The third speech in my 3 week, 4 talk period went down really well at the CF Trust fundraiser 1 in 25 Ball at Wokefield Park near Reading.
The full text of my speech, as delivered, is below.
It’s an amazing place, Wokefield Park. You arrive on a long driveway through the golf course, which is lovely but somewhat reliant on them only allowing 10-handicappers on the course, I’d hope. As you approach the hotel, the first thing you come across is the big conference/exectutive centre, which presumably doubles as the club house, too. It’s an odd looking building that’s not unattractive but doesn’t exactly wow you upon arrival. Instead, it’s more of a run-of-the-mill hotel and conference venue in really, really nice grounds.
Having been inside to check in, I’m told we’re actually staying in the other section of the hotel, the Mansion House, where the ball itself is taking place. So we jump in the (new) car and head over to the other part of the grounds, where we round a copse of trees to discover the most beatiful period mansion I think I’ve ever stayed in. With a newly-refurbished and stylishly modern interior, it’s a perfect marriage of old architecture with 21st century functionality.
The bedrooms are something else – huge beds, loads of room and, best of all, a proper rainfall-head shower that I could have stayed in all weekend it was so gorgeous and refreshing.
The ball itself went exceptionally well – we were kindly put on a table of hugely friendly people who made us feel welcome in a room full of 120+ total strangers (save for Jenny, the CF Trust Regional Fundraising Manager who had invited us down). After a slightly cocked-up (time-wise) but delicious dinner, I was given a really quite lovely introduction, cribbed mostly from this blog and the CF Trust’s website and delivered my short speech.
After dinner there was the usual auction and raffle, followed by a brilliantly organised casino of Blackjack and Roulette, where guests could make a donation of £10 to the Trust in return for $100 in play money. Then when all was said and done at the end of the night, the chips were cashed in and the top 5 walked away with a prize.
I spent a little time teaching K how to play Blackjack and nearing the end she spent a lot of time trying to lose all her chips so she could go to bed and ending up actually winning more back. Riding our luck (and knowing that we were far from chip leaders, so seeing no point in diligently saving our meager stack up), we decided to switch to Roulette, which I usually dismiss as a mug’s game.
As it happens, through a careful system of hedging my bets I was a fair bit up coming into the last 5 minutes. Soon, though, it started to dwindle as I got over-confident and bet stupidly, although I suppose that betting in general is an intelligent thing to do, which is a concept many may struggle with. With one spin left, I had eight chips, so to make it exciting I put half on Number 11 (the hottest number of the night) and one on 25 (a number I’d bet near or around several times and lost out on) and with the final spin of the night, the ball dropped in 25!
Much to my amazement, after cashing out, I found myself landed up as the 3rd place chip holder and the happy winner of a lovely case of Spanish wine from the oldest vineyard in Spain. Not bad for a random guess. It’s quite easy to see how addictive gambling could get in those situations, though, so I’m not dashing off to Vegas to get stuck in for real just yet.
After the casino packed up and as the band were hitting their final numbers, we both called it a night and headed to bed, exhausted from the day’s activities.
Here’s the full text of the speech I delivered to the ball guests:
“Good evening, Ladies and Gentlemen. Thanks for having me here tonight. I’d like to thank the organising committee for what has been a great night so far and I’m sure is only about to get better. I’d also like to thank the sponsors of tonight’s event. I wanted to mention you all by name but so many people have been so generous in support us tonight that it would take me all of my speaking slot to go through you one by one, so instead I’ll just offer up a very big and – sorry – generic thank you to everyone who’s helped us to make sure we’re in profit already before we even tackle the auction, raffle or casino. So thank you.
I do this kind of thing quite a lot for the CF Trust. It used to be really easy. Before I had my transplant, I’d turn up at these events dragging an oxygen cylinder behind me – I was on 24-hour oxygen – and looking terrible. I was incredibly skinny, I had really pale skin and horrible, dark rings around my eyes. I’d just stand at the front of the room and say “Look – it’s rubbish” and people would feel sorry for me and pledge loads of money.
Now I’ve had my transplant it’s a whole different ball game. I stand in front of people and say “it’s rubbish” and they think, “It can’t be that bad, he looks great.” At least, I hope they think I look great. But I feel great, I feel better than I’ve ever felt and it means that when I do these events now I actually have to think of something to say!
The CF Trust is very important to me, as you may know. They’ve helped me through some of the toughest times – in fact, the very toughest times – of my life and been there for me throughout. Which is why I like to do things like this. Because apart from getting all dressed up and enjoying a lovely meal, I get a chance to give something back to them for all they’ve given me.
And the work that CF Trust is doing – the gene therapy work that tonight is helping to fund – is vital to helping make sure that people don’t have to go through what I’ve been through. If gene therapy works the way we all hope it’s going to work, it will remove the need for transplants by stopping the lung damage that proves fatal to so many people with CF. It will – hopefully – help to ensure that children being born with CF today have a much better chance of a much longer life than I will ever have.
I consider myself very lucky to have received the gift I did. When I do events like this and I start talking about luck, I always come back to the same story – the story of my friend Claire. Claire was a slightly odd friend in that she was, in fact, an oxygen concentrator. A portable oxygen concentrator. And she was something of a good luck charm. She originally belonged to a friend of mine called Emily, who had a successful double-lung transplant in January 2007. Once she’d recovered, she realised she had no need for Claire any more, so she passed her on to me and, six months later, I received my transplant. Once I’d recovered I, in turn, passed her on to a friend of mine called Sam.
Now, the thing about luck – as I’m sure you’ll all find out later when you hit the casino – is that it runs out. Last year, when I was celebrating my 26th birthday – a birthday I never through I’d see – Sam lost her fight. She died. And no matter how many times I tell this story, I still find it really emotional. Because it’s hard. The reality of the transplant list is that if you’re waiting for double-lungs you’ve got a 50% chance of getting them. Which means 50% of people die while they wait. I realised just last week that I’ve actually known more people who’ve died on the list than who’ve had a successful transplant.
And 50% is quite a good statistic to look at. Take a look around your table now – 50% equates to every other person on your table dying. That’s too many.
And that’s why the work of the CF Trust is so important. The gene therapy research that they’re doing will remove that element of luck from the lives of everyone who has CF. It’s not a cure, but it will work to prevent the lung damage that puts people in a situation where they face such bold statistics.
We all want you to enjoy yourself this evening, we want you to have fun. But we also want you to remember that you’re hear for a reason. You can help the CF Trust remove that element of luck from peoples lives by digging deep and bidding big in the auction and enjoying the casino.
Have a great night, thank you.”
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