Hi,
I'm Alex, I have cystic fibrosis and I turned 23 this year, you might remember
me from the book about my life ‘A boy called Alex’.
Having
left university last summer, I'm now living in London with my two brothers and preparing for
life as a musician. My health has fluctuated wildly over the last four years,
so this year I'm focussing on getting stable! Without the burden of a degree
and the intensity of singing seven services a week in a choir, I seem to be
reaping the benefits of a calmer life!
All
my life my family and I have tried to support the Cystic Fibrosis Trust as best
we can. We are part of thousands all over the country who are constantly
fundraising in order to continue the excellent research taking place in the UK and abroad.
Such research has meant that positive stories about cystic fibrosis are
becoming more and more common. The introduction of Kalydeco has been
transformative for many patients with
G551D, some of whom are waiting for a lung transplant.
The
re-launch of the Cystic Fibrosis Trust as a brand will undoubtedly raise the
profile of the Trust as it bids to continue raising awareness of a disease
which has such a devastating effect on so many people. I hope you'll agree that
the Trust does outstanding work..I just hope that this continues so that as
many people as possible can learn about - and support - their incredible
efforts.
Alex
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