Two years ago I attended a Leadership event run by Robin and Cal Brooks in Oswestry, Shropshire. The guest Speakers that day were John & Arlene Chart. Their talk left a huge impact not only on myself but on everyone in the room. John shared the story of his fight against MND (Motor Neurone Disease). A disease that there is no real cure for and has such a devastating impact on the human body.

What really shone through that day were John & Arlene’s resolve and determination to do everything in their power to raise awareness of the disease. It inspired many in the room to think of ways in which they could help raise funds to help with a research project being carried out by Jemeen Sreedharan at Kings College in London.

On 28th June Mark Oakley and I will be taking on the challenge of climbing Kilimanjaro. I can’t say I’m not nervous about the prospect of climbing the highest ‘free standing mountain’ in the world without oxygen, but we are going to give it our best shot! The Uhuru Peak lies in Tanzania’s National Park and is 5895m above sea level.

This is also a personal quest for Mark as he lost his father to this dreadful disease. We would both really appreciate your help and support to raise funds for this very worthwhile cause.

Derek Thomas

(Please take some time to read John Chart’s story below.)

John’s Story

Hello, I'm John Chart I'm 49 years old and live in Beckenham, Kent.  We all go through life just plodding along and taking things for granted, me included. I've had a great life, better than some,  had some amazing people in my life, and done just about anything I put my mind to in my typically determined way. I was proudly a London Firefighter for over 26 years serving the local community until I gave the job up in July 2018.

I always pride myself in doing the best that I can, even if it was messing up and this was reflected throughout my life. Having always participated in various sports I represented the brigade and great Britain in powerlifting and travelled around the world winning gold medals and gaining a world record or 2 along the way! The gold medal I won in New Zealand in 2002 is inscribed on the back with a dedication to my beautiful daughter Gracie who sadly passed away.  Being strong, being fit and able was always important to me.

So, after going to the doctors in early 2016 with some symptoms, namely twitching muscles in my right arm we were under the impression it was a neck injury trapping nerves which could be resolved with a tricky little operation and I would be good to go. Then, after some MRI scans and EMG tests in may 2019 my world was turned upside down and some! I was told that I may have Motor Neurones disease, I cried there and then with my partner then went straight to my boys, it was the most upsetting thing I've possibly ever done telling them what I may have and the consequences of a confirmed diagnosis. I have cried more since diagnosis than in my entire life. After some last ditch tests and an agonising few weeks I went with my partner at the time (now my beautiful wife), Arlene, to the neurologists on July 10th 2019 and unexpectedly we were told the diagnosis there and then that I have Motor Neurones disease.

Most of us know not much more than the fact that Professor Stephen Hawking famously contracted and fought this disease for 55 years and couldn't move, was in a wheelchair and spoke through a computer.  Motor Neurones Disease, or amyotrophic Lateral Sclerosis (ALS) as its known in the USA amongst other places is a FATAL neurodegenerative disease whereby the motor neurones in the brain & the spine which send the signals to your muscles to move start to die off because of a genetic process in the cells. Even though experts are learning more now than ever about what actually happens in the body and discovering more genes that are mutated and affected by this, no one knows why it starts and, no one knows how to stop this, so, it's incurable. It is thought that a combination of life, stress, toxicity in the body and genetics are the main cause. Nearly everyone with this dies within 3 to 5 years of symptom onset. so I've already almost outlived the odds. It's sometimes referred to as the 1000 day disease for the obvious reason, clues in the name. Despite being documented for around 150 years still very little is known about this fatal disease. It is one of the few diseases that give no physical indicators in the body that confirm you have it so, diagnosis is completed by working backwards and eliminating all other possible causes before finally labelling you with MND.

I am on the MIROCALS clinical trial at Kings College hospital in London. This involves 5 injections of a immunotherapy drug called Interleukin2 each month which could hopefully slow or halt progression, I'm praying. The problem is that every positive result in laboratory tests on mice has never replicated when trialled on humans.

Despite being given this diagnosis I am determined now as I always have been to beat this!! I will not surrender to this. Anyone who knows me knows that I will put up a great fight. There are a very small number of people, 42 currently confirmed who have survived this disease, 1 in the UK, for whatever reason, genetics, supplementation, positivity? I want to join the list. www.healingals.org is the site to read more about some of these remarkable survivors if you are interested. Please watch this short, inspirational video of a remarkable young man, a survivor from Portugal.

Many of you may remember the ice bucket challenge a few years ago? I took part myself with a cheeky little cameo stepping out of my Fire gear revealing my plastic nurses outfit that I borrowed from Dan Bowers cab driving outfit's wardrobe, before being dowsed in freezing water at the Fire Station. But naively I didn't even take the time to read what I was actually raising money for. The young man who started the challenge, Pete Frates, sadly lost his battle with MND only a few months ago after raising awareness and over $250 million dollars towards the cause of finding a cure. Here I am now, unbelievably suffering from the very same rare disease! 2.9 in 100,000 contract it.

Sadly a handful of high profile sports persons have recently contracted this disease and are raising awareness, Doddie Weir the ex Scotland rugby union forward, Stephen Darby ex Liverpool footballer, Rob Burrows the ex Leeds rhinos and England rugby league player. Tragically one of the greatest rugby players of all time, Joost Van Der Westhuizen of South Africa contracted and died of this demonic disease in a headline making fight in February 2017. despite being given 2 years max he lasted around 8 years in his fight with MND. RIP champ!

How does anyone deal with this? Well, there is no right or wrong. To say things are hard both physically and mentally is an understatement. I thought luck couldn't get much worse when my young daughter Gracie died many years ago.

I have slow onset/limb onset, whatever slow means, which could give me a few more years to live but, no one can tell me this for sure. Yet despite all this I class myself as one of the lucky ones, I'm lucky because I have my amazing 4 young boys  Christopher, Oliver, jake and Lucas who are my life, I'm lucky because I have an amazing, beautiful wife who won't leave my side, I'm lucky because I have an amazing supportive family , I'm lucky because I have some of the most amazing friends anyone could wish for and finally, I'm lucky because I have a chance, I have a chance to make a difference, a difference to my loved ones lives in teaching good values and giving my kids the knowledge to go on and do everything they want to in life, a difference in spreading my new found knowledge in the mystery that is MND and a difference to my life, I want to make memories for my loved ones and memories to take with me! I'm lucky to have the chance to plan for the inevitable, to say my goodbyes.

So, after having a beer or so with Mr Darren Rose and him telling me he was planning to ride the length  of the UK from John O'Groats to Lands End, 876 miles, I Immediately said I'd do it too. After another beer It began to sink in what I'd said. Originally this was a personal challenge for me but now, and after the suggestion from Darren, this is a fundraising event whereby we can hopefully raise awareness and funds for MND. I want to smash our target, I want to put this out there to anyone & everyone. We are hoping to get a group of friends, family or supporters to clap us in at Lands End. How amazing would that be, and emotional to say the least. Let's do this, as a team. Let’s smash this!