Behind the Lens of the Cystic Fibrosis Trust 2014 Calendar

Along with a great collection of cards and gifts, our Christmas Shop is also selling our 2014 calendar, containing photos taken by the Trust's own Dominic Kavanagh.

We've asked Dominic to give us an insight into the story behind some of the photos included.

It's a privilege to help out with the 2014 calendar It's exciting to think my efforts will help support clinical care, campaigning, raising awareness and funding of vital research within cystic fibrosis. 

My creative expression has always been through art; through watercolour painting and drawing as a child and young adult, but a love of wildlife and the natural world and interest in cameras led me into wildlife and landscape photography as a hobby.

Importantly, this has kept me relatively fit over the years - carrying heavy lenses to photo destinations is a great form of airway clearance! Although my health has deteriorated in the last two years, I've not let CF beat me or my photography. I have to compromise, doing morning physio whilst other photographers are capturing great sunrises; stopping short of the highest vantage points as others carry on for the best landscape views. But whilst other photographers list their achievements in terms of awards or competition prizes, I feel my achievement is managing to get out there and capture an evocative image in spite of the discomfort and breathlessness CF causes.

Some of my favourite images have been the hardest to achieve. A trip inside the Arctic Circle in March 2013 was physically punishing for me, in temperatures of -25 °C in Finland and a balmy -7 °C in Norway. I dosed up on steroids and took all the advice from my CF team to counter the low temperatures. I battled my way through Heathrow with camera bag, tripod, suitcase, rucksack of meds and compressor/nebs, as well as my in-flight oxygen. Hours later, the snow scene (January) of pine trees greeted us, as we headed into the woods for Finland's colourful birds. I stayed out until 3am to photograph the Aurora Borealis (Northern Lights), although haemoptysis cut my last night short.

The image of two puffins (July, pictured) on the Shetland Islands reminds me of the challenge of wildlife photography for someone with cystic fibrosis. I had to get up at 4am to do physio and nebs before our gruelling walk, with kit, to the cliffs at Hermaness. The experience provided everything: beautiful natural morning sunlight, undisturbed great squa birds breeding in the moorland and the melodious call of ring plovers which look like Faberge eggs in golden sunlight. To top it all, the return from sea of colourful, characterful puffins to feed their young, at almost arm's length in front of us. We lay in wait for hours for a handful of puffins, kept awake by 'the Stones' on a photographer’s iPhone.

Photography continues to be an incentive for me to challenge myself, pack as much as I can into my life, to achieve the unachievable, and to keep as well as possible for as long as possible. There are some images I still haven't managed to achieve, but I guess, 'you can't always get what you want.'

Engaging MPs in Cystic Fibrosis

The Cystic Fibrosis Trust has recently begun a project of getting Members of Parliament to visit their local cystic fibrosis units. To give an insight into how such visits support the Trust's work, Public Affairs Officer Lynsey Beswick has written about the first two visits:

This month as part of my role as  Public Affairs Officer for England, I invited Luciana Berger MP; Shadow Health Minister for Public Health and Rachel Reeves MP Shadow Secretary of State for Work and Pensions to visit cystic fibrosis units in the North.

Last Friday, the Cystic Fibrosis Trust team and I met with Ms Berger, who is MP for Liverpool Wavertree, at Alder Hey Hospital in Liverpool to discuss cystic fibrosis care with the clinicians there.

The staff there spoke of their excellent network of care structure in Liverpool which spans across 12 smaller hospital clinics locally. They discussed the importance of sustaining this model of care within the region.

We were also invited to enjoy the spectacular view of the new hospital building site, which is being built adjacent to the current hospital. The new hospital promises improved facilities including ensuite rooms on all the wards, which will be important to help to segregate children with cystic fibrosis for cross-infection purposes.

As a result of the visit, Ms Berger will champion the work of the local service in Westminster by highlighting concerns raised by the service around the payment by results tariff and psychology provision.

In West Yorkshire, Rachel Reeves who is MP for Leeds West visited the adult cystic fibrosis unit at St James's University Hospital in Leeds the previous Friday. Ms Reeves met with the multidisciplinary team there and the Cystic Fibrosis Trust team.

The key focus was around capacity issues in adult cystic fibrosis care., relating to the rise in the number of adults with cystic fibrosis, due to better life expectancy and treatments. This means that as the population grows, there is an urgent need for the development of new adult cystic fibrosis care services.

The staff  gave a presentation on cystic fibrosis care with an emphasis on the importance of home intravenous antibiotic care at the unit.

We were also keen to discuss the new Personal Independence Payment (PIP) welfare system, which is being rolled out later across the country in stages this year and will affect thousands of people with cystic fibrosis

As a result of the meeting we were delighted that Ms Reeves would like ongoing information on how the new PIP welfare system is affecting people with cystic fibrosis so that she can represent her constituent's interests in Westminster as the rollout takes shape.

