Facebook is a wonderful thing not least because of all the interesting content that gets shared by the people we choose to surround us in the virtual world. Last week, one of my connections, and a member of Myaware, posted this fantastic map of Myasthenia Gravis around the world.
Hosted on the disease map website, this crowd sourced map asks people to add themselves and you can see that there are very few continents which aren’t touched by MG – Asia looks like the least affected but I imagine this may not be translated into different languages?
As you can see from the image above, the purple sign of women dominate this map so if you are a male with myasthenia please add yourself to it so the tool gives a better reflection of those affected around the globe. This is probably due to the fact that MG tends to affect women at a younger age and they are more likely to be digitally savvy due to being younger.
When you zoom into the map, you can click on the individual people to see the information they have added (like the image below). This means if it reaches a wide enough audience this map might even be useful for research or collaborating on awareness raising/fundraising around the globe. It may also be useful to see if there is someone near tou with the condition – it help us feel less alone .
If you haven’t already added yourself to this map (which I haven’t) then please do so if you feel comfortable.
As the political parties are about to kick off their Autumn conferences, the Myaware events have already begun. These regional conferences allow people with myasthenia to meet socially, gain support, listen to speakers covering different topics and hopefully come away with a firmer sense of community.
Doing a tour around the country, the regional conferences have already taken place in Northern Ireland and Chester. Below are the upcoming dates:
- 27th September – Yorkshire
- 3rd October -Newquay
- 18th October – Lincolnshire
- 27th October – Perth
- 14th November – Colchester
- 21st November – Birmingham – Young Person’s conference
The Welsh and Cumbria events are still to be assigned dates. If you fancy attending, or want to find out more, the Myaware website has information about conference season.
Yesterday morning I received a text from my mum with a picture of my dad preparing to ‘can rattle’ for Myaware. They both spent a good chunk of the afternoon fundraising and raising awareness by speaking to shoppers at Edinburgh’s IKEA. Despite TV show Empire bringing MG to a wider audience, this is very much needed as of around 100 people my mum spoke to yesterday only two had heard on MG. They did volunteering of their own volition – the text was the first I had heard about it – and to their own detriment. As they are both around 70 years old, they were suffering from the extended time spent standing on the shop’s hard floor. My mum is involved in the Edinburgh brand of Myaware and has been thinking about other ways of fundraising for the charity.
While this act of love and support warmed my heart, it also made me wonder about the potential number of people that could be reached if everyone with MG asked their families and friends to raise awareness about the condition. My mum’s text came alongside a visit from my good friend Marie-Claire, who kindly shared my blog on Twitter after our catch up. Again, she did this without me asking – as head of marketing and communications at leading children’s charity Aberlour she understands the power of word of mouth and endorsement. This is not the first time she’s done this – she’s been incredibly supportive and I’m lucky to have such thoughtful people in my life. But my mum and Marie-Claire are rare treasures who know intuitively how to help and support. Their acts made me think about the number of people in my life who would be more than willing to help, but who don’t know how to do so or just wouldn’t think of it.
Asking for help is the difficult part, as there are not many people who enjoy being vulnerable and burdening others. But I learned last year when fundraising for Myaware that people are generous and want to do their bit when given an opportunity. Would people be willing to spare a little time or a little space on their social media channels rather than a little money?
From my experience with Myaware, I have spoken to some spouses or parents of people with MG which is great. These are most likely the people like my mum and Marie-Claire. Think about how big the Myaware army would be if we gently asked others in our life to help.
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 firstname.lastname@example.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.