So we've decided to enter the Manchester Marathon to raise much needed money to ensure medication & treatment costs are met.
We - Karl Chartres, Simon Jones, Tyson Taylor & Dave Robinson are all in training now and running 1/2 Marathons in Feb.
The main Manchester Marathon or 'Maccathon' is Sunday 8th April 2018.
so, if you could please donate...
Blue Moons story:
This is the hardest thing I have had to write, "I have been diagnosed with bulbar-onset ALS/Motor Neurone Disease".
On Tuesday 17th May 2016, the date of the diagnosis, our lives changed forever. Shock, devastation and every other conceivable emotion has followed since that day and continues to do so, but we are determined not to let this destroy our family. I am 45 years old and my two young children don't know. My wife and I have decided not to tell them until we feel it is the right time to let them know which is why the title above is known as "Blue Moon".
Amyotrophic Lateral Sclerosis (ALS) or Motor Neurone Disease (MND) is a progressive disease that attacks the motor neurones or nerves in the brain and spinal cord. This means that messages gradually stop reaching muscles which leads to weakness and wasting. ALS/MND can affect how you walk, talk, eat, drink and breathe.
At present, there is no cure for ALS/MND and the only treatment available on the NHS is Riluzole which doctors believe can extend my life by 3 to 4 months. All other treatments provided are for management of symptoms to achieve the best quality of life.
You may remember the Ice Bucket Challenge in 2014, that was for ALS/MND and since then there are more teams of people all over the world that are looking for treatments to slow the progress, reverse it and hopefully find a cure. If you scratch the surface of the research you will see that they are a long way off finding a cure, but if you dig a little deeper you will see clinical trials for drugs, some in use already for other diseases. You will also read about stem cell research in Israel and USA.
I am going abroad to Mexico for stem cell treatment, which has been paid for by my family at a cost of £23,000. This procedure includes harvesting and applying large quantities of my stem cells which are drawn from my own bone marrow. This treatment also includes keeping some of my harvested stem cells and sending them to a licensed laboratory for further cultivation to enable me to have further injections every 3 months, depending on how I am progressing. However, there is a further cost of approx £5,000 for each stem cell booster injection thereafter (including flights).
I am hopeful that this procedure will slow the progression down to enable me to continue with a good quality of life.
I would be extremely grateful if anyone would like to help and donate towards my ongoing medical expenses. Also, if anyone would like to do their own fundraising, I would appreciate that very much.
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