“I have never felt more alive” - Running the London Marathon

Ballot places in the Virgin Money London Marathon 2014 were released last month, and we at the Cystic Fibrosis Trust would love those of you who got in to run for us.

It is always inspiring when anyone runs a marathon for us, but even more so when that person has cystic fibrosis. People like Alastair Mavor, who has told us his story in the hopes that you all out there will come and be a part of Team CF.

“I have never felt more alive”.

As I stepped off the train the realisation hit me. The sponsorship, the training, had come down to this one day. I breathed in as deeply as I could. No crackles, no phlegm. I felt so incredibly clear. In body and mind. I sent a text to Mum and Dad.

“Thank you so much for all your support. I feel so excited right now. I love you so much. This really is what living is all about.”
I hated running at school, yet every year from the age of about six, I sat rooted in front of the TV watching the London Marathon, dreaming that one year I could run it.

So it became my gap year goal! The day itself was agony, but at the same time fantastic. A year later, at just 19, I had run my second London Marathon and managed to raise more than £30,000 for the Cystic Fibrosis Trust.
I’m 24 now. I have cystic fibrosis, and in April of this year, I ran my third marathon. I have, on the whole, been lucky with my health. I was probably fortunate to be diagnosed in my first three weeks, meaning I could begin the daily rigmarole of physio without my lungs degrading too greatly at the start. My parents were also incredibly disciplined about giving me my treatments, and it’s something I’ve managed to carry on throughout boarding school and university as a result. One thing that has helped me maintain my lung function over the last few years is my love of running.

I have found few better ways of clearing my lungs than a hard run to shake things up. This winter was one of the wettest and coldest for many years, yet running for my own health as well as training for the event provided another motivation to get out in the snow and churn out the miles. Hitting the trails of the Peak District also gave me relief from the stresses of University Finals!
But the thing which fired me up most was running and raising money and awareness for a charity that is incredibly close to my heart. Without the efforts of the Cystic Fibrosis Trust, and all those who have supported it, I would not be alive today.

Before this year’s race, I kept my condition quiet from all but my closest friends at University. I suppose I was scared it would shape people’s opinions of me. I decided to be more open about it; to raise awareness of the disease, and to show people that I might happen to have a nasty condition, but it wasn’t going to stop me achieving all the things I wanted. I needn’t have worried. The support that came as a result was incredible. People who I barely knew started flooding my Justgiving page with donations. By the time the race began, I had reached over £5,000 and more than 150 donations. 
That instilled me with an unflinching desire to be on the start line, despite hobbling around on crutches due to an achilles injury three weeks before the race!


If you are thinking about a marathon, stop thinking and start doing. The feeling of elation and emotion when you cross that finish line is like nothing else. There were great miles, and horribly painful miles, but the overriding memory of making the final turn around Buckingham Palace, seeing 3 hours 50 on the clock, and running on through a wall of cheering and applause, is one I will never forget.

Have Alistair's words spoken to you? Then please use your ballot place and run for us in the Virgin Money London Marathon 2014. Details are on our website.

Research News from NACFC

Janet Allen, Director of Research, gives her final research perspective on the North American Cystic Fibrosis Conference

Despite it being the last day there is still a buzz around the conference centre, with people scurrying between sessions. The day started off with an excellent plenary talk on cystic fibrosis-related diabetes. It provided a superb example of how to integrate basic science and clinical research to get the best value. 

I spent the rest of the day getting my "fix" on the science around the structure of the CFTR molecule. There is an amazing amount of work across the world trying to understand how a complex molecule like CFTR folds within cells to allow it to function and how mutations in the gene affect that folding pathway. Although this research may seem esoteric, it is this detailed understanding that is the foundation for the discovery of new drugs that will help people with cystic fibrosis.  

One highlight of the morning session was the presentation of a small clinical trial for ivacaftor (Kalydeco) in people who have genetic mutations in CFTR that affect its gating. These are very rare mutations and so standard Phase 3 trials are difficult to perform. Only 39 patients were involved in this trial but the data is promising as the results were very similar to those for people with G551D taking ivacaftor.

You can find out more about cystic fibrosis research and our involvement on our website and through the Cystic Fibrosis Trust Research Strategy 2013-2018.

All Nations With One Goal

With the North American Cystic Fibrosis over and the 4,000 delegates from around the world making their way home, UK CF Registry Manager Elaine Gunn rounds up the success it has been.

The end of the North American Cystic Fibrosis Conference has arrived after a final day of excellent seminars, workshops and a final plenary session.

It has been a fabulous conference, lots of hard work, early starts and numerous out of session registry meetings but the overall feeling of passion to work together no matter where you come from to ensure people with cystic fibrosis get 'gold standard' care is palpable. The research going on around the world is outstanding and listening to researchers passionately describing their work is amazing. 

For me the use of the CF Registries, not only the US one but the UK Registry, in various talks was fantastic. They offer a wealth of data and it is great seeing it being used.

