Less than one month to CF Week 2012!

Hi again,


I hope you’ve all been able to enjoy some of the beautiful weather we’ve been having over the past week; I’m keeping everything crossed that it stays around for Cystic Fibrosis Week!

I’ve been hearing about a lot of your plans for our national week of fundraising and awareness – you really are an inspirational bunch! Talking of inspiring people you might like to read some of the amazing stories of people living with Cystic Fibrosis on our Cystic Fibrosis Week website; people like Bea and her son Alec. Bea was diagnosed with CF when her son was born and she is helping us promote our ‘free wills’ campaign (http://www.cfweek.org.uk/get-involved/free-wills)

Our Head Office are running a Bromley Big Cake Bake on Wednesday 2 May so please pop in and say hello if you’re in the area – we’d love to see you! Many of you have also decided to raise funds through tea and coffee mornings, there are many materials available on the website, and it’s a great excuse to get together with friends and family.

As for me; I’ll be jumping out of a plane on Friday 5 May along with my sister and my eldest son. I keep thinking it will be fine and that I’m looking forward to it and then I realise what is actually involved and I start to panic slightly! Do let us know what you will be up to during the week: cfweek@cftrust.org.uk

Lots of love


Nikki x

Cystic Fibrosis Week 2012 - 29 April - 5 May

It’s on its way! And I’m back – hijacking the blog again! You may remember me from last year – I work at the Cystic Fibrosis Trust as part of the fundraising team and one of my three children (Beth, age 11)  has CF.

Over the past few months many of you have been helping to create the new strategy for the CF Trust – Living Longer, Living Better. This shows many of the ways that we are all working to improve the lives of people living with Cystic Fibrosis. It’s fantastic to see the path laid out in front of us and so exciting to be part of the journey.

To make these changes will take lots of small steps, by lots of people, so why not join me and the CF Week team, having lots of giggles as we wind our way to CF Week 2012.

There are so many ways you can take part this year, whether you want to fundraise, raise awareness or campaign for change – there really is something for everyone! Claire Francis, our Policy and Public Affairs Manager, is busy creating some survey questions and planning our parliamentary campaign so check out our Cystic Fibrosis Week website for regular updates on how you can get involved with this.

I’ve been chatting with lots of our supporters over the past few months to find out what you would like to get from the week. So, we have a wide range of events you can sign up to, or help and information on how you can organise your own event or raise awareness. Email me at cfweek@cftrust.org.uk with your news, comments or queries; we’d love to help!

Join in, have fun, change lives – you know you want to!

Nikki x

Ceri's 40th

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


www.cerifabulousat40.blogspot.com

Gene Therapy – Latest News: August 2011

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

Where are we now?

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

What are we doing to raise the money?

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

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

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

How you can help

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

- Visit Virgin Money Giving to donate online.

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

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

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

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

A message from our patron Ben Shephard

Hi everyone

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

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

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

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

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

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

Cheers

Ben xx

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

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

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

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

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

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

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

Living with CF - model Cassie Hawthorne

Hey!

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

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

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

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

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

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

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

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

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

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

Love,

Cassie xx