Extracts from a Short and Merry Life - Part Three: Adherence and Commitment

Ahead of tomorrow's book signing at Waterstones in Wimbledon the final extract from 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis' by Tim Wotton is on drug adherence and commitment:

Why would I want to cut corners and miss my medication? Even when I take all my medication, it just about maintains my health – it never cures. I would feel a lot worse if I missed any of my treatment regime, so what’s in it for me to risk that? After all, I’m only as healthy as my last treatment. It is important to control the parts of my illness that can be controlled. Manage the manageable. In rowing terms, I control what’s going on inside my own boat rather than fixate on external factors.

I have calculated that for every 24 hours in a day, at least two hours are spent doing something medical. A positive way to view this is that leaves me with 22 hours to do what I want to do each day so I take pleasure in the hours I have and not the hours I lose.

22 hours for Tim Wotton and 2 hours for CF.

My treatments are something I do to get out the door and get on with my busy life – they are my enablers – they have become a second nature activity like brushing my teeth. This is engrained in my subconscious by constant repetition so that eventually my body begins to remind me what to take and when. This can only happen by taking ownership of the condition rather than relying on others to be my conscience. For me, it’s been a case of building habits and over the years I have become pretty competitive with myself to adhere to the regimen. Conversely I am prone to getting annoyed with myself when I forget any part of my treatment.

If my routine is altered which is likely when I’m travelling, on holiday or in a work conference, it does affect my medical management and I have to focus even harder not to miss any facets of my regime.

In dealing with CF I have tended to match fire with fire. I’m bullish about getting my own way from hospital visits and I’m probably a pain to medical staff at times. I read my own body signals and thus don’t always wait for the doctor to tell me about changing my antibiotics when I already know what drug to take and when to take them. I try to keep on top of the condition and look for new ways to ‘boss’ my illness with changes of drug, alternative therapy or new ways of positive thinking.

I won’t back down.

I one hundred per cent respect my illness, know my many limitations and look to avoid the ‘CF banana skin’ of trying to dismiss it and not take it seriously enough.

A lot of willpower is required to win this ongoing battle. When you get to a certain age you tend to balk at doing things that you just don’t want to do and believe me doing my treatment is the last thing in the world I want to do. I have to knuckle down every day of my life and continually do these unpleasant acts of medication. I only get out of my body what I am prepared to put into it.

I do at times have to bite my tongue when people I encounter complain about their short-term health issue but do nothing about it. Or those that make a big fuss at the dinner table about taking just one tablet. I’ve also witnessed guys who milk their condition or injury for all it’s worth and feed off of the novelty factor. These are often the same people who don’t take any medication to get it fixed but prolong their own agony and that of those around them. I prefer to say nothing and let my actions do the talking. But I’ve had nearly 40 years to get used to my afflictions – I’ve never known anything different.

I have to respect this illness 365 days a year and especially at times when I would rather kick-back and have some time off: Christmas day, birthdays, my wedding day and honeymoon, holidays, travel, before and after work – I don’t get a day off with this condition. The symptoms of CF and diabetes don’t take a day off and neither can I. I can take a holiday but CF doesn’t take a holiday from me. I’ve calculated that if I had just two weeks off from taking all my various medications, I would be seriously ill in hospital.

If I fail to prepare for daily eventualities, I am preparing to be caught out and potentially be affected. Following a ‘just in case’ mantra, I always plan for the next day, work, social commitments and the weather. My work bag is always stocked with my daily pills, insulin and dextrose energy sweets. I bet I’m one of the few men who would go out on a stag do armed with an umbrella so that I don’t get wet and damp! As soon as I’ve played sport or if I get caught in the rain, I’ll take a shower to avoid catching a chill. It’s being spectacularly practical rather than spontaneous. Spontaneity is something that happens to other people who live in a parallel universe to me.

I get angry on a daily basis about my drug regime, but I have learned to channel that anger and frustration. I focus my thoughts on what activity – tube to work, playing sport, game with my son, meal with my wife, night out with friends – I will do once that piece of medication has been completed, rather than on the actual treatment itself. I very rarely vent my anger and frustration with those around me and I’m learning to be more open as I write this diary.

I re-join my body back on the bench. I’m now calm and at peace as I sit in the delightfully calm twilight moment that only really pervades on a still summer’s evening. I think of friends who can just exist without having to put themselves through this form of exercise torture and I envy them. My God, I envy them. Sometimes I feel that ignorance would be bliss.

