Sanfilippo Childrens Foundation

Please support our 3 day adventure into State forest in NSW Central West Tablelands with nothing more than our backpacks in hope to raise funds and awareness for the Sanfilippo Children's Foundation.  $1 goes a long way for the children and medical research.

We've had much support from Mess Media, Lithgows Bearings, Safari Firearms, Iceberg Refrigeration n Air Conditioning and the Daily Telegraph with exposure and donating the clothing and gear we need to take with us. Now we need you! Please help with as little as $1 or whatever you can afford.
If you would like to learn more or how to get involved, please contact me either by email or direct message me on Instagram @billyvolo

What is Sanfilippo Syndrome?
 
Sanfilippo is a rare genetic condition that causes fatal brain damage . It is referred to as a childhood disease because most patients never reach adulthood (life expectancy 12-20yrs).

Sanfilippo, or MPSIII, is a metabolic disorder.  1 in 70,000 children is born with the inherited condition which is caused by an enzyme deficiency.

 The lack of enzyme prevents the body from going through its natural recycling process, causing cellular malfunction. The disease has four subtypes (A, B, C and D). Each subtype corresponds to a specific deficient enzyme.

Treatments

There is currently no treatment or cure available to families diagnosed with this devastating disease. Yet researchers around the world are working hard to bring therapeutic treatments to life, with several clinical trials already completed or underway. Amongst different therapeutic avenues being explored, gene therapy represents today the most promising avenue for Sanfilippo patients. Research towards a cure for Sanfilippo contributes to the development of treatments for more complex neurological disorders like Alzheimer’s and Parkinson’s diseases.

Help the Sanfilippo Childrens Foundation give affected children the hope of a future!