‘I’m not living with MND, MND is living with me’

A WHEELCHAIR half marathon has helped to raise £1,500 for the MND Association’s Cambridgeshire Branch.

The event was organised by Lee, who is living with MND, as part of his fundraising initiative, MND Elite. On the day, Lee’s family and friends come together to raise £3,000 which will be split between the Association and the Arthur Rank Hospice in Cambridge.

Lee was diagnosed with MND in 2019 and has been determined to remain positive for his wife and their two children. His mantra has always been, ‘I’m not living with MND, MND is living with me.’

So far, Lee’s fundraising activities, which include a two-day virtual cycle and row, have raised more than £12,000, which has been used to help fund the Association’s young persons’ and quality of life grants.

He said:

“The day was a huge success with an amazing turn out. I want to say a massive thank you to all my team who gave up their time to support me and the families who came down. Each and every one of you should be so proud of yourself, without you none of this would have been able to happen. We raised a massive amount for two fantastic charities.”

In addition to raising funds, Lee has also written a book called MND navigate: your mindset matters, which charts his journey with MND from diagnosis to having a PEG (Percutaneous Endoscopic Gastrostomy) fitted.

He said:

“I paused the book for a while as I felt really for the first 17 months I hadn’t been dramatically impacted by the disease. The book has been read by a few friends and have said it left them crying, laughing and inspired. Realistically, I hope to have the book publishing by spring.

“I have one chance of being terminally ill, I intend to make the most of it!
“With a terminal illness comes great responsibility. You need to be positive through adversity – everyone else around you will follow.”

“MND does not stand for motor neurone disease, it stands for motivation, no negativity and determination,’ and the most dominant quote in my book is,
‘Don’t live for today, it’s too short term. Just live.’”

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262