The CF Trust Blog

Ceri's 40th

2011-09-30T09:09:00.004+01:00

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

2011-08-15T16:06:00.000+01:00

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

2011-05-14T09:10:00.005+01:00

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.

2011-05-11T12:59:00.002+01:00

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

2011-05-09T11:49:00.003+01:00

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

2011-05-08T12:09:00.003+01:00

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!

2011-05-07T17:27:00.004+01:00

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!

2011-05-04T16:48:00.005+01:00

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…..

2011-04-28T12:05:00.002+01:00

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!

2011-04-21T15:08:00.002+01:00

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!

2011-04-07T10:23:00.002+01:00

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

2011-03-25T15:31:00.002Z

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!

2011-03-18T14:54:00.003Z

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!

2011-03-17T09:40:00.005Z

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?

2011-01-14T12:29:00.004Z

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

2011-01-12T17:00:00.002Z

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!

2011-01-05T10:27:00.005Z

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!

QVC and Honora Pearls to support the CF Trust

2010-12-20T15:09:00.002Z

On Wednesday 22nd December, the shopping channel QVC will be supporting the Cystic Fibrosis Trust.

Their first ever ‘QVC Cares Day’ will feature a selection of top brands who have chosen to support their favourite charities throughout the day and we are thrilled that Honora Pearls are supporting the Cystic Fibrosis Trust.

This is a great opportunity for that bit of last minute Christmas shopping as well as finding out more about our charity work with regular short film clips showing throughout the day. The days’ event will include a standard programming schedule with airtime allocated for the promotion of our charity as well as the opportunity to link on-air sales with an opportunity to donate also.

‘Honora Pearls’ will feature a wonderful range of jewellery products throughout the day and is generously donating 15% of the purchase price to the Cystic Fibrosis Trust.

Find out more on the QVC website

Happy shopping!

Climb every mountain

2010-11-19T16:54:00.004Z

Everyone has a mental list of things they'd love to do one day and climbing Mount Kilimanjaro is probably top of the list for a lot of people.

Kilimanjaro is the highest freestanding mountain in the world and also the highest mountain on the African continent at 5,896m. Its snow-capped summit rises high above the dusty African plains with huge permanent glaciers flow down from the summit Uhuru Peak.

Sounds amazing doesn't it?

A group of fundraisers recently took on this challenge for us and did a great montage of photos and video from their trip which you can check out on You Tube. If you're inspired to find out more have a look at our website.

Sam completes amazing challenge

2010-11-15T12:42:00.006Z

Well done to Sam Tomson and team who cycled 1,000 miles from Calais to Barcelona raising over £5,500 for the Cystic Fibrosis Trust.

28 year old Sam, who has CF, cycled with his friends James Cathcart and Mike Tourle and his dad Colin. His mum Lynne drove the route to provide back-up and carry all his medication.

You can find out more and sponsor the team at www.justgiving.com/calbar2010

Well done Allison!

2010-11-11T09:16:00.003Z

A HUGE congratulations to the lovely Dr Allison John who won a Pride of Britain award this week. Allison is a real inspiration to the CF community, as despite having all her major organs transplanted, she still fulfilled her dream to become a doctor, qualifying this year.

CF Trust awards new research grants

2010-10-29T16:00:00.004+01:00

The Cystic Fibrosis Trust has awarded £188,000 to four new research projects aimed at benefiting those with Cystic Fibrosis (CF).

Dr Eshwar Mahenthiralingam and his team at the Cardiff School of Biosciences, Cardiff University have been awarded £45,000 to investigate a bacterial infection called Burkholderia multivorans that causes lung damage, a reduction in lung function and a shortened life expectancy for those with Cystic Fibrosis.

Scientists at Queen’s University, Belfast led by Dr Lorraine Martin have received £50,000 for a research project aimed at investigating dehydration in the lungs of people with Cystic Fibrosis.

Professor Bob Ford at The University of Manchester has been awarded £75,000 for a project aimed at studying the activity of the CFTR protein by understanding how it is built and how it works. CFTR (Cystic Fibrosis transmembrane conductance regulator) is the protein that controls the movement of chloride through the lining of the cells. It is the faulty CFTR that causes the problems in Cystic Fibrosis by not working at all, or not working enough.

A grant has been awarded to scientists at the University of Exeter led by Dr Alan Brown to investigate the relationship between patients who have Cystic Fibrosis-related diabetes, and a particular lung infection called Burkholderia cepacia. This research was funded by the University of Exeter's 2009 studentship campaign in conjunction with an £18,000 research grant from the Cystic Fibrosis Trust.

These four new projects will be running alongside the other research currently funded by the CF Trust into areas such as gene therapy, early detection of lung disease in infants, transplantation, depression in people with CF, inflammation and drug treatments.

From Essex to Paris by bike!

2010-10-28T11:19:00.003+01:00

Congratulations to Robert Lee from Rainham, Essex who cycled from Dagenham to Paris raising over £600 for the CF Trust.

Rob originally intended to cycle around the battlefield of The Somme, but after a colleague at work threw him the challenge to cycle to Notre Dame in Paris he accepted the challenge in aid of the Cystic Fibrosis Trust.

His 250 mile journey took a total of 6 days and 13 hours. To prepare for the ride he trained in the local area cycling as far as Southend and back to Rainham.

Well done Robert and thank you!!

Jodie takes on the Kielder Marathon

2010-10-27T16:35:00.004+01:00

Congratulations to Jodie Symington, who has CF and took part in the first ever Kielder Marathon around Europe's largest man-made lake in the heart of Northumberland. Here she is with Steve Cram, organiser of the event. Jodie is hanging up her running shoes after taking part in lots of runs for us over the past few years including the very tough Everest Marathon.

Well done Jodie and thank you!

Go Team Kirsteen!

2010-10-12T12:23:00.004+01:00

Congratulations to Team Kirsteen who conquered Ben Nevis for us last month and raised a staggering £9,000. Amazing!

Nice tutus!

2010-10-08T15:16:00.007+01:00

Congratulations to the team of 15 colleagues from Deloitte who raised over £21,000 by cycling from London to Paris for us last month. Here they are with Andy Abraham from X factor who they met en route!

Well done guys and thank you.

Support our Specialist Nurses

2010-09-27T16:06:00.005+01:00

We're supporting the Royal College of Nursing's Frontline First campaign against cuts to nursing jobs and services in the NHS.

The CF Nurse Specialists have such an important role in patients lives and are the glue that holds the CF service together. Without them, it would fall apart. Apart from their identified CF responsibility in outpatient clinics, attending to inpatients, training the ward nurses in CF, and supporting families coping with IVs at home, they fill innumerable gaps. They are the familiar, constant and reassuring presence for families or adults with CF.

Some CF Nurse Specialists have been asked to spend some of their time on general ward duties rather than caring for those with CF. Whilst we appreciate the ongoing need for efficiency
and cost savings, this should never be at the expense of the health of people with Cystic Fibrosis. CF nurses and teams are often already overstretched and reducing nursing time further is a grave concern, particularly as we understand that this has led to a reduction in the number of home visits that some CF nurses are now able to undertake.

We are keen to hear from parents/patients as to whether these issues have affected the care you/your child receives. Please do contact us with your experiences by emailing gmatthews@cftrust.org.uk

You can find out more about Frontline First here and read our post on their blog here

Sam and team take on epic cycle challenge

2010-09-15T14:10:00.005+01:00

We get to hear about some fantastic people with CF doing some amazing challenges here at the CF Trust and Sam Tomson is no exception. On the 9th October he'll be starting a 1,200 mile bike ride from Calais in France to Barcelona in Spain, and hopes to raise £10,000 for the CF Trust. Here's more from the man himself....

