MOTOR NEURONE DISEASE (MND/ALS)
Motor neurone disease (MND) describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do.
I have answered some of the most common questions below, but for more information, please visit the MND Association website below.
QUICK FIRE QUESTION
What happens with MND?
With MND, messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen and waste. MND can affect how you walk, talk, eat, drink and breathe. MND affects everyone differently and not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.
Who does it affect?
There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50.
MND affects up to 5,000 adults in the UK at any one time. However not only does it affect the patient it also affects many families. Many people caring for or being cared for by a partner said the experience had brought them closer together, but occasionally the diagnosis brought tensions to a relationship or caused it to break down altogether.
Is there a cure?
If you were to design the cruellest of diseases, this could be it. Known as the 1,000-day disease it kills most patience within 3 years.
There's no cure for MND, but there are treatments to help reduce the impact it has on a person's daily life. Some people live with the condition for many years. MND can significantly shorten life expectancy, but unfortunately, eventually it leads to death.
THOSE AFFECTED WITH MND
Here I wanted to shine a light on many of those people across the world who have been affected by MND and who are fighting their own fight against this cruel vocation.
UK DAD WITH MND SWIMS 11,000 METRESS NON_STOP TO SET NEW WORLD RECORD
When Mark O’Brien was diagnosed in 2022 with motor neurone disease (MND), also known as ALS, his life was turned upside down.
Mark’s efforts have seen him raise almost £25,000 for the MND Association.
#ICEFOOT92.
Remember the ‘Ice Bucket Challenge’, which saw celebrities being doused with freezing cold want to raise awareness and money totalling $220M worldwide.
Well, now there’s a new chilly challenge on the scene. The Ice Foot 92 challenge involves immersing your feet in icy water for 92 seconds. It was launched by former professional footballer Len Johnrose who is challenging his football family – all 92 clubs across the top four divisions in England and Wales as well as their fans
5000 in the UK alone might have the condition, but many more people suffer.
NEWS & VIEWS
Some positive vibes, great stories and hope from across the world
New genetic therapy could be a gamechanger for MND and frontotemporal dementia
16, February 2024
Macquarie University neuroscientists have developed a single-dose genetic medicine that has been proven to halt the progression of both motor neurone disease (MND) and frontotemporal dementia (FTD) in mice – and may even offer the potential to reverse some of the effects of the fatal diseases.
Promising motor neurone disease research could ‘reverse’ condition
10 February 2024
Australian motor neurone disease patients will be the first in the world to trial a “novel” treatment.