One minute some sports people in the US are filmed pouring buckets of ice water over themselves Then gradually videos appeared of people in the US doing the Ice Bucket Challenge for something called ALS.
Then suddenly one day, Bill Gates is getting in on the act, and the Beckhams and then it's everywhere.
And so then I got intrigued. What was this ALS they kept referring to? So a quick google led me straight to the answer. ALS stands for Amyotrophic Lateral Sclerosis a form of Motor Neurone Disease. Of course - Motor Neurone Disease, MND - I had heard of that, in the UK it is often mentioned in the same sentence as Professor Stephen Hawking.
Then these challenges were being done by friends and soon my timeline was filled with people doing the ice bucket challenge - lots of screaming and water and people being nominated to do the same within 24 hours. Brilliant.
But were they missing the point? I thought this was supposed to be raising awareness for an awful degenerative neuromuscular disease. With all that water around the message was becoming really diluted because in the UK no-one even knows what ALS is. So another big charity with a significant brand recognition started to get in on the act. And why not? There's no copyright on throwing a bucket of ice water over your head for charity.
But the thing is, they already had lots of money and awareness and were able to use some of this money to buy up google ads telling people to text a donation after doing the challenge to them. Why shouldn't they capitalise on a fabulous viral campaign?
But something just did not feel right to me, I wanted to know a bit more about why this ice bucket campaign had started and what it meant to ALS/MND charities.
There are all sorts of stories online about how and why it all started but somewhere, someone decided that they would pledge cash for taking on the challenge, and they knew someone who had ALS. They were aware of how totally devastating this disease is and how little people know and understand, and soon the ball was rolling.
ALS/MND is a neuromuscular disease and I found out that degenerative neuromuscular diseases include Parkinsons, Huntingdons and Spinal Muscular Atrophy. I have friends and family who have been affected by these diseases, who have died from them, who will die from the effects of them. The research taking place into ALS/MND may potentially have an impact on all neuromuscular diseases. Just as the group of syndromes called rasopathies, of which Costello Syndrome is one, benefits from sharing of information and research, so the same holds true in the case of neuromuscular disease.
My eldest son told me he had found out is that the reason that the ice bucket challenge is so significant is that when you are affected by ALS/MND your body shuts down and it feels like you are permanently frozen with ice in your veins - I don't know how true this is but as a metaphor for the slow, painful, creeping death of this disease it's highly relevant.
And at this point I started to get a bit fed up with people putting funny videos of themselves up without thinking about why they were doing it. Sadly it's so easy to do isn't it? Follow the herd on the internet without really thinking why.
There's a term - clicktivism. Click a link, like a post, donate money, feel good, go back to looking at cute cat videos ......
Do we really think about where our money is going and how it is going to be spent? Do we really understand what we are doing when we like a post or sign an online petition ? We click to donate but have we really internalised what it is all about?
Charities rely on donations but they also need awareness to drive those donations and without people really understanding why they do what they do are we going to build a sustainable level of awareness to really change things?
And why throw up a bucket of icy water over your head? If you really want to make a different why not actually do something.
I love this video I was sent recently featuring a "speak it as it is" Australian news commentator
If you have resources - time, money, knowledge why not use those instead? Next week, next month, next year, when all the fuss has blown over and we have moved onto the next viral campaign will you remember ALS/MND? Will you understand that people with neuromuscular diseases need research and awareness? What will you have changed in your life by pouring a bucket of ice water over your head and posting the video on facebook.
Yes, I have been nominated and, no I'm not a spoilsport but it's turned really cold here in the UK and I just don't want to pour a bucket of ice water over my head. I have donated however because I really think there needs to be a far greater awareness of neuromuscular disease. I have also donated to our local hospice, St Raphaels because they provide hands on end of life care for adults in our area.
It's so easy to sit back and be a clicktivist and at the end of the day the charities will benefit but are we just becoming lazy? Isn't it about time we really thought about what we are doing and why. Pouring a bucket of icy water over your head & sending a quick text to donate is easy, keeping it going and making a sustainable difference, that's the harder option.
Next time you are sent a link, just think - are you a clicktivist or are you going to make a difference.
Lecture over, you can go back to googling cute cat videos now.
So far over £2.5million has been raised for the Motor Neurone Disease Association in the UK through texts for the Ice Bucket Challenge. To donate text ICED55 and the amount you wish to donate to 70070.