Ceri's 40th

Ceri is celebrating her 40th Birthday on 11.11.11 and is entering a national dance competition to celebrate. Find out more at:


www.cerifabulousat40.blogspot.com

Gene Therapy – Latest News: August 2011

The Appeal to raise the funds for the gene therapy trial due to commence in spring 2012 is well underway. In this update you can read about progress of the Appeal so far, and find out about some new ways in which people can lend their support.

Where are we now?

We have been thrilled and humbled by the response to the Gene Therapy Appeal from our community supporters. We hope you will be as encouraged as we are to learn that over £200,000 has been donated by the CF community alone since our Appeal started. This figure excludes gift aid which could add a further £50,000 to this total! We do appreciate all you have done to support this Appeal - thank you. Below we've listed some of the ways in which people can continue to support our campaign, including the new, simple text donation service.

What are we doing to raise the money?

£6million is of course a huge amount to raise, and we are not expecting the CF community of friends and supporters, many of whom are living with Cystic Fibrosis themselves, to raise the full amount. However we're hopeful that the CF community will help us to raise £1million towards the £6million total by October 2011 - we're already well on the way!

We anticipate that the bulk of the funds raised will come from major donors, trusts and corporates sympathetic to our Appeal, and we have already made several major gift requests the outcomes of which are pending. We hope that the support you have already shown will demonstrate the groundswell of support behind the Appeal and galvanise the major donor appeal. Obviously securing major gifts does take a significant amount of time, and we will update you on this in due course.

In addition we have applied for a significant grant through the Medical Research Council (MRC). The outcome of this application won't be known until October, however we were extremely encouraged to learn in July that our grant application has passed the first stage of review. We will of course let you know as soon as the outcome of this is known.

How you can help

There are many ways in which you, or your friends, family or colleagues, can support the Gene Therapy Appeal. We do appreciate all you have done so far, but would value any further support you can give this Appeal:

- Visit Virgin Money Giving to donate online.

- Donate quickly and easily via text: simply text GENE06 £5 to 70070 to donate £5 or GENE06 £10 to donate £10 to the Appeal (all text messages are free on all networks).

- Why not ask 6 friends, colleagues or family members to support our £6million Appeal?

- How about organising a coffee morning, jumble sale or fun day to raise funds for the Appeal? Get in touch with your Regional Fundraising Manager who will be happy to support you.

Thank you for all you are doing to support this Appeal. We are hopeful that together we will make the clinical trial happen.

A message from our patron Ben Shephard

Hi everyone

I decided to get in on the act and help raise awareness during Cystic Fibrosis Week. I’ve been tweeting about some of the fundraising you’re doing and trying hard to reach lots more people with news about the work of the Cystic Fibrosis Trust.

I hope you’ve enjoyed reading the blog posts from the faces of Cystic Fibrosis Week. 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 young people living with CF just like Aaron, Cassie, James, George and Sam. One thing that always stands out for me is how determined and positive people living with CF are, despite having to do so much treatment every day just to keep well.

Meeting lots of different people with CF has inspired me to do my bit to raise funds for the great work of the CF Trust. I’ve run London and Tresco Marathons, played in charity rugby and football matches, and last year ran 5 marathons in 5 days! That one was a killer! For some reason we've agreed to do it again this year but now is 280 miles in 7 days so wish us luck!!!

I'm also doing the 3 peaks in June with a good mate Oli Lewington who I met running the Tresco Marathon three years ago. Oli has CF and has also received a double lung transplant so it's a massive challenge for him but he typifies the spirit of all the guys with CF that I've met.

They're the reason why I do all this. To try and ensure that they get the best clinical care and treatment, get the right support during their life, and that we can continue to fund research into treating the causes and symptoms of CF.

If you’re reading this and want to do your bit too, think about making a donation at www.cfweek.org.uk and follow the CF Trust on Facebook and Twitter. I am really proud to be a part of Team CF and have no doubt this CF Week will be a huge success.