However tough it is for me to bear, exercise is my version of treading water in the ocean. Once I stop, I’ll drown and that will be it. I’ve literally got no other choice but to keep on going with it. By forcing myself to breathe hard while exercising, I in turn breathe life into my lungs. While there’s still breath left in me, I will continue to run for my very life.

Everyday I’m shaken by my disease but I try not to be too stirred and respond by shaking it back. After all, I’m still here. I’m still running. I won’t back down.

Tim will be signing copies of his book at Waterstones in Wimbledon from 6:30-8:00pm this Saturday. You can purchase 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis' from Austin Macauley and Amazon, as well as WH Smith, Waterstones and Foyles.

The Next Steps for Combination Therapy and Cystic Fibrosis

Ed Owen, Chief Executive of the Cystic Fibrosis Trust, discuss how this week's announcement on the ivacaftor and lumacaftor combination therapy affects the wider landscape of beating cystic fibrosis for good.

The results of the Phase III trial of Vertex’s combination therapy for people with the most common mutation of cystic fibrosis is a further sign of the extraordinary new period we have entered.

Over the last five decades, we have made great progress from the time when cystic fibrosis was a condition that killed most people living with it before they reached the age of 10.

Yet it is only now that therapies targeting the basic genetic defect – the holy grail of so much work since the discovery of the cystic fibrosis gene in 1989 - are becoming a distinct reality. Indeed, Kalydeco (Ivacaftor) is doing just that for those with the G551D mutation already!

Of course, it is important to sound an important note of caution here, not just because the results of the combination therapy for those with two copies of the F508Del gene are not as dramatic as that seen with Kalydeco – and neither is a cure.

There is also still some way to go before this treatment can be available to people with cystic fibrosis, Vertex need to receive a license to market it from the relevant regulatory authorities.  Here in Europe that’s the European Medicines Agency (EMA) which can take many months to assess the evidence that is presented to it.

And even if regulatory approval is granted, there will then be the often protracted process by which each of the four NHS systems across the UK decide whether to fund this therapy or not.

In all, whatever the final decisions of the NHS, this whole process will probably take at least another year, and probably more – and that’s a desperately long time for many.

Those with other mutations will have to wait longer still before transformational therapies come along.  But there is hope in these areas too.

We can afford to be very positive – and our voice as a cystic fibrosis community will play a vital part in persuading decision-makers and manufacturers to enable new treatments of this sort to be funded in the UK.

This week is a further step forward on the road to beating cystic fibrosis for good - but there is still a long way to travel.  In the words of the late Casey Kasem we need to “keep our feet on the ground and keep reaching for the stars”.

For more information on these trial results do read Dr Janet Allen’s blog from yesterday and a great piece by our Special Adviser on Research & Patient Involvment, Oli Rayner 

You can also get more information about the combination threapy from the Trust

Extracts from a Short and Merry Life - Part Two: Positive Attitude

Continuing our extracts from Tim Wotton's first book, 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis', today we look at the difference a positive mental attitude can have:

Is it easy to always be happy rather than sad? Recent research has proven that people really do look on the bright side of life. Scientists have found that humans are unrealistically upbeat because the brain is programmed to remember positive signs and forget about negatives. So it would appear that a ‘faulty’ brain wiring makes us better at processing information supporting our outlook as opposed to facts challenging our beliefs. So my smile behind the frown is my natural default but I’m aware that this has to be sustained, which is the tricky part.

Having a sunny nature has never felt like too much of an act as it comes fairly naturally for me and I feel healthier for being happy and positive rather than being downcast and negative. After all, we use fewer muscles to smile than we do to frown.

I try very hard to have a happy disposition with everyone I meet and in everything I do to counter the seriousness of my ‘bigger life picture’. That morning, being around Katie and Felix, I played down the shocking night I had just endured.

I work extremely hard at smiling, making myself and others laugh, often with cheesy jokes. Having a ‘happy-go lucky’ persona seems to manifest better health inside my body. At work, after a bad night or difficult morning treatment, I’ll go to the extreme of trying to be the happiest person in the room or office. In turn, it means that I don’t allow myself to dwell on the dark moments for too long.

I am a cheeky chap but there’s method to my madness. Life has always felt too short and harsh to take it overly seriously. Dealing with CF is the serious part of my life, so the rest of it needs to be as light-hearted as possible. ‘Sunshine on a rainy day’, I suppose you could call it.

