Danielle and Kelly would like to raise funds to put towards a charity that is looking to speed development into treatments for Sanfilippo syndrome. We both work closely with an inspirational young lady who was diagnosed with SFS at a young age but is coping with the everyday challenges this brings! Sanfilippo syndrome is a rare autosomal recessive lysosomal storage disease. It is caused by a deficiency in one of the enzymes needed to break down the glycosaminoglycan (GAG) heparan sulfate (which is found in the extra-cellular matrix and on cell surface glycoproteins). Affected children generally do not show any signs or symptoms at birth. In early childhood, they begin to develop developmental disability and loss of previously learned skills. In later stages of the disorder, they may develop seizures and movement disorders. Patients with Sanfilippo syndrome usually live into adolescence or early adulthood.