Ever wanted to achieve great things while doing nothing for
a day? Well, I hope you took your opportunity yesterday!
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 Her first YA novel Integrate was awarded the 2013 CALEB Prize for unpublished manuscript.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 contact@adelejonesauthor.com
Thanks Adele for an interesting post. I've just googled Mitochondrial disease - and wow - sounds like a real nasty disease doesn't it? So glad you are raising awareness of it through your writing. I've loved reading the adventures of Blaine Colton and look forward to reading the final book of the trilogy as soon as I get my hands on it. I've been made aware about Mitochondrial disease lately by taking a supplement for fibromyalgia which is also used for Mito - Co Q10. Would be wonderful if research would uncover more help mito sufferers. Meanwhile, thank you for opening our eyes to it. And congratulations on book 3!
ReplyDeleteThanks, Anusha. Yes, mito is a disease that can have devastating outcomes. When I first started reading about mito, I began to appreciate a friend's statement, 'It's complicated,' when describing the variety of symptoms that can be experienced, depending on the type of mito present. Certainly an important to cause for raising awareness. (And who doesn't love a sleep in?! :) )
DeleteA great idea for a fundraiser. Love your books Adele & think it's great you are raising awareness of a serious genetic disease while entertaining and enthralling us with your stories. Like Anusha - I can't wait to get my copy of Activate and the thrilling finish to the trilogy (especially after Mazzy's review).
ReplyDeleteIsn't it just? Love the idea of 'staying in bed', especially given devastating fatigue is a key symptom of the disease. So pleased you've enjoyed Blaine's journey thus far, Jeanette. The balance between fiction and fact for the novels has been an interesting line to draw, especially Blaine's condition and related symptoms. Hopefully, even in a fictional context, it makes people curious enough to explore the issue for themselves.
DeleteI'm not usually into "special days" like this - there are too many. But Stay in Bed day? I can relate to that ... and I missed. Next year, maybe :)
ReplyDeleteThanks for the explanation of mito. While I've read Integrate and Replicate (and Activate is on my to-read pile), I hadn't realised the disease was as common as it is.
I'm with you, Iola. Who could argue with a 'special day' that involves sleeping, right? :)
DeleteYes, it surprised me too how common mito is, and as further developments are made, links to other diseases are becoming apparent. I still find it amazing how two people with the same type can experience completely different symptoms. It really is a complicated illness.
Pleased to hear Activate's on the TBR list. Interesting to hear your thoughts on the final instalment. :)
Thanks, Adele. You have both educated us and given us something to aim for next year ��. Seriously - that sounds like an awful disease. I hope scientists find a cure soon.
ReplyDeletePleased to help increase awareness, Sue. :) There's so to mito, once you start digging into it. Wouldn't it be nice if there was a custom-made cure, like Blaine's? There have certainly been significant advances recently, but some that tingle my ethical antennae too. It'll be interesting to see where things are at ten years down the track.
DeleteThanks for that Adele. I love the way that your books show the ins and outs of what it's like to have hope in the face of a life-threatening disease. I'd never heard of mito until your books came along. It's wonderful to be able to educate people and create awareness, while also telling a great story that entertains. I'm sure people will be able to relate to it better through your books than if they were just reading articles about it. Hope the fundraiser and your books are both a huge success :)
ReplyDeleteThanks, Nola. I too find it remarkable how there can be so little awareness of such a common illness. I'd heard of mito many years back, but until I started asking about the illness of a family friend (the catalyst to my interest), I never realised what exactly mito entailed.
DeleteI hope that even through a fictional medium and extensions of reality, people gain more awareness of the illness and look up the facts for them self. The generosity of people who donate at the book launches is wonderful. Every dollar counts.
Thanks Adele for a great post. I, too, had never heard of Mito until reading your books. I'm hanging out for the third instalment of the trilogy as well.
ReplyDeleteThat's encouraging to know your awareness of mito was brought about through the books, Lesley. Hope you enjoy the conclusion of the trilogy when you get your hands on a copy. :) Thank you.
DeleteGood job on raising awareness. And sleeping in sounds like a good idea too. Looking forward to part three of the trilogy.
ReplyDeleteThanks, Meredith. I can't imagine many people arguing with sleeping as a fundraiser. :)
DeleteHi Adele great post!
ReplyDeleteBefore I moved we went to the same church as the family that started this fundraiser - their daughter being the sufferer of the awful disease.
Great opportunity to illuminate so many things through writing 'stories'.