Thursday 28 April 2011

It’s almost here…..

I usually work from home and spend a lot of the day on the computer or the phone, but every so often I venture out of my virtual world and work with real people for a day! I met up with some local supporters this week, they are helping to organise a Great Strides Walk in Ashridge Forest, Hertfordshire and a Big Cake Bake in Dunstable, Bedfordshire during Cystic Fibrosis Week – they have a direct family connection with Cystic Fibrosis, as many of our fundraisers do – but are so excited to be supporting the whole CF community. Cystic Fibrosis Week has really brought so many people together throughout the country – all fighting for the same thing! It was fantastic to spend a few hours with them, ordering them some materials to help raise extra awareness on the day and chatting through some ideas for types of fundraising – meeting so many great supporters is why I love my job!

It has been amazing to see so many of your events and ideas coming through in so many different ways, we’ve had emails to and the team are replying to each of those individually, let them know how they can help – we need to keep them busy!! Many of you ‘like’ the CF Trust on Facebook and we are hearing about a lot of events that way; the number of people following us on Twitter is also growing and hopefully #cfweek will start trending with more of you tweeting about your Cystic Fibrosis Week plans!

I spent a day down at the Head Office in Bromley too this week – I have been allowed out a lot just lately – many of the staff have signed up for one of the collections so if you are in the neighbourhood pop along to Victoria Station on Monday 9 May or Bromley High Street on Friday 13 May. Toby, our designer, is finalising some posters for the front windows to advertise the Big Cake Bake – he’s started seeing Cystic Fibrosis Week colours in his sleep – have a look at the website as he is also uploading short video clips of our five faces of the week at the moment – they really show how inspirational people with CF live life to the full every day.

My family are all getting ready to do their bit for the week, Graham has a few more teams for his golf day now, he’s going to see how many donations he can get towards funding the helplines for a few hours, his plan is to buy a couple of rounds of beers, after a round of golf and then do the asking! Harry and Jay, as teenage boys, aren’t very good at fundraising (yet!) but they have loads of friends on Facebook so they are going to get all of their friends to like the CF Trust – all the awareness helps too! And Beth and I will be baking cakes galore, I’ll take some down to Bromley and the rest will go on the local stall – well if those teenage boys don’t get to them first…..

Look forward to hearing from you all soon!


Nikki x

Thursday 21 April 2011

CF Week is fast approaching!

Oh No - it's only three weeks away!!

I went to send an email around the office to find out what all of the staff have planned for Cystic Fibrosis Week (8-14 May) and suddenly realised we only have seventeen sleeps until the 8 May! Slight panic was setting in, have we done enough, has everyone got everything they need, will anyone take part or will it just be me running around like a headless chicken trying to get donations from people!! But I shouldn't have worried - the CF Trust staff and of course our supporters are an amazing bunch and many of them have things planned, we've got, car boot sales in Cornwall, walks in Wigan, bucket collections in Bromley, skydives in Scotland - its great to know that everyone is supporting the campaign, throughout the charity and across the country. Even the CEO, Matthew Reed, is collecting at Victoria station on Monday 9 May, so feel free to pop along and say hello, or help out with a bucket for an hour or two.

The CF Week team would love to hear what you have planned - visit or email with your stories. My family and friends are planning lots, I'm encouraging, not bullying, them into it! We have a bluebell walk on 8 May, golf day on 11 May and a cake bake on 14 May - something for everyone! Feel free to join us, all of the details are on our website.

The Samsa gang plus extras went down to the London marathon last weekend, how amazing to see so many people running to support all of our 220 Team CF runners. I was a terrible mother though, I have to confess. We had set off from home at 6:15 and we arrived at Tower Bridge at about 8am. Beth wanted something to eat so set off to the closest Starbucks, when she got back I realised I'd not got any Creon with me! What a disaster! Thankfully a lovely CF granny turned up to cheer on her family and had a pot in her bag - completely against all NHS guidelines I'm sure, but we did a drug swap at mile 12 of the marathon route! I left Graham, Harry, Jay, Beth and a crowd of friends and CF Trust staff cheering on until about 2pm when the course was being cleared and went on to the post run reception. Such an emotional day meeting so many runners including a few people with CF who completed the course. Totally inspiring! If you want to sign up next year the ballot opens on Tuesday, or join us cheering on - its quite hard work, your hands ache afterwards from all that clapping ;) !!

I've got an extra day off for the Easter weekend now, need to get some sleep in before Cystic Fibrosis Week arrives, keep me posted on your plans, as well as any hints and tips on how we can make things better for next year. This year may be the best yet, but that doesn't mean I can't learn how to make things better from all of you!!

Enjoy the sunshine whatever you have planned.


Nikki xxx

Thursday 7 April 2011

Avoiding hospital and getting ready to cheer!

Well there was me thinking we were heading for a couple of weeks at Hotel GOSH (Great Ormond Street Hospital) – just shows you that sometimes mum doesn’t know best! Beth’s lung function had dropped a bit over our past two outpatient visits and I was convinced that there must be something nasty lurking – she has never been productive before and is now managing to cough up some nice mucus (if there can be such a thing as nice mucus!) But the lovely CF nurse, Charlie, came out to see us and did all her usual checks and two weeks of oral antibiotics had sorted Beth out – lung function was back up to normal and no iv’s were necessary – hurrah! Here she is in the picture doing her lung function test.

It’s not only me and Beth that are delighted with this news (although we do enjoy the forced girly time, hospital isn’t the best way to spend the Easter holidays) the team at the CF Trust were pleased too. It certainly helps working for an understanding company when you have CF in the family – the unpredictability of the disease means that sometimes home life takes over, quite rapidly and without warning. I don’t think that the team were pleased that I, in particular, was going to be around – my bossy ways can be quite demanding – but leading up to a big campaign like CF Week is full on, for everybody and the more hands on deck the better. We have a lot of events happening at Head Office this year, it’s lovely to know that all of the CF Trust staff (not just the fundraising team) get involved in fundraising for families like ours, they are such a committed bunch of people. Have a look at the website to see more details of some of the events happening in Bromley (our Head Office) if you’re local feel free to pop in to the Big Cake Bake, we’d love to say hello! Or pop in with some recycling, a perfect way to get rid of your old rubbish while raising money for our favourite charity! If you want help organising a similar event of your own just give one of us a shout.

The family are busy working out plans for getting down to London on Marathon day (17 April) we’re cheering at mile 12, Tower Bridge, it was great fun last year and hopefully the weather will stay fine again this year, great for us, not so good for the runners! Harry, Jay and I will be on the early train, I have to bribe them with the promise of a bacon sarnie, Graham and Beth will follow on once all of the morning treatment is complete, mind you I reckon yelling at CF runners for a few hours must count as some physio! Maybe we’ll see some of you there.

You can subscribe to this blog using RSS and a feed reader. Some popular feed readers include FeedReader , My Yahoo, Bloglines and Google Reader. Once you have your reader you can subscribe to lots of different blogs and websites simply by adding a feed and typing in the website address. Then all your favourite blog and website updates will be in one places for you to read. You can get more info from

Speak soon,

Nikki x