Wednesday, 27 August 2014

The Ice Bucket Challenge, and ALS/MND - some thoughts and feelings

I have a lot of thoughts and feelings about the Ice Bucket Challenge, you guys, and while (as the lack of updates on this blog clearly indicates) I pop up here only rarely these days, I would quite like to get some of these thoughts and feelings out there. 

As many of you reading this will know, my Dad suffered from Motor Neurone Disease (MND) and specifically the Amyotrophic Lateral Sclerosis (ALS) form of it. He was diagnosed in the spring of 2008, about eight months after his first symptom, and he died in January 2010, less than two years after his diagnosis. Before Dad was diagnosed, my knowledge of MND/ALS extended to, “Isn’t that what Stephen Hawking has?” If pushed, I might also have known about David Niven. But I didn’t really understand what it was, how it affected sufferers, or their families, and I didn’t really understand that it is incurable, and generally fatal within two to five years of onset. I learned much of this by reading Wikipedia once I learned it was possible that this was what was affecting my Dad. Needless to say, it wasn’t exactly a fun read.

Unless you have been directly affected, or know someone who has, it is a disease which is not often talked about or even mentioned. And to be honest, that’s fair enough - it is, compared to the Big Diseases, relatively rare. But because of this, it has low levels of funding and awareness, and without those two things, there is no hope of ever finding a cure.

And now suddenly there is the Ice Bucket Challenge. Every single day of the last month, Twitter and Facebook (and all the other things I don’t know about because I’m too old) have been loaded with videos and requests to donate and information about ALS. And just when it began to tail off in the US, it crossed over to the UK, and MND began to be a part of the conversation. To give you some idea of the impact it had here in the US, the ALS Association’s website says, “As of Wednesday, August 27, The ALS Association has received $94.3 million in donations compared to $2.7 million during the same time period last year (July 29 to August 27). These donations have come from existing donors and 2.1 million new donors.”

That’s just one ALS charity. It’s an astonishing boost in donations and in awareness for a disease that seldom, if ever, gets this kind of attention. From a personal perspective, every time someone I know, or know of, chucks a bucket of ice water over themselves and namechecks ALS or MND, it gives me a huge boost – that’s one more person who knows about ALS now. Even if they don’t donate money to the charity now, they’re more likely to sign a petition for more funding, or sponsor someone to do a walk or climb a mountain in support of the charity. And if they ever have the misfortune to know a sufferer, or a family member of a sufferer, they’ll understand what that means and be able to offer the support that those people desperately need.

You have seen a ton of these videos by now. You are probably bored of seeing them. But, this will all peter out soon enough, as social media viral whatevers generally do. Other charities are being donated to as well (which, incidentally, I completely support – charitable giving is a personal choice, and there’s no such thing as a wrong charity to give your money to (actually that’s probably not literally true, but you know what I mean)) and those charities might for the next phase of the challenge become more high profile. 

But for those of us for whom ALS/MND is or has been a personal reality, this month has been an utter joy, a moment in the sun, lightning in a bottle. Thank you so much for talking about it. And here are some links, in case you want to know more, or want to donate, or just want to watch some videos (both fun and sad):

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