This approach has to come from within and I have to work hard to turn off the mental demons in my head. I start thinking happy thoughts and being happy. I’m convinced that when you possess light within, it is seen externally – people see my light and humour; they see an upbeat seemingly healthy person, not an ill or downbeat person. This has a positive effect on me and the people I come into contact with.

This doesn’t just apply to work situations, but on visits to hospitals, surgeries and chemists. Especially for these mundane health related appointments, I cast aside all negativity and try to be nice, smile, crack jokes – anything that makes the experience more palatable. When I’m down, I firmly believe that laughter is the best medicine and often joke with Katie that “at least I’ve got my health!”

Like some form of non-stop comedian, I look for humour in everything and in anything. The power of laughter and joy helps dissolve disease in my body. It removes the physiological stress that builds up from the burden of a relentless illness.

We all walk in the dark to different degrees and have our own cross to bear; so finding ways to lighten the load is paramount. For me, humour and happiness are my guiding lights to deal with any dark moments.
I’ve yet to meet a person in this life who hasn’t got some difficulty or inner demon to contend with. Everybody hurts to some degree. It’s all relative I guess. As I’m continuously battling the proverbial CF elephant in the room, I do get less worked up about the smaller ‘mice’ sized issues. However, for a lot of people, I assume there’s a propensity to magnify the smaller issues as being larger than they actually are. Either way, what I most definitely know and often say is that life is too short.

Even though I’ve had a troubled night and everything should make me miserable and morose, I see Felix and Katie clowning around and it makes me smile. The cloak of darkness has lifted and the healing light has taken over. The sky outside our holiday home is a rich blue and the sun is beginning to warm our bodies. I’m looking forward to a fun family day at a newly discovered beach – swimming in the sea, ice-creams and most importantly lots and lots of fun and laughter.

JF Kennedy once said, “It’s better to light a candle than curse the darkness.” I know what he meant.

Tim will be signing copies of his book at Watersones in Wimbledon from 6:30-8:00pm this Saturday. You can purchase 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis' from Austin Macauley and Amazon, as well as WH Smith, Waterstones and Foyles

What the Vertex Phase III Results Mean

Following yesterday's announcement from Vertex Pharmaceuticals of the results of the Phase III clinical trial of the ivacaftor and lumacaftor combination therapy, our Director of Care & Research Dr Janet Allen explains the key results.

Vertex announced the Phase III

combination clinical trial results for people with cystic fibrosis carrying two copies of F508del (which accounts for around 50% of the UK cystic fibrosis population). Now the dust has settled from the flurry of excitement, I’ve had a chance to look through some of the details in the text beyond the headline data on FEV1 lung function. What I find striking is the effect of the combination treatment on pulmonary exacerbations, which is remarkable, especially alongside such modest effects on FEV1. This finding on pulmonary exacerbations translates through to significant reductions in hospitalisations (39-61%) and IV antibiotics (45-56%). As we all know, pulmonary exacerbations contribute to continuing decline in lung function for people with cystic fibrosis. Together with the need for hospitalisations and IV antibiotics, this has a demoralising effect on individuals and their quality of life. The data here implies that these events could be halved by the combination treatment.  We have just come off the phone with Vertex where we discussed this exciting data and the team commented that many of its expert panel have also remarked on the beneficial effect on pulmonary exacerbations and how disproportionate it is to the effect on FEV1. Clearly more analysis needs to be completed and we need to have a better understanding of this effect but it is remarkable and shows that FEV1 is not necessarily the gold standard marker for measuring the effect of a drug in cystic fibrosis.

The other point that should not be missed is that this is a landmark scientific achievement. The F508del mutation in CFTR causes this protein to be fold incorrectly, which is a really difficult problem to fix. Many other conditions are caused by misfolded proteins and many programmes have tried unsuccessfully to restore the folding pathways in people. Here, a small molecule has been discovered that affects the complex folding of the protein, CFTR. This is an amazing achievement and shows the real value of linking high quality science and drug discovery with the determination to make a difference. 

The Trust is looking for people who took part in the trial to share their experiences – please email James Barrow, Head of Public Affairs, at james.barrow@cysticfibrosis.org.uk.

Extracts from a Short and Merry Life - Part One: Sport & Fitness

Earlier this month, Tim Wotton published his memoir of living with cystic fibrosis, 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis'. In the run up to his book signing event this Saturday 28 June at Waterstones Wimbledon, we'll be publishing three extracts from the book focusing on three themes. The first of which, is the role of sport and exercise:

Without a shadow of a doubt, a large part of my longevity in my battle to defy CF can be credited to the amount of sport I have played throughout my life; mainly hockey, basketball, tennis, rugby, football and cricket.