Tomorrow we start the long journey home. I will miss the mountain view walking to the conference centre and the clear, crisp, sunny weather – but feel excited about what is happening in the world of cystic fibrosis. It is a fight we must win, not just in the UK but around the world. All nations, with one goal

Goodbye To Mountain Country!

Chief Executive Ed Owen offers his final thoughts on the North American Cystic Fibrosis Conference

The 10,000-foot, snow-topped mountains that provide such a dramatic backdrop to Salt Lake City seem appropriate as I leave this year's North American Cystic Fibrosis Conference.

Fifty years ago, the challenge facing the families, clinicians and others affected by cystic fibrosis must have seemed Himalayan in scale. Those born with the condition were not expected to live into double figures, and precious little was known about its cause or how to combat its devastating effects.

Today, in the view of many of the scientists gathered here in this frontier city, the summit is now in reach.

Of course, there is considerably more work still to do to reach our goal to beat cystic fibrosis for good. Too many young lives are ended early, too many futures are blighted by this condition, to suggest otherwise. We certainly cannot afford to let up now.

After all, the pipeline of transformational small molecule treatments showing such promise and, in the case of Kalydeco, already making such a difference to some, will not in themselves get us all the way to the top.

New challenges are appearing too, such as 'superbugs' like NTM. Vital issues raised this week also reflect the increasing need to support people with cystic fibrosis pursuing careers, starting a family or coping with the many psychological pressures imposed by their condition.

And improving standards of care so that everyone receives the best quality, personalised care with equal access to drugs and treatment they need will continue to be a driving mission for many years to come.

But the extraordinary progress of the last few years in what people here call "disease modification" must give us fresh hope - and new impetus to increase further our efforts to conquer the cystic fibrosis mountain.

We in the UK, people with cystic fibrosis, their families, clinicians, health professionals, scientists and industry, are playing an important part in this extraordinary challenge. And we at the Cystic Fibrosis Trust are determined to raise our game further at this critical time.

This week has reinforced my view that the global cystic fibrosis community faces a unique window of opportunity at this time. We must seize it now and push on to achieve our goal.

Some years and many obstacles still lie ahead. But we must hope, believe and expect that we will get there.

So it's a fond goodbye to Salt Lake City from me with a huge thank you to the scientists, clinicians and, most of all, those personally affected by cystic fibrosis, for your monumental efforts and achievements.

Janet and Elaine are here for the last day today and will provide you with final thoughts of what has been an inspirational and successful conference.

Learning From Others At NACFC

The North American Cystic Fibrosis Conference is organised by the Cystic Fibrosis Foundation, who are the US counterpart to the Cystic Fibrosis Trust.  Like many other organisations we work with they have become an excellent and indispensable partner in the fight against cystic fibrosis. Ed Owen's latest blog from Salt Lake City gives an insight into the valuable work they have been doing and what we here in the UK can learn from them. 

"There have been tremendous improvements in cystic fibrosis in recent years. But now we need to close the deal."

So said Preston Campbell of the Cystic Fibrosis Foundation at the opening of the North American conference

here in Salt Lake City yesterday.

He was reflecting the great progress that has been made in recent years to increase life expectancy and the quality of life for people with cystic fibrosis - but also the single-minded determination that exists here among scientists, clinicians and others to end cystic fibrosis for good.

We at the Cystic Fibrosis Trust are equally ambitious and we all need to redouble our efforts to achieve this ambitious goal.

Like the Cystic Fibrosis Foundation here in the US, we are currently working on ambitious and inspiring plans that will bring us closer to this ultimate aim.

Bob Beall, the President of the Cystic Fibrosis Foundation, articulated in his speech yesterday what he believed were the three key challenges facing the cystic fibrosis community today:

- to develop transformational, disease-modifying treatments for all people with cystic fibrosis whatever their mutation;

- to ensure those with cystic fibrosis have access to these new therapies and to makes sure their wider value is properly recognised by healthcare systems; and

- to ensure all people with cystic fibrosis have the best quality of care available.

Bob has been with the Cystic Fibrosis Foundation for two decades and has provided inspirational leadership for the cystic fibrosis community here in the US and across the world.

The Cystic Fibrosis Foundation's seed-funding of small molecule work more than a decade ago has produced the tremendous breakthroughs we are witnessing today with Kalydeco and other potential therapies in the pipeline.

There is much we in the UK can learn from the Cystic Fibrosis Foundation’s experience - the need for clear focus and purpose, the value of targeted collaboration with industry and an impactful fundraising offer.

Earlier in the day I attended two sessions - the first focused on supporting the growing number of adults with cystic fibrosis, and the second on what works to improve adherence to treatment.

The morning session covered a wide range of issues including career development, parenthood and depression. The afternoon saw presentations on motivational therapy, the value of social networking and a novel supervision programme in the US called iCARE.

There are many fantastic things going on for people with cystic fibrosis on both sides of the Atlantic. Together we can both improve and transform the lives of all people with the condition.