[BobbyB]

MEMORIAL FUND SETS UP WEBSITE

09:00 - 24 August 2007



Stephen Pearce's family have launched a website to help raise £50,000 in his name.The 46-year-old from Prestbury died last November of motor neurone disease, just eight weeks after he was diagnosed.

His relatives, friends and work colleagues have already raised £18,000 after setting up the SJP Tribute Fund in February.

They hope to reach £50,000 by the time they hold another big fundraising event in November.


Stephen's niece, Amanda Halliwell, said she hoped the website would boost the fund and help raise awareness of the disease.

She wants people to visit it at www.sjptributefund.co.uk

The 37-year-old said: "There's only three of us really, myself, Stephen's widow Ann and their 18-year-old son Lewis.

"But we've managed to do this with the help of other people. A website designer, for example, has offered his help for free. Everyone helping us has a link with MND.

"We've been so overwhelmed with the support so we've taken the fund on to the next stage.

"The awareness levels of MND are very low, despite it being such a cruel disease."

Motor neurones are the nerve cells along which the brain sends instructions, via electrical impulses, to the muscles. Progressive degeneration leads to weakness and wasting.

Stephen was told he could live for another five years when he was diagnosed but his condition suddenly nose-dived. Just weeks before, he had seemed healthy and was working as head of merchandising for sports firm M &M Direct.

The family's fund was boosted by £1,230 raised at a garden party with the Roy Kirby Jazz Band at the Hilton Puckrup Hall Hotel, near Tewkesbury, last Sunday.

Now the family are staging a corporate dinner and auction at the same hotel on November 3. Bids can be made on the website.

http://www.thisisgloucestershire.co....pNodeId=231778

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'Motor Neurone Disease has torn my family apart.'
By Nicola Fifield
Comment

Michael, Mark, aged ten, Daniel, 14, and Sue
HER family has been ravaged by a killer disease that took the lives of both her mother and father.

But now this devastated daughter has managed to get her life back on track by setting up a tribute fund in their names.

Sue Craven, of Gate Helmsley, near York, said it was like torture to see her own mother, Sylvia Dunton, becoming crippled by Motor Neurone Disease (MND).

She died in April this year after a two-year battle with the illness. Within four weeks of her death, the disease took another victim, when Sue's shattered father, Robert, lost the will to live.

Sue, who is 47, said: "He was completely devastated by what had happened to my mum, and he literally lost the will to live. He stopped eating and that was it.

"MND has torn my family apart. My whole world fell to pieces after the death of my parents and every day became a battle."

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But the mother-of-two eventually found a way to channel her grief when she set up a tribute fund in her parents' names, with all the money going to the MND Association.

Her first fundraiser was held in June, when a team of 25 hikers raised £1,600 by taking part in a sponsored six-mile walk between Gate Helmsley and Stockton-on-the-Forest.

Sue, who works at the Central Science Laboratory at Sand Hutton, said: "I know it's not going to bring my parents back, but it makes me feel like I'm doing something to help. MND is a horrendous disease. I wouldn't wish it on my own worst enemy. They don't know the cause, so there is no cure and the average life expectancy is two to five years. It affects every muscle in the body, so by the end you can't even speak or swallow."

Sylvia, who lived in Leicestershire and died at the age of 69, had eight carers and two Marie Curie nurses per day to look after her just before her death.

Sue said: "My mum was a very fit and active lady right through her life. She lived life to the full and never let anything stop her.

"Even when she was first diagnosed with the disease she didn't give in. But eventually she couldn't even do simple things like turning a door handle. It was absolutely horrendous. People say the good thing about it is that the brain stays active, but I think it would be easier if you were away with the fairies."

Anybody who would like to make a donation to the MND Association can phone Sue on 01759 372466.

What is MND?


A neurodegenerative disease that attacks the upper and lower motor neurones, leading to the weakness and wasting of muscles
Symptoms include loss of mobility in the limbs, muscle cramps and spasms, bowel problems, and difficulties with breathing and swallowing
It can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70
Men are affected approximately twice as often as women
About two people in every 100,000 will be diagnosed with the illness every year
The MND Association provides support for people suffering with MND and their families.

http://www.yorkpress.co.uk/news/york...ily_apart_.php