After Jack was diagnosed with Glioblastoma Multiforme (GBM), one of the most aggressive and deadly brain cancers and he was given just 12 months to live, it became clear that the surgery, radiation, and toxic chemicals he was forced to endure (to shrink the tumour, redress pain/swelling, assist with sleep, etc.) had scrambled his brain and finishing his finance/law degrees was no longer an option, I looked for something that might give him a career path if he survived.
I have been involved in the Tasmanian whisky industry since 2012 and several friends and I decided to establish a whisky company and I asked Jack to become a shareholder, which he gladly agreed. I figured, naively as it turned out, if I could save his life and he was not too physically and mentally compromised by the antediluvian treatments he was forced to endure, we could give him a job in the company (“Elmside”). But Jack died and I sold our shares, although the new owner agreed that the first barrel (distilled in May 2017 [Barrel #1], 100 litres) will be donated to raising money for brain cancer in Jack’s name. That whisky, after six years, has since matured into a delicious whisky.
About the whisky
The whisky was tasted and the perfect ABV agreed by three pioneers of Tasmanian and Australian whisky – Casey Overeem (Overeem Whisky), on the left, Bill Lark (Lark Distillery, the largest whisky producer in Australia), in the middle and Patrick Maguire (Sullivan’s Cove Whisky which won the best whisky in the world in 2019), on the right.
All agreed to cut it at 46%, as that was the sweet spot and after tasting a range from 43% to 50% (https://twitter.com/i/status/1657624119096270848).
“Beautifully balanced, great nose; exciting on the palate; flavours lasting longer”.
We have since produced 205 bottles of whisky which we auctioned to raise money for brain cancer. Lloyds Auctions ran a live auction on 6 September 2024 in Hobart and an online auction, which finished on 20 September.
Bill lark and David Boon both made a video to support the live auction:
Bill Lark, founder of Lark Whisky Distillery.
David Boon, former Australian Test Cricketer
The money raised will be used to acquire access to the ‘Oxford Nanopore minION’, which has been pioneered in Europe and which allows brain tumours to be diagnosed quickly and accurately and thus allowing patients to commence their treatment as soon as possible. There are more than 100 different types of brain tumours and knowing precisely what sort of brain tumour a patient has allows oncologists to determine the most appropriate treatment. Coming to the correct diagnosis involves a pathologist looking at the tumour under the microscope and then running genetic tests to determine the exact type of brain tumour. With current technology, the result takes two weeks to be completed and this can compromise the efficacy of treatment and lead to poorer health outcomes.
Already in use in Norway and the Netherlands, the minION harnesses cutting edge artificial intelligence methods to categorise brain tumours and deliver accurate on-site diagnoses. It is a different way of gene sequencing that reveals a more complete molecular picture of a brain tumour. The ‘Oxford Nanopore minION’ (the only known suitable product on the market) is smaller than a smartphone and uses ‘long read sequencing’ technology.
The vision is to deliver ultra-rapid brain tumour diagnostics as part of routine clinical care to every patient in Australia. The Department of Neuropathology at Royal Prince Alfred Hospital, Sydney, has been at the forefront of brain tumour molecular testing for Australian patients for the past 15 years. It has a long history of providing support, education and expertise to laboratories across the country and is well placed to test and run this new technology as well as help expand access on a national scale.
The cost of acquiring and implementing this new technology is ~$500,000.
With the donations, and the auction proceeds, we have raised ~$50,000 to date, of our $500,000 target.
To assist us to reach this target, Langtons Fine Wines has agreed to conduct a second auction and which is planned for October 2024 or early November. Details will be provided as they are confirmed.
However, for the moment you can still donate:
Donate
Submit a donation of your choice to the Brainstorm SLHD with our MyCause link.