Welcome to my first Cystic Fibrosis Week blog! I’m working hard to tell lots more people about the vital work of the Cystic Fibrosis Trust to help people with CF live longer, better lives.
I’ve been a patron of the CF Trust for a good few years now and I’ve been lucky enough to meet lots of remarkable young people living with CF. I’m always amazed at their positive nature and strength. Like Kerry Thorpe - she’s awaiting a lung transplant and yet still finds time to keep people up to date with her blogs and news as well as fundraising. Kerry is truly inspirational.
One thing that always strikes me about CF is that it affects people in so many ways. Like Bea who was diagnosed in her 30s, when her own Son was found to have CF at birth. What a challenge that must be, Mother and Son both with CF.
Meeting lots of different people with CF has inspired me to get involved and raise funds for the great work of the CF Trust. This year I’m joining RAF Brize Norton in their World Record Attempt for the largest number of people on Space Hoppers on 2 May. I can’t wait to get bouncing and there’ll even be a live link to the troops in Afghanistan! And I need to remember my ear plugs as I’ll be joined by the amazing Brian Blessed.
I know there’s loads of things going on during the week, from multiple Skydives, Big Cake Bakes, charity walks and much more.
I know by joining in the fun, I’m raising vital funds for the CF Trust to help find a treatment and support the best clinical care.
It’s me again! This up and down weather is keeping us all on our toes – I’m keeping everything crossed that it stays fine for the end of the month! I know the weather plays havoc with keeping bugs under control for some of you – we’re in the middle of a couple of weeks of IV antibiotics for Beth; at least we’re getting them out of the way before the week starts!
You’ll see on our website www.cfweek.org.uk the story of James Wojda; he loves his sport and is aiming to cycle from Land’s End to John O’Groats later on this year, quite an inspiration for people with or without Cystic Fibrosis. If you’d like to share your story in your area drop us a line at firstname.lastname@example.org and we’ll see what we can do to help.
I mentioned that we have a Bromley Big Cake Bake happening on 2 May, well Steve and Nigel our facilities team are fundraising this year. They are selling parking spaces! Usually our staff can park for free at work, but not in CF Week – they won’t get through the front door without making a donation, why not try this at your office…
Or if you’d really like to raise some awareness we’re also spending an afternoon experiencing the reality of cross-infection. No one in our office can speak to each other face to face. Everyone has to use the telephone, text, Facebook or Twitter – if they need a meeting, they’ll have to hold it outdoors!
Catch up again soon, don’t forget to let me know what you’re up to!
I hope you’ve all been able to enjoy some of the beautiful weather we’ve been having over the past week; I’m keeping everything crossed that it stays around for Cystic Fibrosis Week!
I’ve been hearing about a lot of your plans for our national week of fundraising and awareness – you really are an inspirational bunch! Talking of inspiring people you might like to read some of the amazing stories of people living with Cystic Fibrosis on our Cystic Fibrosis Week website; people like Bea and her son Alec. Bea was diagnosed with CF when her son was born and she is helping us promote our ‘free wills’ campaign (http://www.cfweek.org.uk/get-involved/free-wills)
Our Head Office are running a Bromley Big Cake Bake on Wednesday 2 May so please pop in and say hello if you’re in the area – we’d love to see you! Many of you have also decided to raise funds through tea and coffee mornings, there are many materials available on the website, and it’s a great excuse to get together with friends and family.
As for me; I’ll be jumping out of a plane on Friday 5 May along with my sister and my eldest son. I keep thinking it will be fine and that I’m looking forward to it and then I realise what is actually involved and I start to panic slightly! Do let us know what you will be up to during the week: email@example.com