanfilippo Foundation, for REPURPOSING OF FDA APPROVED DRUGS FOR THE TREATMENT OF MUCOPOLYSACCHARIDOSES (MPSS) RESEARCH STRATEGY FOR PRE-EXISTING AAV (ADENO-ASSOCIATED VIRUS) ANTIBO The Research Institute at Nationwide Childrens Hospital, at 700 Childrens Drive, Columbus, OH 43205 received $97.879.50 in 2017 from Cure Sanfilippo Foundation, for RESEARCH STRATEGY FOR PRE-EXISTING AAV (ADENO-ASSOCIATED VIRUS) ANTIBODIES SUBSTRATE REDUCTION THERAPY FOR SIX MUCOPOLYSACCHARIDOSES The Hospital for Sick Children, a nonprofit at 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada received $82,426.00 in 2017 from Cure Sanfilippo Foundation, for SUBSTRATE REDUCTION THERAPY FOR SIX MUCOPOLYSACCHARIDOSES SUPPORT FOR INTRAVENUOUS AAV9 GENE THERAPY FOR MPSIIIA and MPSIIIB The Research Institute at Nationwide Childrens Hospital, a nonprofit organization at 700 Childrens Drive, Columbus, OH 43205 received $18,919.75 in 2017 from Cure Sanfilippo Foundation, for SUPPORT FOR INTRAVENUOUS AAV9 GENE THERAPY FOR MPSIIIA and MPSIIIB