There is the ALS, how about Ichthyosis?
By now you'll have seen social media awash with people pouring buckets of water over their heads. Great idea, it's hot, it's a good cool down, but it's also for a good reason. Lou Gehrig's disease otherwise known as ALS or Motor Neurone Disease is a degenerative condition in which patients gradually lose the ability to control their body.
In the case of Morrie, in Mitch Albom's best selling book, Tuesdays with Morrie, Morrie is diagnosed with ALS after collapsing at a dance hall. He first loses the ability to use his feet and over an agonising period of time, his body literally shuts down and eventually and sadly, he passes away. Another example of ALS lies with British physicist Stephen Hawking who has a form of ALS.
The idea of dousing a bucket of ice water was a way to encourage others to donate money towards finding a cure so that ALS doesn't have to have such a impact on lives. That people don't have to suffer like Morrie did. When I first saw what was being done, I was a bit wary of the fact that tons of water was being wasted, but if it's helping others find a cute, let's do it! Let's be honest, it IS a novel way of fundraising I reckon. And I did it too!
However with all things relating to research of chronic illnesses and genetic conditions, my heart skips a beat (maybe 10) because despite a small legion of efforts, I know it'll be a very long time till some wise chap finds a cure for Ichthyosis, be it Lamellar or Harlequin. I do get slightly sad when I see tons of efforts being raised for more common illnesses which is fair enough because that's important too. But sometimes I imagine people with Ichthyosis must be scrambling for ideas on fundraising towards a cure. This may also be the case for others with lesser known conditions.
I am in no position to assume (but I will) but given the activity on Facebook, at least on mine, I have a huge number of friends unaffected by Ichthyosis but knows someone who deals with it, parent, carer or sufferer. The ALS challenge got me thinking, if this much awareness has been raised about ALS, spreading awareness like wildfire, then I'm sure us Ichthyosis people can come up with something to raise awareness not just within our legion, but the general world as well.
Though the ice bucket challenge was fun (and cooled our bodies right down), it would be no longer be an original concept in which people want to raise money and awareness. I need to have a think and a long one but in honour of difference in appearances. I'll keep you posted on ideas...remind me soon, I'll forget!
I'm trying to work out how to attatch the video of me dunking a bucket of water over my head...I'll upload it to my Instagram page.
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