Posted by: mads04 | August 21, 2014

The ALS/MND ice bucket challenge

If you follow me on twitter you will have noticed I often put #Global killer as a hashtag when talking about Mnd/ALS. I put that because over the last few days you might have noticed the ALS/MND Ice bucket challenge which is raising funds and awareness around the world. As someone living with this illness and also a massive campaigner I’m absolutely made up because since I was diagnosed I’ve jumped out of planes, written and performed songs, nearly completed 100 miles doing several marathons, helped organise football tournaments, released albums, completed two 30 mile bike rides, appeared on multiple TV and radio stations, fronted an MND and football campaign an all I had to do was throw a fuckin bucket of ice over my head!!! Fuckin sound!!

The ALS/MND ice bucket challenge has become a global phenomenon and was started by an ALS/MND warrior called Peter Frates In America. It has raised over $41 million and it’s increasing by the minute. Just to try and compare it the whole of last year the ALS Association received around $1.3 million, they’ve made $41 million in the last month. This to me personally makes me want to cry with tears of joy. Since the day I was diagnosed all I’ve ever wanted to achieve was to raise awareness for MND and hope that one day a cure will be found. Personally I’m not arsed about the money because as it’s proving raise the awareness the money will follow.

Living with Mnd is a lot easier than trying to raise awareness, that might sound a bit strange but honestly I’ve been banging mine and other heads against a brick wall for nearly 4 years now, there’s people who’ve been doing it for longer than me. I’ve put my body on the line, my health at risk and other peoples ears at risk with my singing!! I’ve tweeted like mad. I’ve had arguments and got frustrated by the way we all raise awareness and I’ve probably pissed some people off but all I’ve ever wanted is for this horrific disease recognised. Finally, thanks to my fellow ALS/MND warrior in America the Mnd/ALS community around the world are getting some well deserved coverage.

I haven’t always seen eye to eye with the MND Association but I’m glad they are getting recognised for the work they do. There’s been talk in the media about other charities hijacking the ice bucket challenge, mainly the Macmillan cancer charity, listen charities are ran like business and like all business it’s competitive. So we have to expect that if something works for 1 business it might just work for another. The Macmillan charity have made around £250,000 off the ice bucket challenge were as MNDA have made about £50,000. Cancer has a much bigger audience because of the amount of people it affects and I’m made up for them. I seen what cancer did to my lovely mum and I know what great work they do.
There wouldn’t have been any confusion if MND/ALS had one name, something myself and others have been going on about since day 1. Social media has exploded because of the IBC and I’d like to thank everyone who’s done it, which by the looks of it is the whole fuckin planet!!

I’ve watched this illness kill people I’ve met and class as friends, all the time watching them deteriorate knowing that this is my future. Imagine knowing that you will end up in a wheelchair unable to move, talk, hug your kids and finally die in that position. That’s the reality of MND /ALS. Sometimes being positive all the time doesn’t work because it’s tough to get a message across with a smile it’s easy when your crying but it’s even easier with a bucket of ice!!

I’d like to thank Brendan Rodgers for mentioning me in his IBC, that was a really nice touch.

Remember, to donate to the MNDA text iced55 ( £ ) to 70070

Watching all the videos has brought a smile to every Mnd/ALS warrior worldwide and that’s worth more than any money donated…. Trust me.

Keep smiling and remember to donate after your IBC it’s not just about pointy nipples and shrunken nuts..

To be continued





  1. I am also very please the IBC is raising awareness for MND and am also aware that the whole ALS/MND confusion is not a good thing. My son (now 16) was 6 when he lost his dad and was not aware that ALS was the same thing (he sort of understood but not fully). He was confused as have others been that when they mention MND/ALS and intended to donate to MND that the number they are using (forwarded by friends!) is actually for Macmillan. My son naively thought it would all end up in one big fund!!! The IBC that really touched me was the ALS Unsensored and Sexy one, mainly because it show something of how devastating MND can be. The MNDA seems in my experience to spend too much time promoting the ‘positive’ and even when my husband was ill he only fully had someone tell him (he had researched but not until you are directly told do you really start to understand!) just weeks before he died. It was under 3 years from first symptom and 22 months from diagnosis that he died. The interview on This Morning seemed to concentrate on what the poor lady was trying to do before she died but not so much on the reality of daily life and having to be cared for (washed, dressed, fed, toileted…. ).

  2. […] Also mark Maddox had some good comments on this mark […]

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