The word most frequently attached to Motor Neurone Disease is 'cruel'. Another is 'heart-breaking'.

There is no cure and those who get it often find that by the time they are diagnosed, their life expectancy in years can be counted on the fingers of one hand. Meanwhile the progress of their illness can be devastating for both the patient and their loved ones.

MND is a terminal illness, a progressive neurological condition which attacks the muscles by interrupting signals which should reach them from the brain. Over time this means they grow weaker and stop working altogether.

As the disease takes its course this can mean sufferers lose the use of limbs – unexplained falls, or clumsiness are among the reasons people often seek medical advice, leading to diagnosis. Eventually those affected will end up using a wheelchair and unable to care for or feed themselves.

But as it worsens, patients will become unable to speak and ultimately the muscles controlling the lungs are affected too, which is the most common cause of death.

The cause of the disease is not known. For most people genetics is not a major factor but it is thought that a combination of genetic, environmental and lifestyle risk factors may contribute to someone developing MND.

As a result of the limited knowledge of how MND starts and progresses, there is little on offer in the way of treatment, so the best patients can hope for is a suitable package of care and support, treatment to manage some of their symptoms and ultimately palliative care.

While prominent cases such as football's Fernando Ricksen, scientist Stephen Hawking – whose longevity defied all expectations of the disease – and rugby's Doddie Weir have brought more public attention to the disease, research into a cure remains at a low level.

Only around 5,000 adults in the UK at any one time will affected by MND, making it relatively uncommon. This means pharmaceutical companies have not prioritised it and it also means doctors, nurses and social care workers may not see many cases.

Doddie Weir, who was diagnosed three years ago has devoted the time since then to campaigning to raise awareness and to fund-raise to research the condition and look for a cure. At last month's book festival the Scotland legend was scathing about the treatment of sufferers by the NHS, which he described as 'cut-throat' and said patients were being left to turn to the internet to work out how best to help themselves.