My name is Sam Tomson, I’m 28 and I have Cystic Fibrosis. I am very lucky to be able to even consider undertaking a challenge of this nature, which will involve cycling about 100 miles a day for 2 weeks. My lungs are colonised with Pseudomonas, but I manage to keep up a good lung function with lots of exercise and a focus on keeping my chest clear.

A few years ago I cycled just over 1,000 miles from Land’s End to John O’Groats and really enjoyed the experience of seeing England, Wales and Scotland in its purest form, and the immense satisfaction of seeing our progress on the map! The daily routine for the upcoming trip will be similarly gruelling: wake up early and try to stuff down as much breakfast as possible, do my medications and hit the road for a 7 hour or so day of cycling. Throughout the day my biggest challenge is staying hydrated and keeping my energy reserves up, so constant banana, cereal bar, jelly babies and glucose drinks action! Yes, there will be days I’ll be feeling low on energy or struggling to keep a big meal down while out cycling, but I know I’ll enjoy it and will be thinking of all the money we’ve raised. With my parents driving the route to provide back-up and carry all my medication, and my two team mates forging ahead and keeping all of our spirits up, I know I’ll complete the trip.

The link to sponsor me and the team, or share with someone else is www.justgiving.com/calbar2010. We’re quite a way behind our target so every little helps and those extra £ will help inspire us to keep those legs pumping up and down and up and down….

Thanks Sam and good luck!

Team Racy Knickers hit the road!

2010-08-24T09:41:00.005+01:00

Fundraisers Nicole Taylor, Sarah Kinloch and Carolyn McCall are preparing to embark on the adventure of a lifetime this September.

The girls, who have several friends with CF, will be driving from Calais to Split in Croatia in an organised car rally – a journey covering over 2000 kilometres.

Nicole said "This may not be an unusual leisure activity for some people. But for us 3 females who know very little about cars, this is a huge personal challenge to not only get to the finish line in Split but also get our car ready for the starting line!

There's also one other 'small' issue - the rules of the rally state that you must buy a car for under £150. So thankfully, we managed to source one from a friend for the grand sum of £0.43 - and a case of beer!"

You can sponsor the team here and follow their adventures on their blog

Southampton lads take on 980 mile cycle for the CF Trust

2010-08-19T12:10:00.003+01:00

Southampton man Dan Doherty will be raising vital funds for the Cystic Fibrosis Trust this August by cycling from John O’Groats to Lands End.

29 year old Dan, who works for the engineering consultancy Mott MacDonald as an acoustic engineer, has chosen to raise money for the Cystic Fibrosis Trust because his younger brother Ben died of CF in 2008. He is taking part with three friends, Craig Bremner who also works for Mott MacDonald and his university friend Thomas Spenkuch. The team will cycle 100 miles a day for 10 days and will be riding without a support vehicle. Dan said “We are all avid cyclists and have been training but we’ve never cycled anything like the distance we’ll be covering during the challenge. I lost my brother, Ben, to Cystic Fibrosis when he was just 23 years old. We’re hoping to raise money to help fund research into a cure as well as treatment of the symptoms so that CF sufferers have brighter prospects and a longer life expectancy.”

The team leaves John O’ Groats on Sunday 22 August and you can sponsor them at www.justgiving.com/JoGLEforCF

Andrew walks Coast to Coast for the CF Trust

2010-08-18T10:41:00.003+01:00

Congratulations to Andrew Horner who recently walked across northern England following Wainwright's Coast to Coast route - 12 days, 190 miles and three National Parks.

Andrew walked in memory of his friend Richard Grannell and has raised £1,250 for the CF Trust. You can find out more on his justgiving page.

Bon voyage to some fundraising friends

2010-08-05T11:20:00.003+01:00

A sad farewell or perhaps au revoir to Michael Crouch and Tori Milner who are off on a round the world trip. Mike and Tori are friends of Catherine and Julian Sheahan who have 7 year old twins with CF. From when the children where first diagnosed Mike and Tori pledged to help in any way that they could and they have been great supporters of the CF Trust over the years.

Last year Michael completed Hadrian’s Wall on crutches despite being told by a physio that he was mad to do it. Not only did he finish it with energy and only one crutch, mastering the rugged pathways like a mountain goat, he did his part in raising nearly £20k for the CF Trust! Michael also is one of the top purchasers of the CF Trust's Mr Potato Head pin badges, as he was forced to buy one everytime he was late for a meeting with Julian. Needless to say, he has quite a collection!

To mark their farewell, before embarking on a round the world trip, the couple held a farewell party in aid of the Trust. This involved bowling, dressing up and karaoke, raising a further few thousand pounds. They have been dear friends and a real asset to the Trust, and will be sorely missed.

Sam takes Great Strides for the CF Trust

2010-07-29T10:42:00.010+01:00

Well done to 11 year old Sam Haythornthwaite and family who took part in a sponsored walk at Itchen Valley Country Park in Hampshire to raise money for us.

Sam said: "I arrived on a beautiful day at the park with my Mum, Dad, sister and my dog Charlie. After bickering about where we were on the map, we set off to do the 5 kilometres through the country park. The walk took us through various trails past huge totem poles and thick forests. As we were the only family on the walk we were in no rush and eventually finished in 1 hour 40 minutes."

"We were amazed when we found out that altogether we had raised a total of £505 for the CF Trust. I'm very proud of raising this much. It means a lot to me because I have CF and it feels good because I know I've played a small part in helping to find a cure."

Thank you Sam and well done!

Hair today gone tomorrow! (sorry)

2010-07-26T14:58:00.004+01:00

A big thank you and well done to Andy Kenny from the West Midlands who cut off all his hair to raise money for us! He's still counting his sponsorship money but it looks as though he's raised around £250 which is great. Well done Andy!

Celebs on Twitter support CF awareness

2010-06-30T10:30:00.007+01:00

Fundraiser and mum of two boys with CF Lorraine Barnes has been working hard to raise awareness of CF through her special 'Get it off your chest' T-shirts. She's been tweeting lots of celebs to ask them to wear her t-shirts and the results have been great - Simon Pegg, Ben Shephard, Ali Bastian, Duncan Bannatyne and Mark Hamill aka Luke Skywalker have all lent their support.

Actress Kathryn Drysdale has also backed the campaign by taking the T-shirt with her to celeb parties and last night got Frank Lampard and Boris Becker to pose for her!

Special thanks to mum and fundraiser Alison Dillon who has also been recruiting celebs to wear t-shirts.

You can view the celebs who've sported the t-shirt so far on our facebook gallery and you can also follow Lorraine and the CF Trust on Twitter.

Close to the Edge

2010-06-29T10:47:00.003+01:00

Yorkshire man Jonathan Skinner will be raising vital funds for the Cystic Fibrosis Trust this August by motorcycling 4,000 miles around the entire coastline of the British Isles.

27 year old Jonathan embarks on his amazing challenge on August 1st from Harrogate and will be riding 400 miles a day for two weeks camping overnight at stops along the route. He heads north from Harrogate with his first spot in Fife.