In my experience, I have found that regular exercise has become a necessity to keep my lungs ‘tuned’ and it impacts me both physically and mentally. I strongly believe that any activity that exercises the lungs of someone with CF is hugely beneficial.

Exercise is not actually straight forward for most CF sufferers as the build-up of mucous in the lungs means that less oxygen is available which causes problems with breathing and general fitness. It is also an extremely exhausting condition – just think how tiring it is to cough for five minutes non-stop. I find it quite literally knocks the wind out of my sails.

For me, still playing sport, running and competing is the best barometer for how my health is. It also serves as an indication for others, not least my dad, to know that if I’m still able to play, that CF can’t be winning the battle. Indeed, my dad will always ask “How’s your wobble son?” and most old friends tend to lead conversations with “Are you still playing hockey?”

At times, I feel the weight of their hope and expectations on my shoulders. What would they think should I ever reply: “Actually, I’ve had to pack it in as it became too much for me!”

I play on for my own health but also for the positive lift it gives to others. I now feel a tremendous sense of elation on completing any sport as it feels like ‘my Everest’ moment. It’s hard and I do have to get pretty psyched up these days before most exercise. It’s still important for me to compete against relatively healthy and fit people as it serves as my health benchmark.

My lungs do definitely benefit from exercise, even small jogs and I feel more vibrant and alive afterwards. I wouldn’t say the exercise is always enjoyable, but the rewards and positive sensation drive me on. It’s only after I’ve pushed myself during a hockey or tennis match that I feel really ‘alive’. I have had to consistently find the motivation to keep going with my hockey. Few 39 year olds I know are still partaking in competitive sport and they all have their reasons not to – it’s easier not to be active once you have a busy work and family life. Some people need a goal to get running again – something to aim for, like a 10K charity run, marathon or triathlon. I have my hockey.

I am desperate to still be playing sport at 40. Fighting CF gives me the encouragement that few can harness. It’s more than feeling that I have to do exercise, it’s lighting my own internal touch paper to force myself to ‘want’ to do it, which creates my own intrinsic motivation. I focus on both the mental and physical aspects of this desire. Physically, I think what’s more of a benefit to me – running (and enduring a short-term discomfort) or not running (and letting the effects of CF build up). Mentally, exercise is my two finger salute to CF, defiantly declaring “I won’t be beaten. I can do this. I will do this. Just watch me!” 
It’s a simple equation for me to keep playing sport. If I exercise and keep as fit as possible, it’s likely that I will stay one step ahead of the grim reaper. In fact, I would go as far as stating that it’s a matter of my life or death.

Tim will be signing copies of his book at Waterstones in Wimbledon from 6:30-8:00pm this Saturday. You can purchase 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis' from Austin Macauley and Amazon, as well as WH Smith, Waterstones and Foyles.

Reflections From Gothenburg

After four action-packed days in Gothenburg at the European Cystic Fibrosis Society annual conference, Ed presents his ‘top ten’ reflections of the last few days:

We are in a new era of cystic fibrosis research

There is belief among the world’s best scientists and clinicians that cystic fibrosis research has entered a period of extraordinary opportunity with the prospect of drugs and therapies focused on correcting the basic genetic defect. As Jerusalem’s Professor Eitan Kerem said in his inspiring speech at the opening session, "Ivacaftor [Kalydeco] provides belief there is light at end of tunnel for cystic fibrosis." The conference showcased a range of other ongoing research, including a drug made from Norwegian seaweed due to be trialled in the UK and elsewhere this year!

But let’s keep our feet on the ground

It is an exciting period but we must ground our expectations in reality. Even if the results of the Phase 2b gene therapy trial, expected in October, are positive, there is a long way to go before it can be assessed for wider clinical impact. And no one expects the data from Vertex’s Phase 3 trial of a combination therapy of Kalydeco and lumacaftor (VX809) for those with two copies of the D508F gene, due to be published in a few weeks’ time, to be as dramatic as Kalydeco for those with G551D. There is much to be done, but this conference has reaffirmed my belief that we are making significant progress towards our goal of beating cystic fibrosis for good.

