Message from Ed Owen

It's my second day as the new chief exec of the CF Trust, and I confess I couldn't wait to get back into the office this morning!

I have been involved with the Trust for almost ten years. I am a CF parent and have been a trustee for the last few years. So it's not entirely new territory for me. The job is an extraordinary privilege, and I am determined to ensure the Trust is doing all it can to improve the lives of those with Cystic Fibrosis.

There is much that those of us connected with the Trust can be proud of - the investment in gene therapy now in clinical trials, the fantastic work to raise standards in clinics, the vital information and support we give to families, and the wider activities to raise awareness of CF. Yet there is so much more to do.

That's why we have a new strategy - "Living longer, living better" - which sets our guiding vision for the next few years. My task is to ensure we deliver it. So we will soon be outlining a new vision for CF research and we have ambitious plans to boost our fundraising and communications efforts too.

It's an exciting time and one which needs all parts of our CF community - those with CF, their families, supporters, clinicians, researchers, trustees and staff - to work together for a common purpose. I hope I can do my bit to make that happen.

All the best

Ed
www.cftrust.org.uk

If I get my transplant I am hoping to do as much charity work as possible.

Hello, I'm Kerry Thorpe and I'm one of the faces of CF week!

I am 21 and I have 'end-stage CF' meaning I need a double-lung transplant to survive. My life is endless treatments, pain meds, IV antibiotics, I'm on 24/7 oxygen and I require a wheelchair as I get too exhausted when walking, I also struggle to climb stairs and do simple tasks such as showering and getting dressed.

Recently I've been extremely unwell, I've been on IV's since October with very few breaks, I have had 2 lung collapses requiring chest drains and then a 3rd smaller one, which thankfully didn't need a drain but it is ongoing and I still have the collapse today.
   
Due to this I can't do anything big for www.cfweek.org.uk but I am raising awareness from my living room!

In the past year I've dedicated myself to raising awareness and money for CF, my family and friends all abseiled down a building raising over £3,000, I was guest of honour at a press ball which raised £15,000 for 3 charities, the main one being CF. A good friend of mine held a ball for her birthday and all 'presents' were to be donations to CF. Also another friend is holding a party in July, all money raised through tickets etc will go to CF Trust.

If I do get my transplant I am hoping to do as much charity work as possible, I'd love to skydive or take part in a bike ride. I would also love to run the marathon, but I will start small and work up!

I hope you have a great week and manage to raise lots of money (and awareness) for CF.

Also if you haven't, please consider signing the donor register - you could save lives. www.organdonation.nhs.uk.

Thank You!
Kerry x

"I treat CF, it doesn't treat me."

I was diagnosed with Cystic Fibrosis at five weeks old so I have never known any other way of life.

Having CF growing up has been a big challenge with having regular hospital appointments; this meant I missed a lot of school over the years, so I was always playing catch up.

Throughout paediatric care I was having IVs every six months. I was lucky enough for my mum to have learnt how to do them, which meant I was able to have the antibiotics at home. With having frequent IVs my veins started to pick up a lot of scar tissue so at the age of ten years old I had my first portacath (port) put in my chest. I can remember that day as if it was yesterday - I was very scared and ended up locking myself in the toilet for awhile whilst I got my head around things. This port only lasted one year. I had my second port put straight in, and lasted about eight years before breaking during a course of IV antibiotics – but this time there were complications. At this time I had already moved to Liverpool Broadgreen Hospital. I remember having blue dye put through my port then having an X-ray to see where it had split - the doctors said it had broken and we booked a date to have it taken out. A short time later we were in the hospital cafe when suddenly my CF doctor, physiotherapist and a heart surgeon were sat at the table with us, I was told to finish what I was eating and a few hours later I was in theatre - the port hadn’t just split, the tube had broken off and had gone through my heart and was embedded in my left lung. When I came round the doctor said how lucky I was to still be with us. The day happened so quickly I didn’t have time to think about things but it really has opened my eyes on life.

At Liverpool they only give me IVs when and if I need them. Being very active I managed to not have any IVs for two years. Since leaving school I have gone on to coaching cricket for a living and over the last three years I’ve been lucky enough to win some awards (Shropshire Young Coach of the Year 2010, West Midlands Young Coach of the Year 2010 and Sky Sports National Young Coach of the Year 2010 runner-up).

Within the last two years I have lost two close friends who had CF so I have decided on 1 June 2012 myself and eight of my friends will be cycling from Land’s end to John O’Groats to help raise money and awareness for the Cystic Fibrosis Trust.