Jonathan has chosen to raise money for the Cystic Fibrosis Trust because his aunt has Cystic Fibrosis (CF). He said: “I wanted to do something to raise money for my aunt and I love motorbikes so this seemed like the perfect challenge. I was inspired by Ewan McGregor and Charley Boorman who motorcycled round the world. Although I’m not covering as much ground as them it’s still going to be a tough challenge, and has only been completed by a handful of riders.”

Jonathan has already raised nearly £6,000 for the CF Trust. To find out more and donate go to www.closetotheedgetour.co.uk

Making a difference

2010-06-08T11:03:00.007+01:00

Last year we came into contact with some people called See The Difference. They had recently set themselves up as a charity that helps other charities through video fundraising. The idea is simple – you watch video appeals on their website and donate to any causes that you like. The twist is, you then get feedback from the people you helped, so you can see the difference you’ve made.

We decided to ask for money for start-up grants, so we can help more people with CF make a home for themselves and gain independence. A young man called Alex who had received a start-up grant kindly agreed to be filmed, so we made a video about him and his fridge. The website has now been launched and our appeal is, at the time of writing, one of the most viewed. You can watch it – and, of course, donate to it – on the S ee the Difference website

Go Michael!

2010-05-13T11:51:00.004+01:00

We're pretty amazed by 12 year old Michael Turner from Winchester who is planning a 115 mile sponsored walk this May half term and has already raised £17,500 in sponsorship money for the CF Trust. Wow!

Michael, who goes to The Pilgrims’ School in Winchester, is doing the walk because his 4 year old cousin Maddie was diagnosed with Cystic Fibrosis (CF) 18 months ago.

It will take Michael 7 days to complete the walk, leaving Farnham railway station on Friday 28 May and finishing at Canterbury Cathedral on Thursday 3 June. His father, grandfathers and uncle will join him for a day or two along the route, which is the modern incarnation of the old Pilgrims’ Way.

The Pilgrims' Way was the historic route taken by pilgrims from Winchester to the shrine of Thomas Becket at Canterbury in Kent. Much of the traditional route of the Pilgrims’ Way is now part of the modern road network and walkers wishing to follow it to use the North Downs Way as an alternative.

You can sponsor Michael here http://bit.ly/mjt_ndw - what an inspirational young man.

London Marathon 2011!

2010-05-04T11:49:00.002+01:00

Do you want to do something amazing for the CF Trust?

Entries for ballot places in the 2011 London Marathon are now open - they'll close when 125,000 applications are received which took just 4 days last year.

If you want to apply do it today at the link below and if you're lucky enough to get a place you can use it to run with us in our biggest fundraising event of the year!

Good luck!

http://www.virginlondonmarathon.com/marathon-centre/enter-virgin-london-marathon/

It's a fair cop!

2010-04-08T10:07:00.005+01:00

Congratulations to Cat Pawlikow, age 29, who has CF and who works for Northumbria Police as a Community Support Investigation Officer. She just won the award for Outstanding Staff Member of the Year! Cat's job involves investigation of arrest packages, interviewing and charging prisoners, preparing files for court, obtaining statements, self-defence courses, first aid, drugs analysis and whole range of other skills. Well done Cat and keep up the good work!

The Big Cake Bake!

2010-03-30T14:09:00.002+01:00

This year's CF Fundraising Week is 17-23 May and we have a special theme this year....The Big Cake Bake!

We all love cake, whether it's a victoria sponge, carrot cake or a cupcake and we want you to use cakes to help raise funds for the CF Trust. Whether it's a coffee morning or a cake sale all you need is a venue, generous slices of cakes and cookies, plenty of liquid refreshment and generous guests! You can host your event during CF Fundraising Week or at a time convenient to you earlier or later in the year.

Your guide to The Big Cake Bake is now available, along with posters and invitations, please contact our Events Team for a fundraising pack on 0300 373 1100 or email events@cftrust.org.uk - don't forget to include your name, address, postcode and a contact number - and you can get baking to help see off CF!

Find out more at www.cftrust.org.uk/help/nationalcampaigns/thebigcakebake

Employee of the month?

2010-03-22T10:30:00.007Z

Lots of CF Trust employees do their bit outside of work hours to help raise funds for our vital research. Andrew Moran from Donations Support (He's the one on the far right in the photo above) told us a bit about what he is doing for the CF Trust this April.

My name is Andrew; I work on the Donations Support Team here at the Cystic Fibrosis Trust. For the last four years I’ve worked with my colleagues sending out what I would imagine to be thousands of thank you letters to all our lovely fundraisers and supporters. It’s a very rewarding job and I’ve always enjoyed working on the team.

My not-so-secret passion outside of work has always been live music. I started learning drums at school and since then I’ve been lucky enough to play all over Europe in various bands.

Recently I was given the opportunity to combine my two great interests by playing a gig in aid of the Trust. My current band Not Cool have been kindly asked by charity gig promoters Positive Action to play one of their fundraisers on April 3rd, nominating The Cystic Fibrosis Trust as their charity of choice for this particular concert

Over the last year Positive Action has raised hundreds of pounds for charities like Shelter and U-Turn. They recently held a very successful benefit concert for those affected by the earthquake in Haiti.

We’ll be joined by our friends Chapter Sweetheart on the night, and we are actually releasing a limited edition CD just for the gig featuring a couple of tracks by both bands. The venue will be the Victoria pub in Mile End, the premier music venue in that area, and all of the proceeds taken on the door (a cheap as chips £3 will get you) go to the Trust.

I’ll be honest – As you can imagine from our name my band is a bit noisy and may not be to everyone’s taste. But if you’d like a great Saturday night out at a good live music venue with a friendly atmosphere, and fancy raising some money for the Trust in the process, then please come along. Remember to come and say hello, it would be great to ‘place a face’ to some of the wonderful letters I get to read!

www.myspace.com/notcoolisaband
www.myspace.com/chaptersweetheart
http://www.myspace.com/thevictoriae3

Fancy abseiling for the CF Trust?

2010-02-25T11:42:00.003Z

We have three different abseils happening in the UK this spring and we'd love you to join us for one of them - it's a great adrenaline rush and a fantastic challenge.

Invest NI, Belfast, 13 March - 160ft abseil down this most impressive building

Manchester United FC, 28 March - 140ft free air abseil from the roof of the North Stand

Celtic Football Club, 2 & 3 April - 100ft free air abseil from the South Stand

If you're interested visit www.cftrust.org.uk for more details or contact our Events Team on 0300 373 1100 or events@cftrust.org.uk

Does my bum look big in this?!

2010-02-11T12:14:00.003Z

In more unusual fundraising news 16 year old Kristian Long organised a Sumo Wrestling Competition for his teachers. The students of Plume School, Maldon Essex had to pay to watch the teaching staff compete against each other and the event raised over £240 for the CF Trust. Well done Kristian...and the teachers for taking part in less than flattering outfits!

Max and his mankini

2010-02-09T15:29:00.003Z

We had to blog about one of our very special fundraisers - 16 year old Max Richardson who spent Sunday walking up Southend High Street in a very fetching lime green mankini to raise money for us. Well done Max!

http://www.justgiving.com/maxmankini

Oxygen on flights

2010-01-25T15:50:00.003Z

Many of you will be turning your mind to planning your summer holiday, in an attempt to get away from this winter gloom. We often see the topic of troublesome travel insurance discussed, with those with CF often dreading the prospect of hours on the phone to travel insurance companies facing hefty premiums and multiple refusals; but have you thought about whether you’re going to need supplementary oxygen when jetting off to sunnier climes?

