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Feature: Stephen Hawking portrait forms part of Motor Neurone Disease Association's Incurable Optimism exhibit at House of Commons as Radnage resident praised by charity CEO
EARLIER this month The Motor Neurone Disease Association invited the Bucks Free Press to a special exhibition at The House of Commons.
The charity explained more about the devastating condition, the inspiration behind its current campaign and the importance of Radnage resident Steven Smith, one of its major fundraisers.
STEPHEN Hawking, the eminent scientist, is almost certainly the most famous face of Motor Neurone Disease.
The renowned physicist has communicated the wonders of physics and the universe on many television documentaries thanks to his computer aided voice, after the illness left him unable to speak by himself.
But the experience of Hawking, 69, is not typical in the sense that he has been living with it for virtually his entire adult life.
Most people die within a year or two of the onset of symptoms.
Hawking is among the portraits created by artist and sufferer Patrick Joyce, who labels him a hero, for the charity's Incurable Optimism exhibition at the House of Commons in Westminster this Winter.
Another man featured in the art work was Roy Redford, 83, from Pulborough, who began running when he was 60.
Incredibly, he has now completed 24 marathons for the association, raising £60,000 and has finished 44 marathons in total pulling in £190,000 for all his charities.
Steven Smith, 48, of City Road, Radnage, High Wycombe, said Mr Pedford had been his own inspiration.
Former Radnage Parish Councillor Mr Smith has also run numerous half and full marathons supporting the association in memory of mum Genifer.
Although Mr Smith, who is closing in on his £100,000 goal, is yet to match Mr Pedford's list of races run, his efforts were hailed as remarkable.
The charity's Chief Executive Kirstine Knox said: “It's easy to say it about Steve, he has been the most inspiring and amazing supporter of people with MND and the association.
“It's absolutely phenomenal and for a relatively small charity like ours what he’s done makes a huge impact on what we can do and we are enormously grateful to him. It's not just the money but the awareness.”
Mr Smith said he had been on a mission since his mother passed away in the 1990s.
“It's a horrendous disease, you watch people disintegrate in front of you,” he explained.
"They lose the ability to speak and you are basically a corpse with your mind all still there.
“It's a particularly devastating illness, you know what's coming, but there's no hope or treatment.”
Recently, the disease has featured more prominently in the news, with a number of high profile cases of sufferers seeking to end their own life.
Many of those who have travelled to the Dignitas clinic in Switzerland, which helps terminally ill patients end their lives, have been Motor Neurone sufferers.
This was featured in the recent BBC documentary by ex-BFP reporter Sir Terry Pratchett.
The MND association's vice-chair Jean Waters, another sufferer told the BFP: “When you initially are diagnosed with this completely untreatable disease and told you're only going to be living a couple of years and are going to be losing the use of both arms and legs and swallowing on the way, it is a frightening scenario.”
Said she was one of the luckier ones in that her disease progression is slow.
“The only reason its a rare disease is because most people die of it so quickly.
“So actually, you should have as many people in the population as Multiple Sclerosis (another neurological condition) for example, but there's at least 100,000 more living with that.”
The disease is still relatively lacking in profile and the Incurable Optimism campaign aims to rectify that.
Unfortunately, Mr Joyce will not be able to complete his target of finishing 100 portraits after the disease took away his ability to paint.
But the campaign carries on with a new figurehead - father-of-two and school teacher Alastair Banks.
He is taking up the Incurable Optimism baton through music, recording an album for the campaign.
“We in the MND like to show that we are not giving in to this horrible disease, we are living with it, not dieing from it,” he told guests at the Parliament event.
“We endeavour to live our lives as fully as we can despite the obvious disabilities it causes.”
Those who attended also heard talks from leading expert Professor Colin Blakemore, who declared that the disease would be beaten and said the two incurable optimists have shown a 'very special effort'.
Former Health Secretary and now Shadow Health Secretary Andy Burnham was another speaker.
He learnt about the disease through his friend and former MP Kevin Hughes, another sufferer.
“Kevin's story really got through to me and I saw the terrible effects of this incurable disease and what it does to people who are living with it,” he said, as he pledged further support to the charity's work.
Numerous politicians attended the event including Sir George Young MP and Lord Triesman.
The exhibition has finished but the charity's campaign goes on.
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