Okay, so before I get going, I am going to put it out there that this may become a slightly ranty post. And, if you’re passionately anti-ice bucket challenge, that’s fine. You’re entitled to your views of course, but so am I to mine, so let’s just agree to disagree.
Firstly I feel I should give you a little background about why this matters so much to me. For those of you who don’t know, my husband Phil lost his Mum to Motor Neurone Disease (MND) not long after we got together. Sadly I didn’t have the chance to get to know Pauline but from others I understand that she was a wonderful, caring person who had so much life and vitality in her. I’d never heard of MND before I got to know Phil and so, when we started seeing each other, I did a little research to try and understand what it was.
What I found out was that it’s a dreadful, incurable disease that is indiscriminate in it’s victims. MND doesn’t care if you’re rich, poor, fat, thin, male or female. It’s talked about as a rare disease but over the last 8 years I’ve been struck by how many people I know have been directly affected by it one way or another. It kind of makes it feel like it’s not actually that rare after all.
Since Pauline was diagnosed Phil and the whole family have done loads of fundraising for the Motor Neurone Disease Association who offer support to sufferers and their families. There is also have a research team working to try and find a cure.
Phil and his cousins took part in the MNDA Cuba Challenge several years ago, running 25km per day for 4 days through different areas of Cuba. One of his cousins has since gone on to run a similar challenge in Morocco and last year took part in the Ring of Fire Ultra Marathon in Anglesey. I ran my first ever 10 mile race for them and Phil plans to run the London Marathon for them too. Over time, MNDA has become the family charity of choice.
And that’s probably why we’ve been so pleased to see the #icebucketchallenge go viral and raise not only an absolute fortune for MNDA but awareness of the condition.
I recently completed my #icebucketchallenge and I have to say, the only thing that surprised me was that I hadn’t been nominated sooner! This is a still from my video but anyone who has seen the video will know how much enjoyment my family derived from pouring icy cold water down my neck! For the environmentally conscious amongst you, we had harvested the water from the kids bath the night before, and before the ice melted, we scooped it up to save for Phil’s challenge when he’s fully recovered from his lurgy!
And now for the rant… You see it’s really irritated me when people have slated the challenge.
For a start, the way the ice water takes your breath away when it hits your neck and very temporarily renders you immobile, might be just a tiny taster how it might feel, all the time, to suffer Motor Neurone Disease. To physically be incapable of movement, I can’t even begin to imagine how awful that must be… Can you?
And then there’s the people jumping on the bandwagon but donating to other charities… What’s that all about? You wouldn’t run the Race for Life and then give your sponsorship to the RSPCA. You wouldn’t hold a Macmillan World’s Biggest Coffee Morning and then donate to your local cat rescue… So why have people started donating to random charities other than the MNDA? (MNDA being the UK charity supporting UK sufferers and their families).
Or those who comment ‘That’s not a challenge’… Well to be honest surely that’s not entirely the point?
You see, the truth of the matter is, whether you pour ice water over your head or not, if the challenge has prompted you to donate and hopefully learn a little more about MND then the challenge has done some good.
If however, you’ve done your challenge and not donated or at the very least, done a little research….. well that’s a different matter altogether!