A proportion of people with Cystic Fibrosis need supplementary oxygen when flying, due to the oxygen levels in the cabin dropping at high altitude. Charges for what is an essential for many, vary greatly, with some airlines such as BA, Cathay Pacific, Emirates, Thomson and Virgin all supplying free oxygen on the advice of a doctor; but others enforcing hefty charges of up to £500 per trip. A quarter of all airlines recently contacted by PHA-UK * do not supply supplementary oxygen at all.

Having done a spot of our own ‘secret shopper research’ we were disappointed not just with the costs some airlines enforce, but at the attitudes of airline employees when trying to arrange the oxygen. Extended periods of time were spent on hold, and some airlines claimed to simply ‘not know’ what to do about getting supplementary oxygen on a flight!

Together with the PHA-UK and the British Lung Foundation, we are working to change this situation. To help, please sign this petition.

*PHA-UK stands for Pulmonary Hypertension Association-UK

4 Peaks 4 Bikes 4 People

2010-01-13T14:47:00.005Z

A team of four people from Basingstoke Bluefins Swimming Club are taking part in a charity bike ride and climb for the CF Trust and Bluefins Club. Andrew Cackett, Gareth Waller, Oliver McSoley and Gregory Thomas plan to conquer the four highest peaks in England, Wales, Northern Ireland and Scotland and hope to raise £10,000.

They begin their challenge on 10th August in Basingstoke and estimate the challenge will take between 10-14 days. They cycle to Snowdon and will complete their first climb (3560ft) before crossing to Northern Ireland to climb Slieve Donard. From there they will cycle to Scotland to climb the highest of the four peaks, Ben Nevis at 4480ft. The final climb is England's highest Scafell Pike before cycling home. In total the ride should cover an approx 1250 miles and a total climb of 4,256 metres.

For more info go to http://www.mycharitypage.com/cackett or www.4peaks4bikes.co.uk

Join Team CF this January!

2010-01-06T10:28:00.002Z

Whether you've over-indulged this festive season or are always fit as a flea, join Team CF and Make a Difference!

We have the world's biggest and best running events here in the UK and, with your help, we'd like to make sure that in 2010, we have our biggest and best running team...

Over 35,000 people will take to the streets on 16 May for the fantastic Great Manchester Run 10k.

Entries open at 8.30am on Thursday 7 January and will fill in literally 3 or 4 days - the last 10,000 applications will go into a ballot this year so get your place confirmed early.

The Great North Run half-marathon on 19 September will see 54,000 runners head into South Shields.

The ballot for entries opens at 8.30am this Saturday, 9 January until 8 February so please apply now. Up to 8 January you can also enter the Daily Mirrors draw for a place too.

Please use your place to run with us and help to see off CF!

Want to book some great entertainment for your fundraising event?

2009-12-15T11:21:00.004Z

A fantastic group of singers from Eton College are offering their services to CF Trust fundraisers.

The Incognitos are a close harmony group made up of 9 singers. The group is entirely organised and rehearsed by students, who practise together for over 6 hours each week. This year they are performing on various occasions, from a tour of Japan, to corporate drinks parties around London. The music they perform is often tailored to suit a particular event but they are renowned for their ambitious and imaginative arrangements of pop songs such as Michael Jackson’s ‘Billie Jean’ or Take That’s ‘Patience’. This year they are giving all money raised from their concerts and events to the Cystic Fibrosis Trust.

They are available to sing at any event, please contact d.leigh@etoncollege.org.uk for more information.

About our committees

2009-12-01T14:29:00.002Z

We’ve just had the second yearly meetings of our research advisory and medical advisory committees. Each one is a group of expert CF scientists and clinicians who give up their time to provide advice on issues affecting the CF community and to review research currently underway. There is also a person with CF and a parent of someone with CF in each group ensuring we’ve considered everything from the family perspective.

Items discussed included work on CF clinical trials in the UK and in Europe, a review of the work of the UK CF Microbiology Consortium, swine flu and the CF Registry – a clinical database of people with CF in the UK.

A lot of the info discussed will make it into CF Today at some point so keep your eyes peeled.

Christmas is coming!

2009-11-20T10:12:00.003Z

Well the nights are really drawing in now and it's getting colder....which means only one thing, it must be nearly Christmas!

Christmas is a time for eating lots, watching rubbish telly and staying indoors, so all the more reason why you should get in a bit of exercise before the big day and help the CF Trust at the same time.

We are holding lots of Santa Fun Runs all over the country starting next weekend. Everyone who takes part gets a free Santa suit and it really is a great way to get into the festive spirit.

Sign up online now www.cftrust.org.uk/help/events or contact our Events Team for an entry form - 0845 859 1100 or events@cftrust.org.uk

YOUNG SINGER SONGWRITERS TEAM UP TO SEE OFF CF

2009-11-02T10:01:00.000Z

A charity single and album are set to raise vital funds for the Cystic Fibrosis Trust.

The project has been masterminded by manager and promoter Lee Robson from Rochdale, who wanted to do something for the charity after meeting one of its young ambassadors who has Cystic Fibrosis, Kelli Gallacher. Cystic Fibrosis (CF) is one of the UK’s most common, life-threatening inherited diseases and claims three lives a week in the UK.

Lee said “I decided I wanted to do a single and album to raise money for the charity and have managed to get unsigned artists and bands from all over the world to take part. All songs on the album have been written by the artists themselves or by writers they work with.”

Full details can be found at http://www.faithalbumlaunch.co.uk/

All money raised from the sale of the single and album will help fund research into treating and curing CF. It will also help provide support, advice and appropriate clinical care to the 8,000 babies, children and young adults with Cystic Fibrosis in the UK.

Another person on the plinth!

2009-10-06T11:35:00.000+01:00

Lois-Jane Thompson is going to be on the fourth plinth in Trafalgar Square this Friday at 8am to raise awareness and funds for the CF Trust. She is looking for volunteers to shake CF Trust collection boxes and buckets whilst she is on the plinth - if you are interested please find her in facebook and send her a message!

Big Bounce for the CF Trust

2009-10-01T10:03:00.002+01:00

Students and staff at Salford City College, Eccles Centre honed their bouncing skills on Friday 18th September, when they took part in a Big Bounce event which raised over £500 for the CF Trust.

Sarah Haynes, Head of Studies at the Eccles Centre, organised the event as her niece, 11 year old Eleanor Geraghty, has Cystic Fibrosis (CF) and Sarah herself is a carrier of the gene that causes CF.

Well done to all who took part - looks like it was a fun day!

Oxygen on flights

2009-08-19T16:01:00.002+01:00

Many of you will already know that we are supporting a campaign by several other charities to end oxygen charges for people with medical condition who want to fly.

At present British Airways, Virgin, Emirates, Thomson and Cathay Pacific do not charge people for oxygen and Easyjet and Flybe allow people to bring their own oxygen on board. However many other airlines are still charging.

If you have had some experience with this please get in touch by emailing gfoy@cftrust.org.uk - we would love to hear your story.

Get your running shoes on for the CF Trust

2009-08-04T15:06:00.004+01:00

We still have charity places available for this year's New York City Marathon and the Royal Parks Half Marathon.

The New York City Marathon is an amazing experience for any runner, allowing you to take in all the sights and sounds of the Big Apple including the Statue of Liberty, the Empire State Building and Central Park. It's the world's biggest marathon with around 40,000 runners and always attracts millions of supporters. The event takes place on Sunday 1st November.

