Monday, October 31, 2011

There's no cure. I know what my fate is.

There's a bit of a time commitment with these two videos (about 20 minutes in all), and I would suggest you watch this not at work - otherwise you'll be blubbing over your keyboard in view of your colleagues. I'm ordinarily fairly unimpressed with how the commercial networks deal with stories such as these - I find they seek to make you cry in a sort of exploitative kind of way, but you'll see that they've left the ham-fisting well alone here.

Motor Neurone Disease (MND) is an illness that is relatively enigmatic to the medical research community. Funding for important research is grossly inadequate (possibly due to the fact that at 1400 diagnoses in Australia per year, it's not as high profile as other terminal illnesses), and as a result, we are still some way from a cure for this impossibly cruel disease. MND is basically a degeneration of nerves in the body which results in a loss of muscle function. The mind is not affected, meaning sufferers retain all their senses (sight, sound, touch, smell, taste) and their intellect is not impaired in any way. The progression of MND throughout the body varies, however it is terminal, and sufferers usually have between 3-5 years of life from initial diagnosis.

5-10% of cases are familial, with the remaining 90-95% caused by reasons unknown. Only further medical research can identify causes and, hopefully one day, a cure.

My mum's mum - my grandma - died of MND. It attacked her hands and arms first, which was so awful as she was an artist. We have half-complete paintings of hers hanging on the walls at home. Eventually, she was hospitalised for care and she soon passed away. I was only a toddler, so never knew her. Mum lost her mum far too soon. It makes me sad whenever I think about it - and it honestly is a lot.

Each year, I donate to MND research. It takes a little more effort than making a donation for, say breast cancer (which it's basically impossible not to donate to: it has an entire month of fundraising devoted to it, and significant mobilisation in the corporate world behind it with packets of Tim Tams, bottles of water, wash-your-car gloves (I have one) and pink ribbons etc for sale on every street corner it seems). While I wouldn't say not to donate to other charities, or that one form of medical research is more important than another, I suppose we take on a cause as our own - often for fairly personal reasons (or, you simply like the pen).

In my own quiet way (and now blogged about... does that make it quiet? I suppose not), MND is my cause. The 1400 Aussies who are diagnosed each year, and the 12 Australians who die per week of this illness would be most grateful if it became your cause this year, too.

You can donate here.

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