Wednesday, May 29, 2024
https://gofund.me/5897d10f
I found out recently that my friend Chris Burton has received a diagnosis for Motor Neuron Disease (MND). Chris is a respected and well-loved activist in my hometown music scene and has been for thirty years, easily. We go back to the late 1980s. If I had not met Chris, I may never have played music or met the people who made up the music scene I was a part of for a few years back then. He was crucial in the building of our 24/7 rehearsal and gig space AKA ‘The Fridge,’ a weekend haunt of many of our mutual friends. He has also been active in the national scene and has many friends up and down the country. If I tried to list the bands he has been in and projects he has worked with, I am sure I would miss a few.
Like everybody who knows Chris, news of the diagnosis has hit hard, and I know that the disease has already led to major challenges to his daily life. It has made his work as a graphic designer and musician impossible. I was told about this in January and Chris has had to make some significant adjustments. He now uses a wheelchair for mobility and has had to move into adapted accommodation. Even in this short time, his quality of life has been diminished.
MND is a cruel disease that shortens the lives of all sorts of people regardless. Thankfully, it is rare, but there is no cure. While the disease affects the body, it tends to leave the senses intact. This is why it is so important that everything be done to help Chris get the things that he needs – some of those things include Eye Gaze tracking technology, a condition-specific wheelchair and a wheelchair accessible vehicle. Sian, his partner, has been fundraising and it is heartening to see just how generous his friends and the scene have been. The fundraising is close to the £10,000 they hoped for.
So, I also want to do something to raise some cash. I don’t want to look back in five years’ time and think that I didn’t do anything to help Chris at a critical time. I have hit on a foolhardy idea that I think is achievable. I am going to ‘Run the Highland Way for Chris.’ It is a national trail that links Glasgow to Fort William. People have been doing it as a race for years now. In fact, it is one of the longest established ultra races in the world. The West Highland Way runs through some of Scotland’s most iconic and scenic landscapes, over a couple of hills and alongside Loch Lomond. Some of the ground is a challenge but it is nothing compared to the challenge of living with MND.
Of course, I have never run a hundred miles before - which is good because the Highland Way is shorter than that, at 95 miles. I am hoping that I can do it in under 35 hours. If I can do it in 30 hours, that would be something. I have a small support team who will meet me at several points along the Way with food, hugs, changes of socks and fresh Body Glide. It will mean running through the night and on into the next night, in whatever weather the Highlands throw at me. I am training to do this in the first weekend of October, so at least the midges will be gone, and the wind will be in my favour.
So, if you can see your way to donating, we will see what we can do to help a friend.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment