The Power of Us is Global - CF Week 2015

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.

“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.