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Lunge4MND

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Our team here at Elev8 gym have wanted to take on a 'challenging' challenge and we have collectively decided (god only knows why) to take on a beast of a challenge. 24 hours solid of lunges! not the easiest exercise to perform even for 5 minutes but 24hrs! We plan to have 2 people lunging at any one time with possibly 10 or 20 minute stints. Because of covid once in the gym (www.elev8fitness.co.uk) we will be staying put for the 24 hours and getting our heads down in the boxing ring when the chance is there. We are waiting on Guinness to come back to us to see if we can record the official Guinness World record for this challenge. How great would this be? The challenge will take place on 24th & 25th October 2020. We have put this challenge together as our offering in raising awareness of Motor Neurone Disease as part of our good friend John Chart's continuing awareness campaign (cyclechallange4mnd on Instagram & Facebook, please follow) following his diagnosis of this awful terminal disease last year. Watch for updates from now as we build up to and organise the event into something special. We will also be asking for people to join us 'virtually' via instagram throughout the 24hrs to 'lunge' with us. Please see John's story below:

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.

6 PEOPLE EVERY DAY ARE DIAGNOSED WITH MND
6 PEOPLE EVERY DAY WILL DIE FROM MND
IN THE UK ALONE.
50% DIE WITHIN A YEAR OF DIAGNOSIS
80% DIE 2 TO 5 YEARS FROM SYMPTOM ONSET
YOU HAVE A 1 IN 300 CHANCE OF CONTRACTING MND IN YOUR LIFETIME.

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 trialed 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, 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, following on from our extremely successful OP JOGLE cycling challenge (above) with the amazing Pilgrim Bandits (www.pilgrimbandits.org) our latest challenge!! Well my close friend Dean Ash a former pro bodybuilder, bodyguard and athlete decided (god only knows why) to take on a beast of a challenge. 24 hours solid of lunges! not the easiest exercise to perform even for 5 minutes but 24hrs! We plan to have 2 people lunging at any one time with possibly 10 or 20 minute stints. Because of covid once in the gym (www.elev8fitness.co.uk) we will be staying put for the 24 hours and getting our heads down in the boxing ring when the chance is there. We are waiting on Guinness to come back to us to see if we can record the official Guinness World record for this challenge. How great would this be? The challenge will take place on 24th & 25th October 2020.

Dean & the rest of the team have wanted to set this challenge up in order to raise funds for the ever more needed adaptations needed in our home and vehicles, which will enable me to have some semblance of a normal life and
independence  for as long as possible. Unfortunately everyday tasks are becoming more difficult now my symptoms have progressed. any adaptations cost thousands of pounds, for example, a neater eater, designed to spoon food in the air so I can eat £5000! the figures are phenomenal.

Please be kind enough share this campaign with all your contacts whether it's WhatsApp, Twitter, Instagram, Gaydar or Facebook and if anyone has any close contacts in local, or national press, radio or TV, would they possibly be able to get us a few seconds of their valuable time. I really need to make this count. I am determined to raise awareness as best I can.


THANK YOU FOR TAKING THE TIME TO READ, SHARE OR EVEN DONATE TO MY CAUSE. WATCH THIS SPACE FOR UPDATES ON OUR FUNDRAISING AND PREPARATION . IF YOU WISH TO BE A PART OF THIS AND JOIN THE TEAM WHICH IS NOW 13 OF US, PLEASE DON'T HESTITATE TO CONTACT ME.
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Donations 

  • Lone Hubbard
    • £20
    • 4 yrs
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Fundraising team: Team Elev8 (11)

John Chart
Organizer
England
Arlene Chart
Team member
Christopher Cloud
Team member
Dean Ash
Team member
Jayne King
Team member

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