Hi,

When I was setting up this page there was a standard text saying how bad ALS is, how good fundraising is and how important money is to research. Whilst I agree this, the set text had no passion and no personal impact. Yes, fundraising is important, but it is not everything. Fundraising is a general good, but I really want to make a difference to individuals.

Motor Neuron Disease killed my Mum. The General Practitioner had no experience with it and could not diagnose it, so months passed with no support. After the eventual diagnosis she did not know how important it was to record her own voice, so her only communication in the final months was through an iPad with a stranger's voice and the wrong accent. We didn't even know simple things like only food she could eventually eat was custard that was full of sugar, so it was even more important than ever for her to brush her teeth three times a day, which she could not do as she had no muscle control.

The first step to helping is to make more people,including doctors, aware of the disease and giving them something to talk about. That is why I will be doing a solo, long distance endurance on the Summer Solstice, June 2, the longest day of the year. I will be starting as soon as there is enough light in the morning and will keep going until it is too dark to continue at night, 18 to 19 hours from start to finish. I will be going as far and fast as I can, aiming for at least a triple Marathon but maybe up to 150,000m. It will be the toughest physical thing I have ever tried.  I know I will be worn out long before the end, my hands will be blistered and my legs shaking. I have months of training ahead of me even to make the attempt. 

I have never done something like this before. I do not know what to expect. It is intimidating and it will be lonely. It will not be nice, or pretty and honestly and I really do not want to do it. I may be exhausted, but I will continue because that is what I do. That may sound familiar, but for me it will only last a day.

So please, if you can afford it, make a donation. I truly do appreciate every penny, and every penny really does make a difference. But more importantly, talk about ALS and Motor Neuron Disease, and spread awareness of the disease. Support anyone who may have it, and their families. Let them know, "You are valid. You are seen. You are loved. YOU ARE NOT ALONE!"

Thank You,

Mark