Don’t forget the simple things

While much of the attention of the cystic fibrosis community is on this transformational research, there is much more we can achieve by helping to prevent and manage the symptoms of cystic fibrosis. A very good session I attended talked about the importance of exercise for all people with cystic fibrosis. The US’s Anne Swisher said that kids and teenagers with cystic fibrosis should be aiming to do at least one hour of moderate to vigorous activity a day, while adults should aim for 150 to 300 minutes a week. Sweden's Margareta Sahlberg urged parents to start their children doing regular physical exercise as soon as possible – and always with a smile!

We have fantastic health professionals in the UK

Seeing British clinicians and health professionals like Stuart Elborn, Di Bilton, Jane Davies and Tim Lee leading discussions and debate on the major issues at the conference this week, and the esteem in which they are held across the world, reminds me how lucky we are to have such a group of committed and dedicated professionals working to improve and transform the health of people with cystic fibrosis.

But those with cystic fibrosis and their carers are experts too

Those living with cystic fibrosis every day have extraordinary knowledge – and the NHS needs to do more to ensure people are shaping the way their care is provided. Dutch psychologist Yvonne Prins, who also has cystic fibrosis, gave a thought-provoking talk about creating “person-centred” care to put the needs, wellbeing and interests of those with the condition centre-stage rather than as merely recipients of clinical treatment. She suggested that clinicians and health professionals needed to ask themselves if, when they saw someone with cystic fibrosis in clinic, they saw a patient, a pair of genes or a person. Only if it was the latter could they begin to properly help develop a form of care that understands the emotional complexity of living with this lifelong condition.

We can be proud of what the Cystic Fibrosis Trust is doing

The Trust needs to constantly improve what it does to ensure it has the maximum impact on those we are here for. It was heartening to speak to a range of cystic fibrosis organisations from across Europe that want to learn from what we are doing, particularly on research and clinical care. The UK CF Registry is a great example, and the work to use the registry in partnership with companies like Vertex and Pharmaxis to help study the safety of new drugs being introduced in UK clinics got a great deal of interest at the conference.

But there is much more we can do

I was able to use the conference to meet a number of companies who we might work with to help develop new research opportunities for people with cystic fibrosis.  The Cystic Fibrosis Foundation in the US – who we are working with on a number of fronts - has led the way in this regard, and there is more we can do. It was good to see Novabiotics represented in Gothenburg. They are a UK-based bio-tech company we are now in partnership with to trial a drug to treat lung inflammation, and I want to see more of this as we deliver our research strategy.

We need to co-operate and collaborate to achieve more

These conferences help build and cement important relationships. There is a great deal that the Trust can do alone, but there is so much more we can do working with others – whether cystic fibrosis charities or companies and other groups. If we can use our expertise and resources to leverage additional funds and know-how into cystic fibrosis then we will. So expect more cooperation at a European level to access vital EU funds to research key areas of cystic fibrosis, and help ensure more clinical trials can take place when needed.

The voice and experience of those with cystic fibrosis can change the world

We must never forget that for all the extraordinary expertise within the clinical and scientific world, it is often the voice and stories of those with cystic fibrosis that make the difference. That was what made the difference on ensuring Kalydeco was made available to all eligible across the UK, as well as Manitol, Colobreathe and other new therapies. It will be so again when other drugs appear – and as we work to shape a healthcare system that puts the interests of people with cystic fibrosis first.

Let’s look forward to next year

A lot will happen in the 12 months before the next ECFS conference. We will be working very hard to make a significant contribution to the change occurring in cystic fibrosis and to improve our work for people here in the UK. With the tremendous support of the wider cystic fibrosis community, I am confident we can achieve a great deal. I am also relieved that the next conference is in Brussels which is much easier to get to!

A First Time View of ECFS Conference

Today's blog from ECFS Conference comes from James Barrow, our Head of Public Affairs, who is first time attendee to the event

It is my first time at the European Cystic Fibrosis Society (ECFS) annual conference. The atmosphere is friendly and optimistic with a strong sense of community.

Yesterday I attended the Opening Ceremony led by Johan Mostrom, Chairman of the Cystic Fibrosis Association of Sweden. As part of it Ulrica Sterky - a parent and Chairperson of the Local Liaison Committee, gave a personal account of her family’s journey with cystic fibrosis since the birth of her son in 1982. She highlighted the positive changes during his lifetime and reminded delegates of the importance of putting people with cystic fibrosis at the heart of research.

I then met Orla Tinsley, a journalist and author who has successfully campaigned for the rights of cystic fibrosis patients in the Republic of Ireland. It was fascinating to hear how the power of personal stories made cystic fibrosis a national issue in Ireland and improved standards of care. Very inspiring.

