Why I Wanted to Help : The Importance of Donors and Fundraising.

Me, looking stupid.

Hi, this is Josh at Lungfest here.  That’s me above, looking stupid.  Where possible I try to post photo’s of myself where I’m intending to look stupid.  The sad alternative is the photo’s where I look stupid without intending to.  This is by far the best option.

Having offered my help with Lungfest I thought it would be worthwhile to mention why. It’s not just the positive message, the idea of saying ‘Thank You’ that I loved so much. It’s the whole of everything that goes along with raising awareness and funding. And it applies to everyone who raises money for charity, and in particular the C.F. Trust.

First, awareness; the reason I feel this is so important is because up until 3 years ago I was one of those people who wasn’t really aware. I was diagnosed in 2012. And until then it was just a confusing couple of words with some complicated combinations of consonants that sounded kind of rubbish. Of course now I know how rubbish it is, not because I’ve suddenly developed the condition, but because I’ve just found out I’ve had it all this time. Then as my own knowledge increased I understood even more; how “lucky” I am to have a relatively mild form of C.F. The strange luck, if it can be called such, to not be diagnosed until I was almost 30. Then you hear of other stories, people who have double lung transplants and all the associated risk of saying “yes, crack me open and pop some more in. And this time I want them gold plated!” I’m sure, of course, that the discussions are more technical than that.

Lungfest

I’d had lung problems before, but for whatever reason they never got as far as those two capitalised letters that mean so much to me and so many others now – C.F. After a bout of T.B in 2009 (I say bout like we had a boxing match, but mostly I was lazing around sweating orange) I was back to see the same clinician 3 years later. There was more exciting stuff in between but I won’t go into that. He told me I had M. Absecessus then chuckled at how unlucky I was in managing to catch such a rare infection so shortly after TB. I felt the chuckling was a tad rude, even as I chuckled along, but then he was busy saving my life so I let him off. I did laugh a little harder when he got the angle wrong and almost fell off his chair when sitting down at the following appointment however. Then I got an entire backpack full of multi-coloured pills and he sent me on my way. I’m pretty sure he checked his chair was in place before he sat down again though.  Anyways, I digress.  That photo at the top is actually me, on the day I finally finished the 18+ months of treatment for M. Absescessus.  I was partying like it was 1999, in that one tiny glass of Champagne was enough to make me quite excitable.  I hadn’t had a drink for quite some time.

The point was it was then, at that meeting with the nice Dr who didn’t sit so well, that I found out about those two words; cystic fibrosis. I feel like it should be easier for other people to find out about them too. It should be just as easy for people to then see why helping is important and alongside that why being a donor is such a fantastic thing to do. If the box just said “do you want to save a life?” how many people would add themselves to the donor list tomorrow?

Funding made easy.

The raising of awareness leads to the second reason I wanted to help; funding. The two link so closely together with C.F, and that’s a message that’s so important to convey. You see funding is to find a cure, and the awareness is to tell people who don’t know just how very close we are. The good people at the C.F. Trust, our doctors and health professionals around the world have worked together so that you can see the results. In around 10 years the average life expectancy of having C.F has increased by 10 years. If this carries on we’ll be wheezy little octogenarians in another 40 years time! When I’m old, I for one intend to make up stories about how I was shot while saving puppies during the war. I’ll leave it up to the people I’m telling the lies to work out which war.

With great news like the progress of Wave 1 trials, the possible added benefits of Wave 2 research and its continued funding, and all the other advancements like the approval of Kalydeco you can see why it’s so important. We’re maybe not quite at the line, but it might just be around the next bend if we’re just willing to keep on jogging. Of course that’s an awful analogy for C.F. Let’s just assume we’re the guy on the motorbike filming the race instead. I’m probably eating a chocolate bar as we drive past the runners. I’m probably smiling.

All joviality aside it’s our fight after all. Most of us are fighting it every day anyway. It’s just nice to work together, and all help together sometimes. Even if we’re not allowed in the same room.

So anyone who can help I’d urge you to do so.  Whether you can organise an event for Lungfest itself.  Whether you can simply tuck a bit of money away in the Just Giving set up by Dane, whatever you’re able to give.  Or heck, if you’ve not done so already, or even if you’re not entirely sure, please take the 30 seconds to sign up for the donor register.  30 seconds to save a life?  That’s not a bad deal.  If you want, I’ll even let you pick your own superhero name.  Everyone wants to be a superhero, right?

Be a superhero!