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Partnering for hope in rare childhood diseases
It’s the diagnosis no parent wants to receive – a rare and debilitating neurodegenerative disease without a known treatment and with no known cure.
For Australian parents Golden and Chris Whitrod, learning their 14-month-old daughter Tallulah has been diagnosed with SPG56 was devastating.
Instead of accepting that nothing could be done, the Whitrod family searched the globe to find researchers who could help.
In 2021, they began to support the work of AIBN’s Wolvetang Group where scientists, such as Dr Hannah Leeson, are using brain and spinal cord organoids to better understand SPG56 and explore potential therapeutics.
Their support was pivotal, enabling early research that has since attracted investment from the Australian Government’s Medical Research Future Fund. This research uncovered an investigational new drug now set to be included in an upcoming clinical trial at Gazi University Hospital in Turkiye.
“Four years of tireless work by Wolvetang’s team and global collaborators has turned what was once ‘untreatable’ into real hope. That hope is not only for our daughter Tallulah, the catalyst for this mission, but for children everywhere. These vital funds are building a framework to treat other rare diseases. Research like this gives families hope beyond measure – hope backed by science, and our best chance to give Tallulah the childhood she deserves.” – Golden Whitrod
Calm before the (Cytokine) storm
A chance news story about the use of gold in medical research has grown into a powerful partnership that is bringing cutting-edge health tools closer to real-world use.
At the heart of this work is the Immunostorm Chip – a tiny device that identifies which cancer and COVID-19 patients are at risk of a potentially lethal ‘cytokine storm’. Gold is the essential ingredient, which made Evolution Mining, a leading, premier global gold company, a natural partner.
With Evolution’s support, early career researchers in AIBN’s Trau Group have been able to push this technology even further. Researchers are now exploring more sensitive cancer tests, and the possibility of chips that could one day make personalised medicines and vaccines on demand.
“Evolution is proud of how this project has grown over the years – in regards to both our relationship with UQ, and to the multiple applications of the technology and gold-based products.” – Charmaine Saltner, Group Manager Indigenous Relations and Community Partnerships, Evolution Mining