Statistics

It is difficult to be exact, but statistics for motor neurone disease tell us that:

• 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
• a third of people die within a year and more than half within two years of diagnosis
• the incidence or number of people who will develop MND each year is about two people in every 100,000
• a person’s lifetime risk of developing MND is up to 1 in 300
• around 35% of people with MND experience mild cognitive change, which can cause issues in executive functions such as planning, decision-making and language
• a further 5-10% of people with MND show signs of frontotemporal dementia which results in more pronounced behavioural change
• six people per day are diagnosed with MND in the UK
• six people a day die in the UK, this is just under 2,200 per year
• it affects up to 5,000 adults in the UK at any one time
• the prevalence or number of people living with MND at any one time is approximately seven in every 100,000.

In the media

MND has received quite a bit of coverage in the media over the years. Stephen Hawking is probably the most famous person to have developed the condition. And although on average most people with MND die of respiratory failure within a couple of years, Stephen Hawking’s condition is an incredible example of the variability of the disease. However, it is unfortunately only a small percentage of people who live a long time after diagnosis. He said losing the capacity to communicate is one of the most frightening challenges faced by people with motor neurone disease.

“My advice to other disabled people would be – concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically” – Stephen Hawking

Ice bucket challenge

In 2014 the Ice Bucket Challenge was a social media sensation. The challenge began in the US and was used to raise awareness of MND or ALS. Prior to the challenge, public awareness of the condition was relatively limited; the ALS Association in the US stated that prior to the challenge going viral only half of Americans had heard of the disease.

I am Breathing

I am Breathing tells the true story of Neil Platt, a young father who found out he was dying from motor neurone disease just months after the birth of his son Oscar. Neil wanted to raise awareness of MND and this was the focus of his last few months. I Am Breathing was launched with the UK premiere at the Edinburgh International Film Festival, the day before the 2013 MND Global Awareness Day (21 June).

Theory of Everything – 2015

This biopic, based on a memoir by Professor Hawking’s first wife Jane, deals with the onset of motor neurone disease which has left him severely disabled. The film won a BAFTA for lead actor and MND Association Patron Eddie Redmayne and took another as Outstanding British Film. The success of the picture and the attention it brought to motor neurone disease meant a great deal to MND Association members who have experienced this dreadful disease first hand.