In May 2021, Simon’s mum Anne was diagnosed with motor neurone disease (MND). What started as a pain in her neck quickly turned into the most unimaginably cruel illness that ultimately took her life 14 months later.

MND wasn’t something we knew a lot about as a family, but we had to learn quickly to understand how best to care for Anne.

The MND Association helped fund an MND practitioner who was an absolute godsend in providing information and advice to ensure Anne was as comfortable and well-supported as possible.

Without that, we would have been navigating this horrendous illness completely in the dark and without those practical measures that helped make such a difficult time that little bit easier.

They helped us prepare physically and emotionally to every challenge that came along the way. And there were a lot.

MND strips your loved one of the things we all take for granted as human beings - being able to walk, talk, eat, drink, swallow and breathe. To watch it happen before your eyes, and so rapidly, knowing you are helpless to stop it is completely heartbreaking.

We are both running our first marathons to raise money for the MND Association in memory of Anne, to help make sure other families get the invaluable support that we did, and to ensure the ongoing work to find a cure for motor neurone disease can continue.

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Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.

MND can affect how you walk, talk, eat, drink and breathe. Although there is currently no cure for MND, symptoms can be managed to help you achieve the best possible quality of life.

MND Association Patron Rob Burrow CBE sadly died on 2 June 2024, four and a half years after he was diagnosed with motor neurone disease.

We need your support.

£160 could fund a specialist communication app for a tablet/smartphone/laptop to enable a person with MND to continue to communicate with loved ones

£280 could fund the co-ordination of care for a person with MND at a care centre for a year

£1000 could pay for detailed analysis of the DNA of someone with MND to help us better understand the causes of the disease