Saturday 19 October 2013

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.

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