Closer to home, the Royal Parks Half Marathon, a relatively new event, offers you the chance to see London's parks at one of the most beautiful times of the year - autumn. The run takes in four Royal Parks and offers spectacular views of Buckingham Palace, the Houses of Parliament, the London Eye, Marble Arch and the Royal Albert Hall. This event is on Sunday 11 October.

Go to http://www.cftrust.org.uk/help/events/ for more info but be quick - we only have guaranteed charity places available until 14 August.

Water Baby Eva

2009-07-30T09:31:00.003+01:00

Well done to Eva Higgins, a little person with CF, who has just got her 5 metre swimming badge at only 2 years 1 month old! This means she can swim 5 metres with no aids - very impressive considering she has missed a lot of lessons through being ill and having IVs during the past year.

Eva is pictured above with her swimming instructor.

Jordy Pordy at Edinburgh Fringe

2009-07-28T14:22:00.004+01:00

A new play, Jordy Pordy: Taking the Bull by the Horns, will debut at the Edinburgh Fringe Festival this August.

The play is an autobiographical one-man show written and performed by Jordan Herskowitz. The play tells the story of Herskowitz's life as a middle child of two brothers diagnosed with cystic fibrosis, being a Jewish individual growing up in Texas, and performing as a professional mascot.

The show is on from 6-30 August and anyone with a CF connection can buy group tickets at a discounted rate for the opening week only. Tickets for ten or more individuals are £6 pounds. Regular price tickets are £8, £7 concessions.

To book call the Edinburgh Fringe Office at 0131 226 0000 and for more info visit http://www.jordypordy.com/

Any budding Spielbergs out there?

2009-07-24T11:09:00.003+01:00

We are looking for lots of videos to favourite on our YouTube channel - anything about day to day life with CF.

You can upload films from your video camera or mobile to YouTube then just send the link to gfoy@cftrust.org.uk . It's quite easy so give it a go if you haven't done it before.

Have a look at some of the videos we've favourited already http://www.youtube.com/cftrust

We look forward to seeing your handiwork, have a good weekend everyone and get filming!

Mad people on the fourth plinth

2009-07-15T12:09:00.004+01:00

We're loving all the people taking part in the One and Other project. Every hour, 24 hours a day for 100 days, a different person will step up to the fourth plinth in Trafalgar Square and help make a living portrait of the UK.

Of course it has been a great opportunity for charity fundraisers to get up there and raise a few bob by doing something silly...step forward Susan Linnell who spent an hour on the fourth plinth at 1am this morning dressed as a rabbit whilst bouncing on a spacehopper! She has raised £765 for the CF Trust so far so well done Susan!

You can watch her in action here http://www.oneandother.co.uk/participants/susan and sponsor her here http://www.justgiving.com/susanlinnell/

If you are taking part let us know by emailing gfoy@cftrust.org.uk

Lunar World Record

2009-07-13T10:22:00.003+01:00

An incredibly ambitious project to create the largest ground-based mosaic image of the Moon, and enter the Guinness Book of Records will raise vital funds for the Cystic Fibrosis Trust.

A team of people, comprising of some of the world's foremost astro imagers, gathered at the home of Sir Patrick Moore, a long-term supporter of the Trust, in April this year. Using specialist astronomy cameras with telescopes and special software to compile and mosaic the frames, they have created an image which has eclipsed any other so far taken of the Moon.

All proceeds from the use of the final image, which is already being mooted for use at various planetariums around the UK, and is available to view and purchase at http://www.lunarworldrecord.com/, will be donated to the CF Trust.

CHARITY PLACES FOR THE GREAT NORTH RUN AVAILABLE TIL FRIDAY!

2009-07-06T10:53:00.000+01:00

We still have some charity places available for this year’s BUPA Great North Run on Sunday 20 September.

The BUPA Great North Run is the world's biggest half marathon. Every year thousands of runners take to the streets offering a fantastic atmosphere.

All runners will receive a running vest to wear with pride on the day, a fundraising pack, newsletters, access to our online interactive training zone and an invite to the post-run party complete with masseurs

Charity places are available until this Friday, 10th July. You can find out more by contacting 0845 859 1100 or email events@cftrust.org.uk.

Well done Alex!

2009-07-01T12:46:00.005+01:00

CF Trust fundraiser Alex Crossland was the fastest on two wheels at the Capital to Coast Cycle Challenge for Charity on Sunday 28 June.

The scenic ride ending up in the picturesque seaside town of Hove in East Sussex was organised on behalf of several charities, including Norwood, The Down’s Syndrome Association, The Cystic Fibrosis Trust and Heart’s Have a Heart appeal. More than 1,600 cyclists got in gear to raise £300,000.

The fastest rider was 18 year old Alex from Haynes near Bedford, who completed the 60 mile route from Esher in three hours and 10 minutes. Alex, who was sponsored by Virgin Active, was riding on behalf of the Cystic Fibrosis Trust in memory of his older sister Victoria, who suffered from the condition and died last year at the age of 23.

He said he enjoyed the ride, particularly the first half, but added: “Bedfordshire doesn’t have a lot of hills so Devil’s Dyke was a nightmare.” The former Bedford School pupil, who lost about four stone during his eight-month training, is now set to raise an incredible £1,500.

Riders chose from three different routes this year: a 60 mile ride from Esher College in Surrey; a gentler 30 mile ride beginning at Haywards Heath in West Sussex; and a new 60 mile Hove to Hove circular route, starting and finishing on Kings Lawns at the bottom of Grand Avenue. They enjoyed the blazing sunshine and were refreshed by the ample food and drink provided by the organisers along the route to help them cope with the tough cycling challenge.

The event was endorsed by well-known personalities, including Olympic cycling gold medallists Rebecca Romero and Bradley Wiggins, TV presenter Fern Britton and Mayor of London Boris Johnson.

Your opinions on a CF Trust DVD for children

2009-06-22T12:09:00.001+01:00

We’ve had an amazing response on the message boards to the idea of a DVD for children and we’re posting here in case anyone hasn’t seen it.

We plan to produce a new DVD for children explaining Cystic Fibrosis. We would like to get lots of feedback from the CF community before we begin production to ensure that the DVD is appropriate and useful.

The kind of things we would like to find out are: what age your child/children started asking about CF, what sort of questions they ask, are there any questions siblings and friends ask, what are the most difficult questions to answer, and any other things you feel are relevant.

We would also like to hear about what kind of format you think would work best eg cartoons/comic strips vs real people, and whether you think this would be a useful resource overall.

We envisage that the DVD will be for children aged five and up, but again this will depend on the feedback we receive.

Please could you email any comments or suggestions to Jacqueline in the Communications Team on jali@cftrust.org.uk

We will also want to show the DVD to children with CF at various stages of the production process so if you think your child might like to be involved in this, please let me know.

We look forward to your feedback!

Yorkshire Three Peaks Challenge

2009-06-09T14:29:00.004+01:00

Well done to the group of Cystic Fibrosis Trust supporters who braved the weather conditions this weekend and took on the Yorkshire Three Peaks Challenge in the stunning Yorkshire Dales.

The gruelling 26-mile route took them over 3 of the county’s highest summits – Pen-y-Ghent, Whernside and Ingleborough. That’s about a mile of ascent!

Despite horizontal sleet on top of the first peak and very strong winds on the second, group morale remained high and everybody did a fantastic job and raised lots of money in the process. It is estimated that the event will have raised over £8,000 for the CF Trust.

