Cure Sanfilippo Foundation Elizas Story

“Glenn ONeill and Cara ONeill MD FAAP are husband and wife and only get one vote together.”

“All Board Members have reviewed the Form 990.”

“Conflicts of interest are reviewed during Board Meetings”

“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.”

“The Employment Committee reviewed multiple 990's and other comparable benchmarks, to establish reasonable compensation for Chief Science Officer.”

“The organization's governing documents, policies, and financial statements are available upon request. The Form 990 is uploaded on the Guidestar website.”

“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”

“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”

“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”

“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.”

“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”

“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”

“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”

“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”

“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”

“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”

“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”