Cheers

Ben xx

Here’s a special blog post from Gwennan Jones, Deputy Head at Sam Roonan’s school.

Sam is much like most of our year 7 boys here at Warblington School in Havant near Portsmouth. He is talented, chatty, sociable, determined, competitive, inquisitive and sporty. Only unlike any other boy in year 7 or indeed any other student we have at our school, Sam has Cystic Fibrosis. The most important thing for us all here is that we remember the first way I described him and treat him for the vast majority of the time like any other boy in year 7…rather than letting CF dominate.

Just like any other year 7 student, Sam is unique. Warblington prides itself on its ability as a ‘small’ school (just over 650 students) to treat each and every student as an individual and Sam is absolutely no different. However life for us with Sam at school and life for Sam at school with us is more unique than most!

I knew very little about CF before Sam joined us in September 2010 and didn’t really realise or understand what we would need to do or how, to make sure that Sam enjoys his school days with us the same as all of his friends and has those amazing memories that we all have of secondary school, despite the complications of living and learning with CF.

So what’s school like for Sam from my point of view? If Sam is well enough, he comes to school and goes to his lessons that we have timetabled all on the ground floor. He is treated like any other year 7 and loves the challenges of all subjects including PE! He has a dedicated small medical room where his physio takes places twice a day when he is at school with either his teaching assistant (TA) or physio from home. Either a TA or one of his friends carries his bag and his oxygen tank between lessons. I communicate frequently either by telephone or e mail with Sam’s mum or dad to ensure we are all aware of priorities and issues that may come up.

If Sam is not well enough or if there is an increased infection risk at school, Sam works from home. Instead of sitting at a desk without interacting with his peers, we use Skype to fully integrate Sam into his lessons. Not long after he joined we realised that the Netbook he had been using at Primary school to keep in touch when he was medically unable to go to school was just not fit for purpose. Working closely with Sam’s mum Lisa, I put together a proposal to the Local Authority to fund a Macbook to enable high quality virtual interaction in the lessons via webcam. It is just brilliant! Sam can be transported into the classroom via webcam and projection onto the ‘big screen’. This means that Sam can do everything that any of his friends can do who are actually in the lesson from answering his name on the register, preparing a group presentation, class reading of a set text for English, undertaking a Science experiment to watching a Food Tec practical demonstration. Teachers ask him questions, he asks them questions. It is amazing! People that come in to see it are speechless at the way in which all the teachers are using it to make sure that Sam does not miss out on all aspects of school life. In fact, when I walked past my office the other day at break time, I had set up the Mac for Sam’s friends to Skype him at break time, so he doesn’t miss out on the socialising as well as the academic aspects of school. On screen was Sam with a yellow ‘post-it’ moustache and sat behind my desk were two of Sam’s friends, both with similar ‘post-it’ moustaches having the most amusing conversation. I couldn’t stop laughing…

Sam has raised the awareness of all of us at Warblington of CF. Our non uniform day this term will raise money for CF and Sam’s sister Josie and me are going to run assemblies for all year groups to continue to raise awareness with all our students. Although we never forget that Sam lives and learns with CF everyday, to us here he is an incredible individual who is able to make you smile at his mischievousness, divert your conversation with his intellectual and very carefully planned questions, and leave you in total awe of his resilience.

Living with CF - model Cassie Hawthorne

Hey!

I'm taking over the blog today, my name is Cassie Hawthorne, I’m 21 and I live in Stourbridge, in the West Midlands with my Mum, Dad, sister Carly and our unwanted guest Cystic Fibrosis.

I was diagnosed in 1989 at just six weeks old. The hospital where I was born were in the process of trialling a heel prick test and this is how I was picked up. I had no symptoms and for the first six weeks my parents, older sister, and grandparents were celebrating the new and what seemed healthy arrival.

At around primary school age I was always made aware of what Cystic Fibrosis was and how it would affect me. But being young and naive I just told people it made me have a cough and loved the attention that my classmates gave me for showing off my tablets and having days off to go to the hospital. It made me feel special and I enjoyed being different and that is still how I see it 15 years on. It is never something that I have been embarrassed about or ever tried to hide, this is me, and people can take it or leave it.