To see some photos from the day, head over to our Facebook gallery. For a peek at some of the other Treks coming up around the UK this summer please see our website.

BLF campaign to end oxygen charges on flights

2009-06-08T15:26:00.001+01:00

The CF Trust is supporting a campaign by the British Lung Foundation, Pulmonary Hypertension Association UK and Muscular Dystrophy Campaign to end additional changes for people travelling with oxygen and to ensure that all airlines offer the same level of service to people with a lung condition.

Find out more from the British Lung Foundation website www.lunguk.org/media-and-campaigning/campaigns/travelling_with_oxygen.htm

Click here to email your MP about this issue http://tinyurl.com/md48jq

Click here to read a survey of 22 airlines by Pulmonary Hypertension Association UK conducted Spring 2008 http://www.phassociation.uk.com/living_with_ph/travel.asp

If you have recently had to pay to use oxygen on a flight please email us with more information gfoy@cftrust.org.uk and jjones@cftrust.org.uk

Breathing Life Awards

2009-06-02T16:12:00.003+01:00

Hi everyone

Well our annual awards ceremony, the Breathing Life Awards, took place last Thursday and a great time was had by all. There were some fantastic nominees across the categories which made it very hard for the judges to pick the winners but the results were as follows.

Junior Sport presented by Jake Humphrey and Gail Emms

Cameron Saltmer age 16 from Dover

Artistic Award sponsored presented by Claire Foy and Caroline Feraday

Chris Benbow age 21 from Crewe

Adult Fighting Spirit sponsored by Next presented by Zoe Salmon

Sarah Elsbury age 26 from Norwich (pictured above)

Fundraising Award sponsored by Prospect Distributions Ltd presented by Cheryl Fergison and Adam Croasdell

Jodie Symington age 24 from Hebburn, Tyne and Wear

Academic Life sponsored by Forest Laboratories presented by Jenny Agutter and James Mates

Nigel Brooke age 33 from Besseccar, Doncaster

Adult Sport sponsored by BT presented by Ben Fogle

Chris Goulden age 19 from Poole

Junior Fighting Spirit Award Sponsored by Next presented by Barney Harwood and Gemma Hunt

Sam Roonan age 10 from Havant, Hampshire

Well done to all who were nominated!

Fundraisers conquer Hadrian's Wall

2009-05-27T16:10:00.002+01:00

Very many congratulations to Julian Sheahan and friends Michael Crouch, Malcolm Croker and David Sharland who walked the course of Hadrian’s Wall earlier this month to raise money for the Trust.

The challenge started in Wallsend in Tyne and Wear and they ended up in Bowness-on-Solway in Cumbria five days later having walked 84 miles in total.

The team were inspired to complete the challenge as Julian’s 6 year old twins Elizabeth and William have CF. They have raised over £16,000 in total, making all those blisters worthwhile!

You can donate at http://www.justgiving.com/juliansheahan1

MPs are good sports at charity football match!

2009-05-20T10:59:00.002+01:00

A team of MPs drew 7-7 against some stiff competition yesterday at Stamford Bridge…. thanks to a hattrick from Andy Burnham and a little help from footballing hero Gus Poyet.

The UK Parliamentary Football Club took on a team of celebs and ex-pros including Angus Deayton, DJ Spoony and athlete Darren Campbell but were blessed with good fortune when Andy Burnham scored three goals in the second half and Gus Poyet defected from the other side to score two goals for the losing team.

A spectator said: “The MPs were losing 4-1 at the end of the first half so Gus Poyet decided to swap sides and lend them a hand. Gus and Andy Burnham were a bit of a dream team in the end scoring five goals between them. The final score was a great result for the MPs.”

The Nicky’s Whisper Challenge Trophy Football Match is sponsored by National Grid. The teams play for the trophy in memory of Nicky West, who had CF and was a tireless ambassador for the Cystic Fibrosis Trust. Chelsea FC kindly donated the use of their ground for the match.

Sainsbury's charity of the year nomination

2009-05-11T09:25:00.004+01:00

Hi all,

Sainsbury's stores are taking nominations for a charity to support over the next year. Each shop will choose its own charity.

We would be really grateful you could nominate the CF Trust in your local sainsbury's and ask friends and family to do the same. They should have small black nomination slips that you just need to fill in and post in the ballot box in store.

The closing date for nominations is 26th May.

New data shows future is brighter for CF patients

2009-05-08T11:34:00.002+01:00

We’re pleased to let you know, just in time for CF Fundraising Week, about new information from our CF Registry. Data on the Registry is collected from patients at over 100 specialist CF centres and clinics throughout the UK.

Results show that median predicted survival has increased from 31 years to 35.2 years. There are now more adults living with CF; 56.7% percent of those in the Registry are over 16 years of age compared with 51.4% in 2004. Encouragingly 73% of adults with CF reported they are currently working or studying.

Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust said: “We have invested a lot of time and money developing the UK CF Registry, and are pleased to see that people with CF are living full, varied and longer lives. However although median predicted survival has increased to 35 years, with many adults living into their 40s, 50s and even beyond, there are still children, teenagers and young adults dying from CF at a young age. Our work to improve clinical care and research into treating and curing CF continues to give better quality and length of life to those with CF.”

Read the full report and the press release at www.cftrust.org.uk.

Good luck in the Belfast Marathon!

2009-05-01T11:45:00.001+01:00

We would like to wish all our runners in the Belfast Marathon the best of luck for Monday.

Click here to read more about one of our running teams taking part - Ciaran's Flyers.
http://www.belfastcitymarathon.com/news/default.asp?ID=24&itemId=10&topicId=&va=0

Big Bounce Humber Bridge

2009-04-30T16:34:00.001+01:00

On Sunday, whilst lots of people were running the marathon, others were taking part in a different sort of fundraiser - a sponsored mile long space hopper bounce across the Humber Bridge.

You can see the bouncers in action here http://tinyurl.com/c3wshb

Good luck to all our runners

2009-04-24T14:07:00.004+01:00

Good luck to all of our intrepid runners who are taking part in the London Marathon and Tresco Marathon this weekend. Thanks very much for all the months of training, sweat and pain and for raising money for the CF Trust.

See you at the finish line!

Come on Yorkshire!

2009-04-23T09:35:00.002+01:00

We're looking for people to take part in our annual running event, the Yorkshire 10k, at Newby Hall near Ripon.

The event, a trail and off road race around Newby Hall Estate, is now in its fifth year and raises vital funds for gene therapy research.

There's also a 2k and pupils from Skelton and Newby Hall Primary School have already signed up to take part.

Schools who enter 4 or more children can win the schools trophy, which is given to the team with the fastest combined time.

Find out more here http://www.cftrust.org.uk/help/events/y10k

The Observer this Sunday

2009-04-17T11:06:00.002+01:00

Check out The Observer magazine on Sunday for an article on gene therapy for CF.

Have a great weekend!

Shameless star takes on the GMR!

2009-04-15T14:01:00.003+01:00

Actor Ciaran Griffiths (Mickey from Shameless) is taking on the BUPA Great Manchester Run for the CF Trust on Sunday 17 May.

The run, which starts and finishes in Manchester city centre, is one of the world’s fastest growing running events and 33,000 runners took part last year.

Ciaran said ”I’ve been getting into my jogging so I’m quite looking forward to it – and the CF Trust have promised me a massage at the end so that makes it worth my while!”