This morning I met with Vertex Pharmaceuticals to discuss the drug pipeline followed by sessions on ‘New Psychological Approaches and Transplantation - Challenges and Hopes’. 

Psychologists from across the globe discussed the need for a holistic approach to psychotherapy and evidence to support the effectiveness of e-help and group methods. 

During the transplantation session EU statistics showed that the UK has the highest survival rates post-lung transplantation but the second longest waiting time pre-transplantation. I was interested to learn that Germany recently introduced a lung allocation system, similar to the one we are campaigning for, which reduced waiting list mortality from 22% to 14%.

Next is our meeting - the UK Cystic Fibrosis Trust. A great opportunity to talk about the work we are doing. Then onto a workshop about ‘Screening and Diagnosis’.

Setting the scene for ECFS

As the first day of ECFS Conference draws to a close, Ed Owen, Cystic Fibrosis Trust Chief Executive, sets the scene for what the next four days will mean for the cystic fibrosis community across Europe and beyond.

I arrived in Gothenburg, Sweden’s second city, yesterday evening to take part in the annual European Cystic Fibrosis Society conference.

It is an extraordinary event that runs for four days with clinicians, scientists and bio-pharma companies from across Europe and elsewhere congregating to discuss crucial issues relating to cystic fibrosis research and care.

And it is a vital opportunity for me and colleagues to build relationships with key people and organisations to assist the Trust’s work to improve and transform the lives of people with cystic fibrosis in the UK.

So last night I caught up with my equivalent in the German cystic fibrosis charity, Andreas Reimann, to discuss how we can work together in Europe to boost the number of clinical trials to accelerate the development of new therapies and treatments. Today I am meeting other associations, and key clinicians who operate as part of the European Clinical Trials Network.

Alongside this and the many seminars and workshops that are held at the conference I also have meetings booked over the next few days with a series of pharmaceutical companies to discuss cooperation in key areas of research – and we also have a meeting with the many UK-based clinicians here this week to discuss how we make sure the relationship between the Trust and health professionals is working effectively for the good of all people with cystic fibrosis.

Some weeks ago there was talk that this conference might be the occasion when Vertex revealed the data from its Phase 3 trial of its combination therapy of VX-809 (lumacaftor) and Kalydeco (ivacaftor) for those with two copies of the D508F gene. Unfortunately we are going to have to wait a few more weeks for that, as the company’s CEO, Joe Leiden, told me when he was in London last week.

But, as with all cystic fibrosis conferences being held at this time, there is a collective sense of cautious optimism among all those here with new therapies and treatments offering the potential to have a fundamental impact on those with the condition, and better understanding to further improve the way the symptoms of cystic fibrosis are treated.

We are determined to ensure the Trust plays its part in making this happen. This week will contribute to helping us do so.

Gearing up for ECFS

Four members of staff from the Cystic Fibrosis Trust have travelled to Sweden in order to attend the European Cystic Fibrosis Society's annual conference, to meet,engage and collaborate with colleagues from across the continent in the fight to beat cystic fibrosis for good. Over the coming days we will be bringing you updates from those there. Starting us off is Dr Janet Allen, Director of Research & Care.

It’s June so that means it is ECFS – the major European meeting for cystic fibrosis. The conference, which this year takes place in Gothenburg, Sweden, starts properly tomorrow with an opening plenary session. The following days are packed with sessions from first thing in the morning through to the evening, until Saturday afternoon.

I arrived a day early to represent the Cystic Fibrosis Trust on behalf of Ed Owen at a strategic meeting of all the cystic fibrosis organisations across Europe. ECFS is an excellent opportunity to meet colleagues from these organisation to see how we can work better together and maximise the opportunity to secure European funds to benefit cystic fibrosis research. The EU research programmes are run on a seven-year cycle and last year, the EU published its blueprint research strategy 2014-2020. This time, the EU has been a bit more adventurous in its title and instead of being called ‘Framework 8’, this strategy is titled ’Horizon 2020‘, which perhaps reflects a more aspirational view for research. It is important that we work together to improve the chances of securing part of the EU research budget, which , although enormous, covers all aspects of science and medicine. It was good to hear of the plans of the other cystic fibrosis organisations and see the opportunities for a combined assault on Brussels. It was also great to have an update on the European Clinical Trials Network. This network links large cystic fibrosis centres in five countries in Europe – sharing knowledge and experience to review trial protocols to try to troubleshoot before the trial starts recruiting.