OUR Annual UPDATE

Read about our latest achievements and the progress in research in Our Annual Update publications. If you would like a hard copy please don't hesitate to get in touch.

2019-20 Annual Update

Horror Bushfires, Coronavirus, economic turmoil... 2020 began with more than a few challenges. This Annual Update looks back at the many achievements of 2019 and at our ambitious plans for the year ahead despite the disruptions. While some of our events have been postponed our research agenda remains strong.

Amazing progress is being made, and results from several studies are bringing us closer to finding effective treatments. Thank you to our much-valued supporters, donors, sponsors, suppliers, families, volunteers and our incredible network of researchers and clinicians. 

On the cover are twins Jobe and Tate. Jobe (pictured left) is battling Sanfilippo Syndrome.

Download a PDF of 2020 Annual Update

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.

Download a PDF of 2018 Year in Review

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. 

Download a PDF of 2017 Year in Review

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. 

Download a PDF of 2016 Year in Review

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. 

Download a PDF of 2015 Year in Review