Irene Beard is not afraid of dying. In fact, she's never been, but especially not since being diagnosed with Motor Neurone Disease (MND) exactly five years ago this month.

It's a disease where dying is an absolute certainty, one that eats away at your motor neurones – the nerve cells through which the brain and spinal cord send instructions - sapping your muscles of their control. Little by little, sufferers stop being able to move around, to talk, to function, and eventually stop being able to breathe.

People like Irene are expected to live just two years with MND, but she's one of the 'incredibly fortunate' ten per cent of sufferers who have defied these odds. The disease is eating away at Irene's muscles, but slower than most, with her main complaint after five years being trouble with her leg movement.

I'm not entirely sure what to expect of an MND sufferer, waiting in the sitting room of Irene's Ladbroke Grove townhouse. But it's definitely not the witty, razor-sharp woman and larger than life personality that enters, immediately pointing out that my blue pen ink better not end up on her beige sofa. Here is a someone who's anything but consumed by her own misfortune.

It was after she got the all-clear from breast cancer, a disease she was diagnosed with in 1999 that Irene noticed her foot wasn't reacting as it should. At the doctor's, she was given the MND diagnosis and admits she was shocked. "You think 'This isn't happening to me. I'm active, running around, skiing, and riding'. And you realise you're not going to be able to do that stuff anymore."

After three days, she woke up and her mood had changed. "I wasn't depressed or shocked anymore and I wondered 'why?' I realised I had a short time to live and I was determined to enjoy it. I think we are all programmed to deal with things more than we think we are, you have no idea how your system will react. Well this was how mine did," she laughs, looking back now.

"You think 'This isn't happening to me. I'm active, running around, skiing, and riding'. And you realise you're not going to be able to do that stuff anymore"

She and her husband Richard, a former professor in Obstetrics and Gynaecology at Imperial College, made some immediate decisions to raise money and dedicate whatever time Irene had left to creating a research Institute for MND, along with a friend of theirs, Jonathan Stone. After systematic research in the medical journals, they discovered the best research team to do this was in Sheffield, lead by Professor Pam Shaw.

Irene Beard is driven by nature. Hailing from Belgium, at 24 she owned her own advertising firm before moving to London some years later, divorcing her Belgian banker husband, and setting up a building company, working on the houses of the rich and famous – people like Ringo Star, Madonna, the Princess of Hanover, General Ronson, and John Gordon.

But no job has had her focus quite like this one. As the Foundation secretary of SIF MND, she often works seven-hour days from home, helping develop the institute, bringing in patrons to support the multi-million pound building and research centre they're planning, and being the spokesperson for people with MND. "I'm not a normal MND sufferer, I'm one of the extremely, extremely lucky ones which is why I'm devoted to doing what most suffers don't get a chance to. Speaking out."

It's a 'forgotten disease' that Irene's doing her best to bring to the attention of the government, companies, donors and charities. During 1999 and 2004, MND killed 6,000 people – more than CJD (93) and HIV AIDS (4,600) deaths put together, but the difference in government funding is stark. Compared to the £33m and £45m awarded to CJD and HIV AIDs research, MND was given just £8m.

Why is this? "Because there's no political thrust to MND like there is with the other two. And pharmaceutical companies aren't investing because they can't make money out of it." Plus, the number of suffers never climb to the level that might propel a government into action, because people from MND die too quickly. "If you prolonged the lives of suffers, you would have 25,000 people with MND."

Currently, there is no treatment for MND. In fact, nothing bar one advancement - Riluzole which prolongs the life of sufferers for three months at the very end - has been made since Dr Charcot accurately diagnosed the disease in 1869.

It is thought that there is a ten per cent hereditary link, though Irene has none in her family background. Beyond that, there's no explanation as to why people get MND, yet 5,000 people have it Britain and 35 people die from it every week.

"There's less research funding for MND because there's no political thrust to it like there is to CJD and HIV AIDS. And pharmaceutical companies aren't investing because they can't make money"

Irene is in regular contact with sufferers, people like Shaun, a 38-year-old father of three who was diagnosed last year and now struggles to talk and eats through a straw. She says she listens, humbled, when they tell her their story. And when they ask her advice: "I tell people it's a journey and you never know which way it will take you. So they've got to take it a day at a time and not fear something that they don't know because it might not happen."

It's this thinking that's prepared her for the inevitable end of all MND sufferers. "I'm not bothered by my future and I'm not worried about death. It sounds naff but I've had a wonderful life, with a wonderful husband, children and amazing parents. I've had everything and I have this now. It's part of the package and I still want the package. I wouldn't change a thing," she says.

Still, she's not waiting around for it to happen. Armed with a quad bike to take her around the fields of her holiday home in Ireland, a chair lift keeping her mobile at home, regular trips to meet people and check on the progress of the fundraising for the institute, and an absolute determination to see some advancement in the research in her lifetime, Irene Beard has business to finish first.

To find out more about Motor Neurone Disease or to make a donation to SIF MND, visit www.sifoundation.com or email Irene direct on sif@irbeard.net