Confession time: I’m not a social media whizz (but you probably already knew that) and I suck at creating a build-up, even on things I find super exciting.  Like what I’m about to share in this post. So hopefully those that need to see this will see it, and any of you who feel prompted will share it where you can to help spread the word.

We have a good friend who, earlier this year, was diagnosed with an hereditary neuro-degenerative condition called Machado Joseph Disease, or MJD. There is no cure for this condition, and very little awareness, so our friend Bec had a big (and maybe a little crazy) idea to organise the Ten Summits Challenge to do what she could to help towards both.  I’ll be taking part in this with her, in March next year, and doing what I can in the meantime to help raise funds and spread the word (more information regarding the challenge can be found here – www.tensummitschallenge.com).
For the last few months, on the tenth of each month, I’ve been running a silent auction as part of my fundraising efforts. With this month being the final auction, I’ve decided to up the ante a little.
The auction will still be running on the 10th as usual. But if you want to get in quick, or aren’t sure of your bidding prowess, you can pre-purchase a heavily reduced portrait session – so long as payment (in the form of a donation) is made before midday on the 10th of December, when the silent auction goes live.
So far, the highest winning bid has been $450.  Considering this, I’ve decided to offer three (3) more portrait sessions at that value, in addition to the silent auction.  If you’d like to get in with an early bid and pre-purchase one of these sessions simply head over to the fundraising page here www.gofundme.com/ten-summits-narrelle and make a donation of $450.  It will send me a notification, but it would also be great if you could send me an email via the contact link in the menu above to confirm.   And just to clarify – there are only three of these sessions available. If you miss out on one, you will still be able to bid on the silent auction, which goes live at 12pm on the 10th of December, but I cannot guarantee a successful bid – though you may very well get it at an even higher discounted rate. That’s the gamble I guess.   😊

As with the silent auction terms you will be purchasing a 60-90 minute portrait session, including  the high resolution digital files. The sessions will be available for use within the next twelve (12) months. I’ll cover travel costs if you’re in reasonable distance of Melbourne (Australia) but interstate or international travel will need to be covered – but don’t let this put you off – I may have special arrangements in place if you want to message me before purchasing to find out.
The session will be subject to my normal terms and conditions, but don’t worry – there’s nothing scary in there.

As I mentioned, I’d love it if you could share this post with anyone that might be interested, as well having a read of the information below the picture of Bec about MJD, to help understand what this is all about.

Thanks so much, and love to you all.

What is Machado Joseph disease (MJD)?

MJD—also called spinocerebellar ataxia Type 3 (SCA3)—is one of approximately 30 recognized, dominantly inherited forms of ataxia. Ataxia is a general term meaning lack of muscle control or coordination. MJD is characterized by slowly progressive clumsiness in the arms and legs, a staggering lurching gait that can be mistaken for drunkenness, difficulty with speech and swallowing, impaired eye movements sometimes accompanied by double vision or bulging eyes, and lower limb spasticity.

MJD is a progressive disease, meaning that symptoms worsen with time. Life expectancy ranges from the mid-30s for those with the most severe forms of early onset MJD to a nearly normal life expectancy for those with mild, late onset forms. The cause of death for those who die early from the disease is often aspiration pneumonia.

For those wanting a bit more detail:

Machado Joseph Disease (MJD) is a hereditary neuro-degenerative condition. MJD occurs because of a fault on chromosome 14q that results in the production of too much of an abnormal protein known as ‘Ataxin 3’. This protein causes nerve cells to die prematurely in a part of the brain called the cerebellum, along with the brainstem. The damage to the cerebellum and brainstem initially causes muscular weakness and progresses over time to a total lack of voluntary control and very significant permanent physical disability.

MJD is in a ‘family’ of neuro-degenerative diseases that includes Huntington’s Disease and is one of the spino-cerebellar ataxias (SCAs). MJD is also known as SCA3. Many MJD symptoms are very similar to Huntington’s. The most significant difference is that there is limited cognitive deterioration; although recent literature suggests that there may be some high level executive processing deficits, in practical terms people with MJD remain intellectually and emotionally intact throughout the progression of the disease.

There is no cure. But let’s work together towards finding one!

Narrelle  xx


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