2017 Annual Update
2017 was the year we concluded our fourth year of operation. It was a year of celebration, collaboration, advocacy and many a milestone. The Abeona Therapeutics clinical gene therapy trial began on Australian soil, and our fledgling Foundation also took out top gong with the Advocacy Award in the Research Australia annual Health and Medical Research Awards.
On the cover is the Tiefel family whose son Lucas has Sanfilippo.
2018 Annual Update
2018 was the year we turned five. It was an extraordinary year in which we reflected on five years of operation and celebrated significant achievements.
In 2018 the Foundation funded five new research projects aimed at slowing cognitive decline, managing behavioural problems, targeting the immune system and improving the effectiveness of gene and enzyme replacement therapies.
On the cover is young Matilda Page who is battling Sanfilippo Syndrome.
2016 Annual Update
2016 was our Foundation’s third year of operation. It was the year we extended our esteemed Scientific Advisory Board (SAB) to help identify research and clinical trial opportunities and announced five exciting new research projects.
On the cover is Jayda Hannaford who lost her battle to Sanfilippo in 2016 at just nine years of age.
2015 Annual Update
2015 was our second year of operation. We were extremely encouraged in this time of change, expansion, philanthropic gestures and pioneering scientific progress.
Our fledgling Foundation partnered with US biotech Abeona Therapeutics to help deliver a clinical gene therapy trial (our first clinical research program). We also launched a new website, kick-started our family-led Hope for campaigns and even produced a song!
On the cover is Meckenzie Oelofsen, the face of our Hope for Meckenzie campaign.