I was a patient at Birmingham Childrens Hospital and in 1998 aged 9 I was first admitted for a two week course of IV antibiotics. I don’t remember much about it just a lot of playing with other children, lots of chocolates and visitors, which at that age meant hospital to me was like a holiday.

I was then admitted another 5 times up until I was 16. On my last admission I was approached by a photographer who was putting together a publication on Birmingham Children’s Hospital. I was asked to appear in the brochure and depsite feeling very under the weather, and in my eyes, looking very worse for wear, I agreed. The photos were taken and published and before I knew it I was approached by a model agency.

Since then I have worked on major campaigns and have loved every minute. I love having my hair and make-up done, wearing amazing clothes, and forgetting about CF for a few hours whilst I pose!

I am lucky that I have kept fairly well as an adult with CF. From the age of 16 I began to realise and understand a lot more about Cystic Fibrosis and prepared myself for what problems I may face in the future. I took it upon myself to keep as fit and healthy as I could and this proved a success as I wasn’t admitted for another course of IVs until last year at age 21.

Keeping so well during these years meant I became a pupil at a top sixth form college, came out with 3 A Levels, all graded above a C, and fulfilled another dream of mine; to travel. I spent 4 months travelling Australia and spent Christmas and New Year on the beach, away from all the nasty colds and infections at home! I kept well, didn’t need any hospital treatment, and came back with a tan to die for….and very toned biceps after 4 months of lugging a suitcase full of meds around an area the size of Europe! As you are reading this

Having Cystic Fibrosis can be quite lonely, as you are not allowed to meet other people with CF. I have made a few friends with CF on Facebook and on the CF Trust message boards which helps as we can talk about what we’re going through, things that other people wouldn’t understand. I am really pleased to be one of the faces of Cystic Fibrosis Week as I want to show young people living with CF that if you keep on top of all your meds and physio, you can achieve your dreams and live life to the full.

You can get involved in Cystic Fibrosis Week by making a donation, sharing your story about living with CF, taking part in a fundraising event or organising your own, or helping to promote CF Week on Facebook and Twitter. Just visit www.cfweek.org.uk for more info.

Love,

Cassie xx

Living with CF - the Davison family

Hi there, I’m Sophie and my husband, Iain, and I are parents to two gorgeous boys, James, and George, who both have Cystic Fibrosis. Almost three years ago, when George was three weeks old, we were given the devastating news that both our sons had Cystic Fibrosis. The day before we were given the diagnosis James was admitted into hospital with pneumonia and was seriously ill. That day it literally felt like our world had fallen apart and couldn’t get our heads round the fact that our little boys had such a serious condition that would affect their lives forever.

Living with CF can be quite tough as it means constant medication and physiotherapy twice daily. At the present time, we are told that only half of those living with CF are likely to live past their late 30’s. Obviously this fact plays heaviest on our mind as we don’t know exactly how our sons’ lives are going to pan out.

After the initial shock of the boys diagnosis, I took on the attitude that if it is possible that my sons may have a shorter life than the average person, then I am determined to make sure that they enjoy their life to the fullest and to not waste any opportunities to have fun with them. One of the best things we like to do with the boys is to take them on holiday, as my husband and I see it as extremely important quality family time, where we can try and forget everything and just enjoy being with each other. Six weeks after the diagnosis came, we decided to go ahead with a family holiday that we had booked before George was born. My husband and I felt still felt quite nervous about it as we were still getting to grips with the new medication and physiotherapy routine but I think it was the best thing we could do. It was great to be able to have a relaxing and happy time together after all the hell of the past few weeks.

After that we haven’t looked back holiday wise! We have visited Spain several more times as we have a small apartment there. We also had a fantastic two weeks in Jamaica 5 months after the diagnosis. A month before we went to Jamaica we discovered that James had contracted a bug called Pseudomonas and James was have antibiotics twice a day through a nebuliser, but that didn’t faze us, we just packed up the nebuliser into our hand luggage and prayed that the airport didn’t stop us with us “suspicious” luggage!

