This year I am running the The Rob Burrow Leeds Marathon to commemorate my mother’s battle with Motor Neurone Disease (MND) and to raise funds for the Motor Neurone Disease Association Northern Ireland.

My mum Julie was diagnosed with Motor Neurone Disease (MND) in December 2021 and passed away on the 29th of November 2022.

MND is the generic term given to a group of rare and terminal neurodegenerative diseases that affect mainly the motor neurones of our central nervous system. These nerves facilitate voluntary movement. MND strips an individual’s use of their limbs, their ability to speak, eat and even breath.

It is a cruel and crippling disease that on average leads to death within 30 months of the first signs appearing. While the journey of a person with MND can vary, many of the things Julie experienced and felt are the same as the 5000 people in the United Kingdom who battle MND at any one time. 

The outlook for those with MND is currently bleak. There is no cure. The only treatment licensed for use is only thought to extend life by a few months.

On a daily basis people with MND experience a range of issues; excess saliva that they can struggle to swallow, cramping of their wasting muscles, the inability to eat or drink and the impairment of breathing.

As time progresses a person with MND can lose their mobility, their strength and their voice, but not their soul. 

While they lose their external shell, they are still the person who still thinks as they once did, they still have the same memories and are the same person you love. It is easy for others to treat them as though they are cognitively impaired or to look at them differently. They deserve the same dignity and respect. 

This is why the work of the Motor Neurone Disease Association is vital. They are a charity focused on improving access to care, research and campaigning for people affected by motor neurone disease. 

To provide high level personal care and produce groundbreaking research they need a great amount of grass root support and donations. Their tireless campaigning is creating awareness that will hopefully improve state funding that can be used on care and research.

Therefore, I am honoured to be running the Rob Burrow Leeds Marathon in May 2024 in honour of my mum and for the MND association.  On behalf of the McEvoy/Shiels family, We greatly appreciate any donations or support you can give. 

Julie Rose McEvoy, 

29th January 1965 - 29th November 2022.