While we in the UK have been coming together for CF Week 2015 and sharing our stories through the Power Of Us, there has been another important coming together in the fight against cystic fibrosis as the 38th European Cystic Fibrosis Society Conference took place in Brussels, Belgium.
Our Chief Executive Ed Owen, along with colleagues from our Research and Registry teams, attended and joined many from around the world, demonstrating the global effort in beating CF, and here are his highlights of both ECFS and CF Week 2015.
To get to the old Town Hall for the welcoming ceremony of this year’s European Cystic Fibrosis Society conference I had to weave through the many tourists in the cobbled Grand Place in central Brussels. As I approached the entrance, a smiling woman bounded up to me to say hello.
Our Chief Executive Ed Owen, along with colleagues from our Research and Registry teams, attended and joined many from around the world, demonstrating the global effort in beating CF, and here are his highlights of both ECFS and CF Week 2015.
To get to the old Town Hall for the welcoming ceremony of this year’s European Cystic Fibrosis Society conference I had to weave through the many tourists in the cobbled Grand Place in central Brussels. As I approached the entrance, a smiling woman bounded up to me to say hello.
“Thank you so much for joining us,” she said. “It’s a
pleasure,” I replied politely and, assuming she was part of the welcoming
group, told her how delighted I was to be in Brussels with so many others
committed to the fight against cystic fibrosis.
She looked at me quizzically and rather
disappointed. “I am very sorry,” she said, “I thought you were here to
join the Tintin tour.”
Like Tintin, created by Herge, one of Brussels’ most famous
sons, we in the cystic fibrosis community are on a great adventure to beat a
cruel and common villain. Yet ours is not a work of fiction but a real
story of a thousands of people living with a condition that shortens life and
limits freedoms and opportunities.
This week saw two different aspects of how that fight is
slowly being won.
Here in Brussels, the finest scientists, clinicians,
business people and advocates, came together from across the world to share
knowledge, ideas and plans. It is an awesome group working on a range of
research projects, trials, innovations and initiatives to beat cystic fibrosis
– from tackling new and old bugs to understanding the psychological impact of
the condition, to developing breakthrough physiotherapy techniques to
correcting the basic genetic defect.
There was a lot of discussion about Orkambi, Vertex’s newdrug currently being assess by regulators here in Europe and the US. But there was
also a great deal of interest too in exciting new gene modifying therapiescoming through clinical trials from other companies like Novabiotics, a biotech company that the Cystic Fibrosis Trust has been
working to support, and Galapagos.
But this global research effort cannot beat cystic fibrosis
alone. It can only do so with the active support and engagement of the
wider cystic fibrosis community making its voice heard. It is the stories
and insight of those living with the condition and their carers, together with
the collective expression of all supporters, that is helping to change the
world of cystic fibrosis.
That is what CF Week in the UK was all about over the last
few days, and we have heard some extraordinary insights, from Hannah’s blog onMumsnet to Umar’s story on YouTube. By speaking out, telling our
stories, we are helping to make a real difference and demonstrating the
extraordinary “Power of Us”.
As Tintin found, the struggle to beat a determined foe is
rarely easy. But, like the intrepid boy reporter too, we in the cystic
fibrosis community – bringing together the finest scientific minds, dedicated
clinical teams and all those living with cystic fibrosis every day – will win
out in the end.
No comments:
Post a Comment