Another Ineffective Awareness campaign?

I will probably be flamed by the MND community for writing this but whenever I read about a new awareness campaign my heart sinks. Actually no, my blood boils. I have been living with MND for 5 years and am now paralysed from the neck down and can't speak or eat. For the first couple of years I was enthusiastic and optomistic about improving awareness and was involved with fundraising and offered myself to be the subject of a campaign. But I have become frustrated with the MNDA's approach to improving awareness. Nothing is changing but they persist with the same ineffective strategies. Ask 100 people if they have heard of any of the previous campaigns or the personalities behind them and I doubt if any have. Asking 10000 will probably not reveal many more, and those that do recall them probably only know of them because of a personal association with the disease. We need a national radio or tv campaign. Yes, it isn't cheap but my efforts (hours of laboriously eyegazing letters) with ideas of raising money specifically to fund such campaigns have been effectively albeit politely deflected. I am convinced that awareness is no better now than 5 years ago and it will be no better in another 5 years if the approach to campaigns doesn't change.

Great Music for a Great Cause

This is the first song an album from a fellow MND sufferer. Have a listen, I really like it. The rest of the album is also pretty good. Follow the link to download it and your £7 will benefit Alistair and the MNDA







http://alistairtheoptimist.bandcamp.com/album/alistair-the-optimist

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Band of Skulls gig

Last night we went to see Band of Skulls at the Roundhouse in Camden. Tracy had heard a couple of tracks on XFM and bought tickets as a joint anniversary present. To say that they are Southampton's answer to The White Stripes or The Raconteurs makes them sound a bit naff but they really are as good.


I wasn't looking forward to the journey across London to a venue we hadn't been to previously but although it took an hour it wasn't too bad. Journey quality is measured in slippage distance within my wheelchair seat. This was about two inches compared to the O2's six. It also helped that after ignoring the satnav's recommendation to go through Kingston's congestion, it actually took a sensible route all the way.

We arrived during the support band's set and Band of Skulls came on around 915. They only have 2 albums' worth of material so we knew it wasn't going to a long gig. They sounded great and although only a three piece band, didn't have to resort to backing tracks or session musicians to sound impressive. The boys enjoyed some of it but we find it frustrating that they aren't more enthusiastic about seeing bands live when they are playing themselves. Maybe taking them to Muse for their debut gig was a mistake!







They played until 1045 although we left before the encore to avoid the crowd. The journey back was going well until we discovered the link road between the westway and shepherds bush was closed. This gave the satnav the perfect opportunity to ignore a simple diversion in preference for a 15 minute tour of the local speed humped, residential roads.

A good night though and I reckon you might here more about this band in the future.



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