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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