Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. Cystic fibrosis comes with challenges, affecting our physical health, mental wellbeing and how we choose to live our lives. But our community is uniting towards the ultimate goal of effective treatment for all.Cystic Fibrosis Trust is the charity uniting people to stop cystic fibrosis.

On Sunday 19th February, I will take on the Barcelona half marathon to raise funds for the Cystic Fibrosis Trust.  I’m not a runner, and the distance will be a significant challenge for me, especially as I’ve recently recovered from an achilles injury which made it hard to stand on one leg, let alone run!

My nephew Xander is my ‘why’. On the 21st of January 2021, aged 4 months, he was diagnosed with cystic fibrosis, a chronic, life-limiting condition affecting mainly the lungs and digestive system.

After the initial devastation, we were told a so called ‘miracle drug’ had been approved on the NHS only months earlier, and it was the biggest breakthrough for CF patients in many years. Quickly though, we learned that Xander has exceptionally rare genetic mutations and is in the 10% - a minority for whom these modulator drugs will not work.  Xander has daily enzyme medication and airway clearance physiotherapy to try to keep him as well as can be, but  as yet, there is not a more effective treatment for him and those in the 10%.

The CF trust are prioritising research on alternative treatments, so that no one is left behind.  It is our hope that Xander will be offered a treatment that allows him to live a life without limits.  

Thank you for reading this far.  If you can afford to give anything, however small, I’d be so grateful and spurred on!