Allison in the Daily Mail

2009-04-14T11:28:00.004+01:00

Allison John, who has CF and has had four organ transplants, tells her amazing story in the Daily Mail
www.dailymail.co.uk/health/article-1169269/Ive-FOUR-transplants---Im-donor-myself.html

She also appears in the BBC series Lifegivers, which goes out this week at 9.15am each day.
http://www.bbc.co.uk/lifegivers/

Well done Allison!

Prescription Charges in Scotland

2009-04-07T16:33:00.002+01:00

If you live in Scotland and have to pay for your prescriptions you might be interested to know that the cost of a single prescription item has been lowered from £5 to £4 and the cost of a Prescription Pre-payment Certificate (PPC) has been lowered from £48 to £38 for 12 months and £17 to £13 for four months. Further annual reductions are planned to remove charges altogether by April 1, 2011.

For more info go to www.infoscotland.com/prescriptions

Good Luck Alex!

2009-04-02T16:20:00.001+01:00

Musical genius Alex Stobbs, star of last year’s A Boy Called Alex documentary, will be undertaking an amazing challenge on Sunday 5 April when he conducts the Rodolfus Choir performing Bach’s St Matthew Passion.

To find out more go to http://www.stobbs-matthewpassion.co.uk/.

New booklet on CF and relationships

2009-03-31T12:16:00.004+01:00

Cystic Fibrosis and Relationships is a new booklet that has been written by two young women with CF, Jacqueline Didsbury and Emily Thackray. They interviewed about 60 people with CF and the booklet is a collection of real life experiences covering various aspects of relationships, such as when to tell your partner about your CF, moving in together, meeting the parents and starting a family. You can download the booklet from the following page on our website.

http://www.cftrust.org.uk/aboutcf/publications/booklets/

Thanks Jacqueline and Emily!

Well done William!

2009-03-25T16:18:00.004Z

We recently had a competition to design a Christmas card which will be sold to raise money for the CF Trust.

We had lots of great entries and it was very difficult to choose a winner but we are delighted to announce that four year old William Booth's drawing of a snowman is the winning entry! William didn't write his address on the back of the card so we haven't been able to tell him personally that he won, if his mum or dad are reading this please get in touch with us by emailing jbillingham@cftrust.org.uk

The winning card will be available to buy in the 2009 Christmas catalogue and online from the CF shop later in the year.

Thanks Scotmid!

2009-03-24T16:32:00.000Z

We have been chosen as Charity of the Year by the retail group Scotmid. Their 260 stores across Scotland (Scotmid, Morning Noon & Night and Semichem) have all got CF Trust collecting boxes in them now. The staff also plan to hold raffles and will be taking part in sponsored events, so if you live near a Scotmid store, pop in to say "thanks" and put a pound in the tin for us.

We're always on the look out for new partners to work with, so if you think your company could help us by adopting us as their charity, or by matching funds raised by you, why not drop an email to Gemma on gwoodward@cftrust.org.uk who'll be happy to help you.

Whistling for CF

2009-03-17T11:08:00.004Z

Lots of our fundraisers do unusual things to raise money for us and Johanna Branston is no exception. She will be taking part in the World Whistling Championships this April and you can see her whistling at the link below!

www.getsurrey.co.uk/news/s/2047023_whistling_womans_unique_charity_bid

Taking on Kilimanjaro

2009-03-13T10:39:00.003Z

Did anyone see the Big Red Nose Climb documentary last night? What an amazing and challenging experience, well done to all the celebs who took part especially our patron Ben Shephard.

If you were inspired by the celebs last night remember you can sign up to take on Kilimanjaro for the CF Trust, like our fundraising manager for Yorkshire Tina Davis-Johnstone who is tackling Kili in August.

To sponsor Tina go to www.justgiving.com/tinadavis5

To find out more about our Kilimanjaro Trek go to
www.cftrust.org.uk/help/events/kilimanjarotrek

Check out Kate in Tesco magazine

2009-03-09T12:50:00.002Z

If you are a Tesco customer pick up a copy of their free magazine next time you are doing the weekly shop - the cover star is Kate Smith one of our ambassadors.

Here's some more info
http://www.tesco.com/todayattesco/lifestyle_and_fashion/kate_smith.shtml

Doesn't she look gorgeous? Well done Kate and thank you!

Prescription Charges

2009-03-05T10:36:00.002Z

The British Medical Association has called on the government to make prescription charges free for everyone in England.

The Department of Health is currently reviewing the list of long-term conditions that are exempt from prescription charges. In its submission to the review, the BMA says that extending exemptions without a fundamental overhaul of the whole system will simply “create a new set of arbitrary ‘winners’ and ‘losers’”.

What do you think about this issue? Should everyone get free prescriptions? Or just those with long-term conditions?

Answer our poll here

Prima magazine

2009-03-03T11:16:00.002Z

Thanks to Mandy Kloppers, a pwcf who shared her story with Prima magazine this month. In shops now!

Volunteers wanted for Edinburgh Marathon

2009-02-27T11:01:00.003Z

The organisers of the Edinburgh Marathon are looking for lots of volunteers to help them at this year's event on Sunday May 31st 2009.

Volunteers receive a t-shirt, lunch vouchers and an invite to the post-race barbecue. Every volunteer earns a donation of £15 for their chosen charity. All volunteers also receive an Edinburgh Marathon badge, bronze, silver or gold.

You can also sign up as a team of volunteers. To find out more please go to http://www.edinburgh-marathon.com/?Contracts

First dose of gene therapy given

2009-02-26T15:17:00.002Z

Yesterday the first dose of the gene therapy product was given as part of the pilot study. The pilot study involves 27 people with CF taking one dose each and following successful results of the pilot study, we will move towards the major multi-dose clinical trial. It has taken a great deal of time, effort and money on behalf of us all at the CF Trust, the UK CF Gene Therapy Consortium and the CF community to get this far, so although there is still a great deal of work to be done, we are very excited to reach this stage.

Interesting news story about CF

2009-02-26T10:10:00.002Z

You may have seen in the news today some interesting research about CF. Scientists have discovered that small differences in a gene called IFRD1 in people with CF can relate to the severity of lung disease in the patient.

Here's some more info
http://news.bbc.co.uk/1/hi/health/7908445.stm

We asked the scientists at the UK CF Gene Therapy Consortium what they thought about this and here's what they said.

"It has been suspected for a long time that the severity of cystic fibrosis (CF) lung disease is influenced by genes other than CFTR (the "CF gene") in CF patients. By examining the genetic make-up of a large group of patients, Gu and colleagues have identified IFRD1 as having a
significant effect on lung disease: some forms of the gene are correlated with lower severity and other forms with higher severity. Interestingly, IFRD1 affects the function of neutrophils, cells of the immune system which are responsible for much of the damage seen in the lungs of patients.

The result is important because it confirms the importance of other genes in modulating CF lung disease and implies that therapies aimed at modulating neutrophil function would have a beneficial effect in CF. Such therapies could eventually become a useful addition to the existing
range of symptomatic therapies available. However, therapies aimed at correcting the basic defect in CF still offer the best prospect of providing long-term clinical benefit."

Lynsey's summer of runs!

2009-02-19T11:31:00.007Z

Our very own Expert Patient Adviser Lynsey Morton will this summer be taking on THREE runs to raise funds for the CF Trust. The first, in May, will be the CFT Yorkshire 10k, followed by the Humber Half Marathon in June and then the York 10k in August.