Being asked to take part and to be one of the faces of Cystic Fibrosis Week 2012 I couldn’t say no. This is a huge opportunity for me to help with awareness as it is hugely important people know about CF and the effect it has not only of the sufferer’s life but the effects it has on the family as well.

I’ve always looked at Cystic Fibrosis in the way that I treat CF, it doesn't treat me.

James

James Wojda

Big Brize Bounce

Hello!

It's day 4 of CF Week and we are hoping that the weather will cheer up! Today a few of us are going to the RAF Brize Norton, Big Brize Bounce. It is a World Record Attempt for biggest number of people racing on space hoppers.  Take a look at what they will be getting up to.  Brize Norton decided to hold a large event today to support Cystic Fibrosis Week, we are expecting up to 1000 service men and women to take part.  They decided to do this because two of the men on squadron 47 have children with Cystic Fibrosis.

In all the busyness here at CF Trust HQ, with our Big Cake Bake and Information Day, it's important to remember why we are raising awareness and funds for Cystic Fibrosis. So often people only know about CF when it affects one of their family or friends. Whatever you decide to do for CF Week, be sure to speak to people about the Week, mention our website www.cfweek.org.uk and ask them to mark the week by finding out what they can about CF. You could also ask them to donate to the CF Trust to help us go on supporting families and funding medical research. It is through our support and advances in treatments that we can truly make a difference and help people with Cystic Fibrosis to live longer and better lives.

If you live somewhere where you can get a Metro newspaper you'll see on page 13 a great article about CF Week and 48 year old twins, Christine and Michelle who are living with the condition.

If you want to take part in an event near you there is still time, visit: www.cfweek.org.uk and take part.

Love
The CF Week Team!
x

‘Breaking the mould’

Hi Everyone,

I’m one of the stories for CF Week and I’m celebrating today, 1 May, as it’s my gorgeous son Felix’s 5th birthday.

Every parent takes delight in the milestones of their off-spring, but there’s extra poignancy for me. Born in 1971 and not expected to live much beyond my teens, I’ve never been complacent about life, taken anything for granted which was exacerbated by the sad death of CF friends. In my 20s I never thought I’d live long enough to have my own wife and child.

Marriage to Katie in 2003 spurred me on that my destiny might be different than I had originally thought. I did have serious concerns about starting a family when there’s no certainty of being alive for them, but I was feeling healthy enough, so it seemed a natural a way to keep defying my illness. When so much of a CF life is not at all normal, it’s fulfilling to do something that your peers see as routine and breaks the CF boundaries.

Three difficult years later on our sixth IVF cycle we got lucky and in 2007 we had our miracle boy. Felix means ‘happy’ in Greek and ‘lucky’ in Latin, so he will be ‘happy-go-lucky’.

Being a parent while managing my daily CF regime of 40 tablets, nebulisers and physiotherapy is punishing and at times counter-intuitive, involving situations that puts my own health second. From the extra tiredness to increased risk of infection to being exposed to the elements when taking Felix out. Indeed, I’m very s of the risks around being too close to him when he has a sniffle and as harsh as it sounds, I shield myself by not kissing him at these times.

I don’t completely hide my illness from Felix, who has always seen me doing my nebulisers and heard me coughing. He doesn’t really ask me about it and just takes it in his stride as children do.
Generally, I do as much as I can and act like any normal dad running around with Felix, which I know he appreciates from me.

When I’m having a dark CF moment, Felix takes my mind off it and inspires me to keep fighting. He is a useful distraction, stopping me from dwelling too long on my personal health battle. Indeed, I only need to look into his eyes to see all my tomorrows.

We have both ‘broken the mould’ in our lives – me to stay in this world and live a longer, better life and Felix to enter it. He’s the best of me, my lasting legacy, the final piece of my jigsaw; and someone I fully intend to see grow up and have his own family.

Outside of working full-time this week, I intend to go for a jog (in between the showers) because exercise has been a vital part of my survival.

I’ll also write my ‘Postcards from Earth’ blog and a chapter of my book which has allowed me to open up about my 40 years of battling CF but gives me the chance to de-mystify the condition for the non-CF community where it needs to be better understood.

In addition, I will sign the e-petition Campaign for fairness for people with CF, submit an online survey to raise money and discuss my CF with Sarah Gorrell on BBC Radio Surrey (104.8FM) this Friday 4 May at 5:30pm.

I want to wish the best of health to all those in the CF community.

Tim

Tim Wotton