The countdown has started!

Well, we’re into May and it’s less than a week to go until Cystic Fibrosis Week. All of the planning and preparing has been done – it’s time to go for it! I can’t help thinking that the Royal Wedding seemed to be a huge success and they had a similar run in time to us, so Cystic Fibrosis Week should be just as huge – I don’t think I can persuade anyone to let us have another bank holiday though! I have booked sunshine for the week so I hope that comes off :)

We had a fantastic long bank holiday weekend with street parties and barbecues, one of my friends, Sara, wore my wedding dress for most of the day, every party should have a princess – obviously I would have put it on if my hair was styled more like Kate Middleton’s, it had nothing to do with the fact that I may have put on a little weight since 1990 when I wore it for real!! The boys both did their paper rounds and there was much grumbling about the size of all the colour supplements that had to be folded carefully and put through letterboxes – no day off for them!

I think we were all ready for a return to normality when Tuesday came around, but Beth had another day off school as it was clinic day up at Great Ormond Street. She went off with her dad Graham and all was well, she had grown a little and her weight was up too, lung function was as expected so we just need to keep on doing what we’re doing for now. She stopped off for a Nando’s treat on the way home and then polished off teacakes and Easter egg as she walked in the door – no wonder her weight is good at the moment. Here's a photo of her above enjoying her dinner!

We’ve got a busy weekend ahead planned too – it’s my nephew Sonny’s third birthday so Saturday is party day; I’m making the cake, a pink number three, I’m sure he’ll grow out of that colour choice fairly soon! Then on Sunday it’s the bluebell walk at Ashridge Forest near Berkhamsted, Herts and Cystic Fibrosis Week kicks off! There are loads of people already registered for the walk and fundraising hard, it looks like it will be a bumper year for walkers. We’ve got nurses from the local hospital, friends, family, and lots of people living with Cystic Fibrosis in various ways. If you want to join in, it isn’t too late; you can register on the day. Just let me know that you’re coming along so I can make sure there is a Danish pastry and a bottle of water ready for you at the half way mark! You can drop me an email about this event, or any others from our website at cfweek@cftrust.org.uk

If you can’t make it to an event during Cystic Fibrosis Week then why not show your commitment during the week by signing up to an event later on in the year, there are loads to choose from, many are on our website www.cftrust.org.uk Now is the time to change your profile pictures on Twitter and Facebook too with our special Twibbon, it’s easy to do, even my mum has done hers! And get as many people as you can to ‘like’ our Facebook page and follow us on Twitter, spreading awareness is as important as raising funds during our special week.

I’ll drop you a quick line over the weekend, but for now thanks so much for all your support and kind words - Cystic Fibrosis Week is going to be a blast!!

Nikki x

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 cfweek@cftrust.org.uk 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 www.cfweek.org.uk 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!

Love

Nikki x

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 www.cfweek.org.uk or email cfweek@cftrust.org.uk 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.

Love,

Nikki xxx

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.

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Speak soon,

Nikki x

Spring has sprung, the Samsas go bowling and CF Week is just around the corner

Hi again, thankfully it finally feels like summer is on its way, the grass has been mowed for the first time this year and the trampoline has been cleaned down ready for extra physio and fun over the coming months! We bought the trampoline a few years ago thinking it would be a great way for us all to keep fit and might give us all a night off ‘normal’ physio every week – Beth broke her ankle on it after three weeks – sometimes it seems like everything is against you!!

The whole Samsa family went bowling last week, a local carers group put on an event and invited us along, they recognise that sometimes it isn’t only the child with Cystic Fibrosis that needs a break and a bit of support, siblings are affected too. The helplines at the CF Trust (Tel: 0300 373 1000) can offer advice and support for all the family when things gets too much, often putting you in touch with other local networks. I’d forgotten what fun bowling is, competitive mum appeared but it was worth it to beat Harry and Jay in the first game – I lost the second one, badly….

Momentum is building for Cystic Fibrosis Week (8-14 May) it really is going to be a great thing to be involved in this year. In Dunstable we’ve got our annual Bluebell walk in Ashridge Forest, Graham is organising a small golf day (an excuse for a day off work I reckon) and the Nannies are doing a Big Cake Bake, I’d love to hear what you’re planning, maybe I can help? You can email cfweek@cftrust.org.uk The events are coming through thick and fast onto the website now, www.cfweek.org.uk it’s keeping Nigel and Steve, our despatch team, really on their toes getting all of the fundraising materials out.

Catch up again soon,

Nikki x

Nikki hijacks the blog!

Photo: Beth and Jenn after destroying Nikki's kitchen!

Hi I’m Nikki Samsa and for the next few weeks I’m going to hijack the CF Trust blog! This first entry is a long one, with a bit of background; I’ll try not to bore you too much over the coming weeks though!

I work, full time, as a fundraiser at the CF Trust, supporting lots of people like you to raise money for our favourite charity. Living at home with me are my husband, Graham, our three kids, two boys and girl, Harry (17), Jay (14) and Beth (10) and a dog, Ollie. Beth has CF, the reason we all got involved with the CF Trust in the first place.

Part of my job at the CF Trust is to work with lots of the other staff on Cystic Fibrosis Week which runs this year from 8-14 May. Over the next few weeks I’m going to share some of the background of the campaign and the ups and downs of how it all progresses.

I’m also going to chat about living and working with CF, and the realities of having kids, working full time, fundraising, socialising, medication, dog walking, exercising and trying to fit in life in general!

Two of the highs at work of this week were that the CF Week microsite went live –yay!! It could still be it bigger and better so please let me know of ways we can do this by emailing us at cfweek@cftrust.org.uk. We chose five people living with CF to be our faces of the week and they are all amazing – have a look and see their stories at www.cfweek.org.uk The regional newsletters were finally posted….after agonising over whether we had put all of the information that you would want to see in there we pressed the button and they were sent out. Along with the hard copy mailing we trialled sending the letter out via email to anyone we had email addresses for – this saves us money so I hope you don’t mind receiving an email rather than a mailing through the post. There were a couple of teething issues doing it this way but there always is when you do something for the first time – just ask my Harry about all the mistakes I made with him!

At home it was Jay’s birthday so we had the usual birthday evening with extended family round for pizza and pasta. It was a rowdy and noisy affair, as it can be when the age varies from my two year old nephew to Great Nanny who’s 90! Beth and her friend Jenn had made the birthday cake the night before; I’m certain two girls have never made more mess (and then abandoned it for me to clean up!) It always makes me chuckle when all the family are round, the pills that come out in the evening for Granddad’s heart, Nan’s diabetes, Great Nan’s indigestion and Beth’s CF would fill many with fear – in our house it’s a championship to see who can swallow the most in one go – Beth always wins – six Creon at a time, she can’t be beaten!

I’ll write soon

Nikki x

Happy Birthday Tim!

We would like to wish Tim Wotton a very happy 40^th birthday! Tim has CF and has been blogging about his life over the past few months as part of his ‘countdown to 40’, talking about his view of the world, his struggle to become a father, his experiences with CF and the power of positive thinking amongst other subjects.

Thanks for sharing your experiences Tim and enjoy your celebrations today with your family. http://timwotton.wordpress.com