A Quarter of a Million...

June 17, 2024

So I got an amazing piece of news this week which you may have seen on our social media. We have now raised over a quarter of a million pounds. It's a stupid amount of money to have raised and I can't help but reflect on the journey to get here. When Emma and I decided we were going to go all out and start a charity, rather than me doing a one off fundraiser: we were between houses. Just six months after my diagnosis our house was no longer suitable, I could no longer manage the stairs without a significant amount of help so my choices were limited, move house or confine myself upstairs.

Thankfully Emma is far more proactive than me and started working on our house move whilst I was still in hospital. This meant we had sold our old house and bought the one we live in now in just enough time. Thinking back it's incredible how quickly things declined in that first 12 months. I'm so fortunate that things slowed down the way they have, so fortunate to have more time than expected.

When we were between houses we had moved in with Emma's Dad, John. I had a hospital bed from the Red Cross and had turned John's dining room into my new bedroom. Unfortunately I couldn't manage the stairs to get to the shower, so my Mum or Dad would take me to East Leake leisure centre where I could get cleaned up. That will give anyone a reality check... 12 months before I was riding my bike around the Peak District (admittedly quite slowly) and there I am, using all of my energy and concentration to stand without falling whilst one of my parents washes me in a public leisure centre.

It's hardly surprising that I wanted to fight back. Do something, anything, to get back at this disease. Channel the grief, the frustration, the pain and the anger into something positive. Something that would mean I wasn't losing to MND every day, some days I would win, and I didn't know it at the time, but some days I would absolutely kick its arse!

There I was. Lying in the hospital bed in John's former dining room, Emma and I having decided just a few hours before that Stand Against MND was going to become a reality.

Anyone who knows me will tell you that I don't do small ambitions, and I set my expectations as high as I can see. I didn't get any sleep that night... my mind on overdrive coming up with ways to inspire people to raise money, and things that I could do to raise funds myself. I definitely came up with One More Tri and Sam's 40 that night.

I also wondered how much money this new idea might raise. Now you know I don't do small ambitions... I can honestly say that the most I allowed myself to dream of raising that night was £100k. That seemed like such a ludicrously huge sum of money. It felt like a complete impossibility when that bus driving buffoon told us all (didn't apply to him though) that we weren't allowed to go out for the best part of a year. Remember home hair cutting?

Now here I lay, a bed improvement and a few mattress upgrades (pressure sores are to be prevented at all costs) later, with a triathlon and two and a half marathons in the bag. Waffling to you and trying to comprehend how we have raised a Quarter of a MILLION Pounds.

I'm genuinely so grateful and so thankful. It might look from the outside that I just come up with ideas, dabble on Facebook for a bit and the rest just happens. That really couldn't be further from the truth. There are the Trustees and an army of people who have given up their time and effort just to help make my ideas and my ambitions a reality. I really hope that at some point I've taken the time to thank you personally. But if I haven't, firstly I am very sorry, and secondly, THANK YOU!

That thanks is also passed to every person who has raised funds or donated any amount. It goes without saying that this would all still be an idea without you.

There has been an unfortunate side effect of all this success. Not unfortunate for me, I love it.

I have become an absolute nightmare. I have learnt so much about how to get things done and how to talk people into doing stuff for me. If you were polite you would call it persuasion, if you were my Mum you would say "Samuel stop being so rude!" This level of success has of course done nothing to temper my ambition, so many exciting things in the pipeline that I can't wait to tell you about...

Of course it is great to have raised all that money but you also need to have a plan of what you are going to do with it, to make a difference. One of the reasons to establish our own Charity in the first instance was due to my own desire for money raised and donated in my name to be predominately invested in research. That's a wonderful goal in principle but once we started generating reasonably significant amounts, it became clear we were going to need some sort of strategy.

Firstly I thought about what we couldn't do. We can't sponsor enormous clinical trials, our contribution would be a drop in the ocean and frankly, that's what Government and Industry should be for. Many of those projects used to be funded by the EU, but Nigel from Kent lacks compassion for poor people in boats, and foreigners (except his wife), so there's not quite so much of that these days, cheers Nige.

I digress...

As a small charity we're also not in a position to judge the merits of any particular research projects. We'll leave that to the really smart review panels employed by government departments and big charities.

So I started to think about what research fundamentally is... It's a huge pile of information generated by the ideas of the brightest minds in society over thousands of years. Unfortunately those brains also have to dedicate some of their attention to paying for somewhere to live, eating and drinking, you know, the pursuit of happiness. So they have to get paid for adding to that monumental pile of knowledge. Continually building that pile until one day: MND isn't a torturous death sentence for every person diagnosed, Alzheimers stops taking everything from the families it ravages, and cancers can be treated at the GP (so long as you can get an appointment).

So that's what we do. We pay for incredible people to commence their research careers adding to the MND pile. Your donations have helped four PhD students launch their MND careers so far.

We hope that they will keep adding to that pile for as long as they are able to, and I pop to see as many of them as I can just to remind them how important their contribution is. Seems worthwhile to me.

We also recognise that the core of our support is based in the East Midlands, and we're so grateful to be able to recognise that through our partnership with the University of Nottingham in collaboration with the MNDA.

A Quarter of a Million... It's been quite an adventure since sleeping in a dining room... The Stand goes on.

I'd love it if as well as taking the time to read my ramblings, you could support our awareness campaign in the run up to Global MND Awareness day this Friday, the 21st of June. Keep an eye on our Social Media for details.

Donate here

Sam x

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A Quarter of a Million...

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