Lynsey and husband Daniel ran their first ever 10k last year and enjoyed it so much that they decided to go one step further this year and run a half marathon too.

The keen pair have already started training, despite the recent snowy weather, but would really appreciate the support of the CF community to spur them on. If you'd like to sponsor Lynsey and Daniel, visit www.justgiving.com/lynseyanddaniel.

Good luck to both of you!!

P.S If Lynsey has inspired you to take part in a run yourself, have a look at our website to find out what's on your area.

A night of soul for the CF Trust

2009-02-18T10:20:00.002Z

We're really pleased that we've been chosen as the official charity of the 2009 Ipswich and Suffolk Press Ball.

Last year this event raised a fantastic £15,000 for the CF Trust.

The event takes place on 19 June at the Hotel Elizabeth in Ipswich and the theme is Soul. The band 'Still Drifting' including the original Ray Lewis from the Drifters will provide entertainment.

If you are interested in buying a table contact Bridget York on 0208 429 7530 or email bridget.york@entireaffair.com

CF gene therapy in the news

2009-02-17T09:33:00.002Z

Some of you may have seen the story in the news about research into using a 'super' virus in gene therapy for CF.

Here's our response to this story.

A spokesperson from the UK Cystic Fibrosis Gene Therapy Consortium said

“The techniques used in this research are innovative, but more work is needed before this could be translated into clinical benefit for people with CF. The virus only carries a shortened version of the CF gene and it remains to be seen if it has the same function as the whole gene; the long-term treatment of a CF patient would require repeat administration of the virus which is usually not feasible as the body develops immune responses against the virus; and although the results are positive in human lung tissue in a laboratory, it remains to be seen if it would work in the patient.

The UK CF Gene Therapy Consortium funded by the Cystic Fibrosis Trust is currently trialling gene therapy in patients for clinical benefit. Our Wave 1 gene therapy research is using a liposome to get the gene therapy product into the body. Following this year's pilot study in humans, we anticipate going to a major multi-dose clinical trial in 2010.”

Norwich City All Stars show support for CF Trust

2009-02-16T10:16:00.004Z

Former Canaries Jeremy Goss, Darren Eadie and Robert Fleck will be reunited at a charity football match for the CF Trust and the Prostate Cancer Charity. The Norwich City Allstars team will take on Saham Toney FC in the Stephen Gower Memorial Cup.

The event has been organised by two London Marathon runners to help boost their sponsorship and will take place on Sunday 29th March at Saham Toney Playing Field in Saham Toney, Watton, Norfolk.

Gates open at 12 noon and there'll be a sporting memorabilia auction, a raffle and bouncy castles for the children.

For more information call Gordon Pitcher on 07909 544580.

Sign up to the organ donor register this Valentine's Day

2009-02-13T16:01:00.002Z

While many will wait in anticipation of an anonymous message landing on their doormat this February 14th, thousands of people in the UK are hoping for a message of a different kind, the news that they will get their life-saving transplant.

NHS Blood and Transplant (NHSBT) is calling for people to make Valentine’s Day the day they join the NHS Organ Donor Register (ODR) and send a message of hope to those who are in need.

While 90% of people in the UK say that they support organ donation in principle, only 26% - just over a quarter of the population - have actually joined the NHS Organ Donor Register. More than 3,000 organ transplants were carried out in the UK last year, but with almost 8,000 people currently waiting, the need for more donated organs is greater than ever

Bobby Dazzler

2009-02-09T10:38:00.004Z

Comedian and Eastenders star Bobby Davro will be entertaining guests at the Black and White Ball for Cystic Fibrosis. The event will be also attended by John Cameron and other BBC celebs from Cash In The Attic.

It's being held at the Portsmouth Marriott Hotel on 18th April. Tickets are £80 which includes a four course meal with wine.

For more info contact Heather Emery on 07818 088332.

Do you know someone who deserves an award?

2009-02-05T14:45:00.008Z

Nominations are now open for this year's Breathing Life Awards. This star-studded ceremony happens annually in London and recognises the achievements of those with living with CF.

It is always such a difficult decision for the judges, as each one of the stories is moving and each one of the people nominated deserve an award. Last date for entry is Friday 27 February, so if you know someone special with CF you want to nominate, make this the year you do it. The Awards are open to anyone with CF living in the UK over the age of five. Click here to find out more.

Christmas card competition!

2009-02-04T16:16:00.002Z

We are looking for budding artists under the age of 14 to design a special Christmas card to go in our catalogue for 2009. Yes yes we know it seems ages til next Christmas but we like to be organised!

The design can be any Christmas theme you choose and the more colourful and brighter, the better. Please send your designs in to Christmas Card Designs, c/o Jo Billingham, Cystic Fibrosis Trust, 11 London Road, Bromley, Kent BR1 1BY by Friday 27 February.

We look forward to seeing your designs!

The CF Trust Blog

Ceri's 40th

Gene Therapy – Latest News: August 2011

A message from our patron Ben Shephard

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

Living with CF - model Cassie Hawthorne

Living with CF - the Davison family

It’s here!

The countdown has started!

It’s almost here…..

CF Week is fast approaching!

Avoiding hospital and getting ready to cheer!

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

Nikki hijacks the blog!

Happy Birthday Tim!

How much time have you spent on treatment?

Young, Deaf and CF

Wembley opticians defeat the Ten Tors!

QVC and Honora Pearls to support the CF Trust

Climb every mountain

Sam completes amazing challenge

Well done Allison!

CF Trust awards new research grants

From Essex to Paris by bike!

Jodie takes on the Kielder Marathon

Go Team Kirsteen!

Nice tutus!

Support our Specialist Nurses

Sam and team take on epic cycle challenge

Team Racy Knickers hit the road!

Southampton lads take on 980 mile cycle for the CF Trust

Andrew walks Coast to Coast for the CF Trust

Bon voyage to some fundraising friends

Sam takes Great Strides for the CF Trust

Hair today gone tomorrow! (sorry)

Celebs on Twitter support CF awareness

Close to the Edge

Making a difference

Go Michael!

London Marathon 2011!

It's a fair cop!

The Big Cake Bake!

Employee of the month?

Fancy abseiling for the CF Trust?

Does my bum look big in this?!

Max and his mankini

Oxygen on flights

4 Peaks 4 Bikes 4 People

Join Team CF this January!

Want to book some great entertainment for your fundraising event?

About our committees

Christmas is coming!

YOUNG SINGER SONGWRITERS TEAM UP TO SEE OFF CF

Another person on the plinth!

Big Bounce for the CF Trust

Oxygen on flights

Get your running shoes on for the CF Trust

Water Baby Eva

Jordy Pordy at Edinburgh Fringe

Any budding Spielbergs out there?

Mad people on the fourth plinth

Lunar World Record

CHARITY PLACES FOR THE GREAT NORTH RUN AVAILABLE TIL FRIDAY!

Well done Alex!

Your opinions on a CF Trust DVD for children

Yorkshire Three Peaks Challenge

BLF campaign to end oxygen charges on flights

Breathing Life Awards

Fundraisers conquer Hadrian's Wall

MPs are good sports at charity football match!

Sainsbury's charity of the year nomination

New data shows future is brighter for CF patients

Good luck in the Belfast Marathon!

Big Bounce Humber Bridge

Good luck to all our runners

Come on Yorkshire!

The Observer this Sunday

Shameless star takes on the GMR!

Allison in the Daily Mail

Read more about our victory at Twickenham yesterday!