Ever wanted to achieve great things while doing nothing for a day? Well, I hope you took your opportunity yesterday!
If you didn’t realise, September 25th was Australia’s ‘Stay in Bed Day’—and not just for any reason. ‘Stay in Bed Day’ is an initiative to raise awareness and fundraise for mitochondrial disease (mito), which is a disease that impacts the mitochondria i.e. powerhouses of our cells. You can find out more on the Australian Mitochondrial Disease Foundation (AMDF) website.
You might be wondering why I’m telling you this. (If you’ve read my books, you’ll already know. :-) ) You see, Blaine Colton, the main protagonist of my young adult trilogy is a mito survivor. And Activate, the final novel in this series, is being released November 1 by Rhiza Press! Blaine credits his survival of this otherwise incurable genetic disorder, to revolutionary gene therapy.
Sounds great, right? But things are seldom as simple as they first appear.
Firstly, my stories are fiction. Although these technical thrillers are based on a scientific framework, extrapolating proposed approaches that could offer a potential treatment for mito sufferers, they are still extensions of reality. This means despite significant advances in the understanding of this disease in the real world, a cure for serious cases, like Blaine’s, is a) invented and b) not likely to be available anytime soon.Secondly, just like the ethical tangles that thread through my novels, there can be as equally challenging ethical boundaries to navigate for achieving real life cures through appropriate processes that uphold the value of human life at all stages. This takes some pretty big (and long term) thinking to navigate, especially where genetic manipulations are involved, and mito is a more prevalent disease than you might expect.
‘One in 200 people may carry the genetic changes that can cause mito, with one in 5000 people suffering from a life-threatening form, making it the second most commonly diagnosed, serious genetic disease after cystic fibrosis.’ (Stay In Bed Day, 2016)
This is where ‘Stay in Bed Day’ is working hard by putting heads on pillows to raise money for further research. If you missed your chance to sleep on it (ha!) it’s never too late to donate, which we’ve done through the launches for both Integrate and Replicate. You could also get on board for next year. And don’t forget you’ll need a good book to read while you’re snoozing for the cause. There are some topical ones I can recommend. ;-)
Adele Jones is an award winning Queensland author. She writes young adult and historical novels, poems, inspirational non-fiction and fictional short works, along with juggling family responsibilities and a ‘real job’ in the field of science. Her first YA novel Integrate was awarded the 2013 CALEB Prize for unpublished manuscript. Her writing explores issues of social justice, humanity, faith, natural beauty and meaning in life’s journey, and as a speaker she seeks present a practical and encouraging message by drawing on these themes. For more visit www.adelejonesauthor.com or firstname.lastname@example.org