Tag Archives: fundraising

288/365 – Solving the unsolvable

On my first day of annual leave for several months, Elaine and I spent a chunk of it at Bletchley Park. If the name is familiar and you’re not sure why, BP is where the enigma code was cracked in WW2 by Alan Turing and his gang of geniuses. 

Enigma machines were used to encipher the content of Nazi messages and were thought to be unbreakable. In the museum, the scale of the challenge was stressed over and over again. The way the Germans used the enigma machines, which had been originally created by a Dutch company for the financial sector, meant that there were always 72 million million different combinations meaning not even the  collective brainpower of the smartest people in Britain could solve these puzzles without mechanical help. So, as anyone who has seen the Imitation Game knows, Turing and co created a machine to work through all the possible combinations and they cracked it. 

It made me think about the environment that is necessary to ‘solve the unsolvable’. Naturally in this blog, I’m considering how we find out what causes myasthenia gravis and how we cure it.

1. A lot of money

During WW2, Winston Churchill knew the value of code breaking and he ordered that no expense be spared to crack the enigma. With that kind of backing, the impossible was shown to be possible – with money to spend on trialling different techniques and scaling up the number of people focused on the task. While not all there for cracking the code, there were around 9,000 people working at Bletchley during WW2. That is obviously not the reality for myasthenia. 

As MG is a rare disease, curing it is not a matter of national/international importance. Research needs to be funded and there is constant competition for this money. So funding research is often left to charities like Myaware in the UK and the Myasthenia Gravis Foundation in America. That’s why fundraising and spotting opportunities to link charities to business for sponsorship is so important within the myasthenia community. The money you raise could help find a cure. 

On the other hand, even if a ‘cure’ is found, there is the question of whether the NHS would be able to afford to supply it. As discussed previously, there is research happening in Switzerland about a vaccine for MG. I’ve asked my consultant to look into it but even if it is found to be successful, whether it would be offered in the UK depends on funding.

2. People willing to take risks

The people involved in cracking the enigma code were willing to fail over and over again to find a solution. Like our modern day researchers, there was pressure on them to succeed but they didn’t let it stop them nor did Alan Turing seem to listen to the criticism.

When it comes to MG, you need both researchers and patients that are willing to take risks and push boundaries to help find a cure. That’s not an easy ask – it takes people who are willing to learn from failure.

3. Commitment 

Anyone responsible for creating something ‘unachievable’ has been obsessed in the process. Nothing less than obsession helps them push through the heap of others that have tried and failed. To allow something to become your obsession, it often needs to be personal – will this change your life or the life of someone that you love?

Most days I have a moment where I wish I had been more interested in science growing up. If I had been, I reason, I would be in a position to help myself and others with myasthenia. Bit of a jump I know and while it’s not too late, I doubt I will go back to re-train as a scientist. However, I believe the myasthenia community will benefit from the more young people with MG or who’s parents have MG that we can encourage to be scientists, doctors and researchers.

4. A bigger cause

As mentioned in point 1, curing myasthenia will never be seen as a national or international priority because it is one of many rare diseases. But could we have more success if we worked together with say all of the other auto-immune diseases on reasons why conditions related to the immune system are caused? Or clubbing resources to work on a cure? Now that would be of national significance. 

I’m sure there is ongoing work around this already, but as I said these are some observations about the climate for ‘solving the unsolvable’.

124/365 – Saying ‘I can’t’ because of myasthenia

Yesterday I took a notion that I want to run the London marathon next year for Myaware. The marathon length run is a challenge I’ve longed to take part in ever since I completed my first half four years ago. 

Three years ago I found walking the same distance agony due to my ruptured cruciate ligament, yet when I was walking that distance all I could think was how much easier running it would be. The eight hours down to four – the pain potentially worse but the recognition greater. 

However, when I was speaking it through with Elaine, the matter of whether I could complete it came up. Whether I would be putting myself in a lot of risk. Last year when I raced the last section of the Hackney half marathon, I got such severe cramp in one legs that I couldn’t move it – what would my body be like for double the distance? 

With the combination of my knee and my MG, if I say ‘I can’t run a marathon’ am I telling the truth? Is that fear talking or my, often absent, sensible voice? I was encouraged growing up to never say ‘I can’t’, and now this idea is prominent culturally with the #thisgirlcan etc campaigns. But in this case, my body may not be able to physically take the strain of a marathon.

I think the only way to know is to try a longer run over several hours – stopping if and when I need to. Rather than signing up, and committing to raising funds for Myaware, I should see whether I am able to go close to the distance. I want to believe that with enough training it’s achievable, but I won’t let my stubbornness put me at risk. Perhaps I’ll need to create my own challenge again. 

105/365 -Raising funds for myasthenia 

Whether you’re a fan, are sceptical or loathe it, fundraising plays a vital role in keeping charities that support people with myasthenia going. It costs Myaware £3,000 a day to provide its services in research, support and awareness. That’s £21,000 a week, £84,000 a month and more than £1m a year. If you’ve ever been supported by a charity like Myaware you have done so because an organisation has donated money, one of the staff have fought hard for a grant or someone has worked hard to raise funds.

It was this reflection that made me decide to do some fundraising for the charity last year. I thought about the way the lovely Maria had provided help and support for me when I first was diagnosed – without her I probably would still be in the process of getting a consultant. The way she’d invited me along to meetings and spoke to when I nervously arrived. I had wanted to do a triathlon but on the aziathioprine was advised not to swim in open water. So I decided to do a staggered triathlon – a 120km walk, a 13 mile run and a 60m cycle. In the end I raised about £1,100 thanks to the effort and generous support of friends and family. It felt like a lot of work but I was delighted to be able to contribute those funds to a charity that had supported me.

I’ve decided to take a break from fundraising this year as I raised funds for Aberlour in the Kilt Walk the previous year and don’t want to put financial pressure on my loved ones. However if you’re thinking about taking part in a sporting event or are looking for a challenge, physical or otherwise, there are lots of ways you can raise funds for Myaware available here.

My mum is going to do some ‘can shaking’ for Myaware in the next few weeks with the Midlothian branch – that’s something you could do with one of the local branches or, if you organise it with the charity via info@myaware.org, with a club or social group.

If non of these take your fancy you could do what I did and create your own charity challenge or event. You could do something fun and relatively easy like doing Up at the 02 arena (just don’t do what I did and try to do a ninja kick for a photo at the top – ended up having to slide down part of the way on my bum as I hurt my knee). The world is your oyster and every penny will be gratefully received. Not just that, I can guarantee it’ll make you feel great to contribute to an organisation that offers so much to people who don’t often have their condition acknowledged.