Aspiration to Fundraise for ME Research

The last 2 years I’ve been donating what I can in bits and peices to ME Research UK.  I was inspired by the Just Four Quid campaign in 2009-2010.

What I’d like to do is more to fundraise for ME Research.  I think research is the key.  Research and trials can bring better clincial understanding, diagnostic tests, treatments and maybe even a cure.  These in turn can change the way patients are considered by doctors, employers, insurers, the media, drug companies.

But on my own I can’t contribute a lot of cash.  I also can’t go running marathons or doing epic challenges to inspire donations. So I need to think creatively.  And I have a hope that if I can think of creative ways to fundraise maybe it will inspire other people with limited means too.

My plan for the last 6 months or more has been to cook up some fundraising scheme/event that I can announce for International ME/CFS/FMS Day on May 12th 2011 which also sees the end of my current year of donating what I save in a Just Four Quid model.

One of the problems is that not only does ME and life whilst juggling symptoms/crashes/flares impact on what I can do for a fundraising event it also limits my ability to plan and organise that event.  Plus I have to find something really catchy and find ways to use social media to engage people because I can’t knock on doors or bounce around the streets. I’m even relectant to use traditional media because the energy to be presentable and cohorent for journalists is kind of tricky (although maybe I can utilise a husband who knows how to wrtie for papers).

So major sticking point at the moment is The Event.  I could choose to organise an event that other healthy people participate in but that would be a lot of organising and a big commitment. So for now I’m thinking some kind of novel sponsored event I can do myself.

I did consider doing a physical marathon by walking a little bit of it every day. then I did the math. Gulp.

A marathon is 42195 metres. Let’s suppose I manage to walk 50 metres at a time which is about my limit of walking unaided so probably pushing it a bit. That would require 844 days. I’m not going to be walking every day because sometimes I’ll be too ill and sometimes I’ll need my energy for other things so say I do an average of 4 days a week. That would mean it would take me 210 weeks, or 4 years to walk a marathon!  I’m not sure anyone would stick around to be engaged in my fundraising event for 4 whole years.  And I have to tell you this calcualtion really knocks the wind out of me because I realise just how far away from a healthy fit person I am. Yikes!

So no marathon on my own two feet. I do quite like the idea of doing a marathon with other people helping me. To be pushed in my wheelchair for 26.2 miles by a team of volunteers perhaps over the course of a month during the summer.  It would still be a demanding event for me because being up, ready and going out is a big deal energy wise plus being along for the ride (with a variety of pushing approaches and speed!) and also engaging folks to fundraise also has to be factored in. But much more achievable than doing it myself!

By recruiting volunteers to push me I’d also be attracting more interest as hopefully each of those people would tell a few folks about their involvement.  Plus they could choose where they want to do their mile(s) – be it around my local streets, in a park, cross country (ouch), in a shopping centre, a circuit of a gallery … it could be anywhere!  It could be midday, at sunset or in the dark.  And I could take photos, maybe video and share the journey online.  Share it as an adventure.

OK so it does kind of sound like I have a plan!  But it needs some refining and I need to think it through.  I’d have to set a limit to how many miles I could do in one day and how often I could go out – but keep the schedule tidy enough to make it appealing to potential donors and easy enough for volunteers to get involved.  I’d also need to have some guidance to give volunteers on pushing the wheelchair.  I know my dad’s style of pushing is very different to my husband’s for instance.  My husband pushes me very carefully – my dad goes for speed.  Both are good in their own ways though speed is a bit more tiring as I have to fight not to get catapulted out the chair!

If I cast my mind around I can think of 3 or 4 people I’m sure would volunteer and I suspect others I know through Twitter might be happy to get involved if I make it easy and fun.  It might be that if I can iron out the details and announce it other people with ME who want to fundraise for ME Research UK might also do their own pushed marathons.

It’s not quite as quirky as I’d first imagined I’d aim for.  But then I don’t have to limit my fundraising to one event and I hope to do more over the year.  But it is potentially something that could capture interest if I market it well enough. And it does seem I have a lot more in my brain ready to go than I realised when i started writing this blog post! I need to start proper planning. I have less than a month to firm up my plan and start recruiting/marketing if I want to announce it for ME Awareness Day. Gulp.


UPDATE: Having one some thinking and planning it really is a massive commitment. It would mean an outing just about every other day for a month. Gulp. Still doable but would surely take a toll. So I’m also considering the idea of doing a big push (literally ha ha) and getting people to relay push me a marathon distance over a weekend. It takes one person about 8 hours to walk a marathon with comfort breaks. Four hours a day over two days sounds achievable albeitwith  a calculated crash afterwards andweeks to recover possibly. Need to think some more to decide which is the best approach.


4 Responses to “Aspiration to Fundraise for ME Research”

  1. 1 ashy March 16, 2011 at 7:53 pm

    Wow that is a big undertaking but I like it!

    Made me think about the awareness value of a joint marathon event, where pwME sign up to walk as far as they feel able on a set day, and them go online and record their distance and how long it took them and any other comments. As you say, to get to a marathon length would take a huge number of little walks and to record the experience of The participants and how hard it was would really hammer home how far from well we are. The participants might not add up to a marathon as that would be unpredictable, but surely the stats would be fascinating and powerful? Even a short wheelie walk can be exhausting so this could count too. It would need some publicity or no point… what do you think?

    • 2 rachelcreative March 17, 2011 at 5:28 pm

      Yes great idea but at this stage a bit too much in terms of organisation. We’re talking needing to recruit either 600-1000 people to all do their mini walk around the same day. Or say a quarter of that number to do mini walk 4 times maybe. Even so that’s a lot of recruitment, a lot of guidance for participants and co-ordinating sponsorship plus publicity.

      Certainly not something that’s easy for an ME person to take on board. In some ways it would be easier to organise an event that healthy people participate in for the ME people they care about but even that would be a big undertaking.

      I know you’re not suggesting I be the one to do it by the way – I’m just concious of taking on only what you can keep within your own control. I’d be happy if other people took up a similar idea to me – even if they recruited 13 mates to each walk 2 miles on their behalf perhaps. But a mass participation event is something further down the line or for someone with a lot of energy and preferably contacts!

      Look at something like the Sock project – it’s a small effort for each person with ME to make but they’ve perhaps not had the response you would expect and the organisers are exhausted and looking for someone healthy to take over coordination.

      So I’m going to stick with marathon ideas where as an individual you can predict your ability to pull it off – like 26 days doing something, or 26 minutes of something, or 26 friends doing something. That sort of thing.

      As for my push marathon idea I’m leaning more and more towards doing 26 miles over a weekend, than spreading it over a month which I think would be too much to commit to in terms of being well enough to make each appointment to do a leg. For a weekend I can plan towards it better even if it would be really intense. Plus it means I could do this with the help of 4 people if they were all available which is suddenly really practical. Been playing with google maps today to find a local interesting circuit that we might use.

  2. 3 ashy March 19, 2011 at 12:47 pm

    Yes I agree with you, and was not suggesting either of is take it on, just bouncing the idea. One idea leads to another quite often…

    I think your weekend of being pushed will be exhausting but also fun! I agree is it much more manageable to organise. Maybe you can go through busy shopping streets and raise some awareness/cash as you pass through. Dress up that wheelchair!

  1. 1 Push Me! « ChronicallyMe Trackback on April 7, 2011 at 3:02 pm

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Push It 11 Sep 2011

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