“This challenge is for those people who may be feeling the same despair and hopelessness that I felt”

I have CF, but unlike the majority of people with the condition, my genetic mutations meant I was not able to benefit from the life-changing modulator medicines that have transformed the lives of many people with CF in recent years. 

For almost five years, I watched as these treatments dramatically improved and stabilised the health of others, while my own condition continued to decline. 

Between 2023 and 2024, my health declined significantly. I spent long periods in hospital and ultimately had to step away from my role as a solicitor; a career I had dedicated so much of myself to.  

I was no longer able to plan with any certainty, never knowing if I would be well enough to follow through. On the occasions I did make plans, they were often cut short by further hospital stays. I missed my daughter and I worried about her possible future. 

In 2024, my lung function dropped to just 34%. At the same time, other treatment options were also closed to me. Gene therapy trials were not an option due to the type and severity of bacterial infections in my lungs. I was also told that a lung transplant would not be viable in my case. 

Being faced with those limitations was overwhelming. After years of advocating for others in my professional life, I found myself unable to overcome the barriers that were now directly affecting my own survival. 

At my lowest point, I decided to advocate for myself in the same way I had always done for others. I began to research the science behind CF at a much deeper level. If modulators were thought not to work for my mutations, I wanted to understand exactly why.  

Because my gene type is extremely rare, there was very little evidence available. It raised an important question: how could we be certain these treatments wouldn’t work, if they had never truly been tested for people like me? I had a little girl who needed me, so I had to know. 

I started to gather my own evidence. I reached out to charities, laboratories and clinicians across the UK, Europe, America and Canada. I wrote emails, followed leads, and pursued every possible avenue. Many people responded with kindness and support, and when they couldn’t help directly, they pointed me in the direction of someone who could. 

My journey eventually led me to a specialist laboratory in Paris, where my cells were tested to see whether they might respond to modulator therapy. At every stage there were obstacles. I crossed my fingers and hoped... and I kept going. I pushed, I questioned, I advocated, and I refused to accept that there were no options left. 

In 2025, without any expectation, I started my own, heavily monitored, individual trial of Kaftrio. After a month, my lung function increased to 60%, and my inflammation and infection markers fell to a normal level. Not long after, I was able to return to the legal profession. In December 2025, NHS England agreed to fund my ongoing use of Kaftrio. 

Why I’m fundraising 

My journey is just one example. There are now new treatments available to people with CF, including Alfytrek, which was approved in the UK last year. I would encourage anyone who thinks they might benefit from Alfytrek or other modulators to speak to their CF team about this. But there are still some people, particularly those with rare genetic mutations, who are unable to benefit from the treatments that have transformed so many lives. 

I’m taking on this challenge to help raise awareness of this group, support research for rare mutations, and ensure that people in this position know they have not been forgotten. This challenge is for those people who may be feeling the same despair and hopelessness that I felt. 

If you have the right people behind you, you can move mountains, and whilst I am still not well enough to climb one, I would like to use my experience positively. I want to be able to offer reassurance to those who might be feeling left behind, that they do have people behind them, still looking into this, still looking for treatments that will help them – charities like the Trust, scientists, pharmaceutical laboratories all over the world. They have people behind them. They have my voice behind them. 

A big thank you to Michelle, and all of the Shoreline Striders, for taking on this challenge for the Trust. 

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