The best holiday so far was a month long trip to Australia over Christmas 2010 to stay with my sister and her family. Once again, something major happened just before the holiday and James was again admitted into hospital with a chest infection and we did think at one point we would have to cancel our much desired trip. But the little fighter James is, he was soon well enough and after a bit of a delayed flight because of the snow, we finally made it down under! The boys had an amazing time and it was so fantastic for us all to spend time with our much missed family. We did fill an entire suitcase with medication (see photo!) as it was summer over there I think it did both the boys the world of good health wise, running around on the beach and swimming in the sea was excellent physio for them and when we got home they had both put on lots of weight and grown loads!

We are now planning our next trip, where to go now?! So, despite having CF, nothing is going to stop my boys, they may have CF but CF certainly doesn’t have them!

Thank you for reading and getting involved with CF Week. With your help James and George will have a long and happy future ahead of them x

www.cfweek.org.uk

It’s here!

After months of planning, Cystic Fibrosis Week has arrived and we’re sliding in head first with a big WOOHOO!

Everyone in the family is well, everyone has a t-shirt that fits and everyone has had a haircut ready for the photo (yes, the boys have had haircuts, believe it or not!). We're all doing our bit this week and we're ready for action!

Now it’s here, it feels like the fun can start. It has been a bit like planning a wedding and all of us at the Cystic Fibrosis Trust just want everyone to have a great time – oh and raise lots of money of course! There are so many events happening, all inspired by our five faces of Cystic Fibrosis Week – enjoy their new videos at www.cfweek.org.uk

Whatever you have planned I hope it goes fantastically well, you have an amazing time, you tell us all about it (cfweek@cftrust.org.uk ) and you come back and do it all again next year! Remember to keep looking out for our Facebook and Twitter updates this week, come back to the blog to read some guest blogs from the faces of CF Week and if you can't manage to organise or attend a fundraising event you can make a donation to our vital work here.

Thanks for reading my ramblings,

Speak soon,

Nikki x

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.

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 www.whatisrss.com

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

How much time have you spent on treatment?

When reading Tim Wotton's blog this week the following really caught our attention.

Tim reckons that over his lifetime he has swallowed 280 tablets every week, which works out at 14,560 a year and 364,000 over the last 25 years.

Also during this time, he's had 10,000 nebuliser sessions, 18,200 physiotherapy sessions, over 50 IV treatments, 600 visits to his chemist and 250 visits to Frimley Park hospital.

We all know CF is a very treatment-heavy condition to live with but these figures really pack a punch. How much time do you think you have spent on treatment over the years? How many tablets do you think you've taken? Do comment on Tim's blog and let us know.

Young, Deaf and CF

Afternoon all

We've just posted a great short trailer on our You Tube page. Film student Holly Cocker has made a documentary about a young man with CF, Pete Franklin, who also has hearing loss. The documentary follows him as he makes the decision whether or not to have a transplant.

Young, Deaf and CF has been accepted into the British Shorts Film Festival in Berlin this month. Keep up to date on the progress of the documentary on Holly's blog http://hollycocker.tumblr.com/, the film website is http://www.youngdeafandcf.tumblr.com

Wembley opticians defeat the Ten Tors!

Congratulations to Rakesh Kapoo, Bhakti Patel, Ananda Sena, Rashid Mahmood, Sonal Parekh, Sherya Ghandi, Kavi Kotchea, who braved the weather and completed a 50 mile trek of the Dartmoor Ten Tors raising £1,277 for the CF Trust last November.

The group of opticians from Wembley took just 2 days to complete the challenge, climbing tors as high as 570m despite the treacherous conditions encountering snow, wind, fog, ice, sun and rain.

The team completed the challenge for some of their young customers who have CF after being impressed with their 'get up and go’ attitude and positive thinking.

Well done to all of you for completing the challenge!