Some reflections on my time as Chairman of Cystic Fibrosis Trust
What are some of the highlights of your time at Cystic Fibrosis Trust?
In 2019, shortly after joining the board, more than 200 members of the CF community, along with MPs, demonstrated in Parliament Square as part of the ‘Access to Medicines Campaign’.
Little did we realise that within a year, CFTR modulators would be made available. It gave me one of the notable, personal memories, of my time when I attended 10 Downing Street with a CF family to meet the Prime Minster to recognise this breakthrough. He left our meeting to go to the Commons to call the 2019 election. Quite a day!
There is also the success of initiatives such as the 2023 launch our Work Forwards Programme to provide those with CF employment and career support. Or reaching the total of 6000 enrolled in our Clinical Trials Accelerator Platform, as well as fundraising for Wear Yellow Day reaching a cumulative £1 million in 2026!
The progress of the last eight years results from the commitment and hard work of everyone involved. Talking of commitment, it even includes, as just one memory amongst many, the example of one of my colleagues, living with the challenges of CF, rowing the Atlantic! Or should I pick out our bakers, marathon runners or mountain climbers? There is so much to be inspired by.
Why did you join the Trust?
It was all because of a bubbly, excitable and delightful 3-year-old who came to my daughter’s third birthday party. They were at school together, in the end right through until the age of 18. My daughter is now in her mid-40s, so it was a long time ago.
However, after that party I learnt that Louise had been born with something called cystic fibrosis. The consequences of this were difficult to come to terms with. Both the daily challenge involved in treatment as well as understanding what the longer-term reality for the aspiration of a ‘life unlimited’ would be. Louise died just around her 21st birthday.
When I was approached about the Chair role, I remembered Louise and that third birthday party. That’s my link. Her memory. Her inspiring struggle.
What are your hopes for the future of CF?
Since 2018 so much has changed. In that year we launched our groundbreaking Innovation Hub partnership with the University of Cambridge and followed this, in 2024, with our Translational Innovation Hub Network in partnership with the medical research charity LifeArc.
But there is still so much more to do to meet our aspirations for a better life for everyone living with CF. We want to ensure we reach everyone and no one is left behind. That will require funding. That will require continued support.
I can think of no better successor as Chair than my colleague Michelle Shore. She has been a colleague on the board for almost all my time and understands the challenges but also the possibilities as she was not originally eligible for Kaftrio and knows, first hand, what being left behind feels like. But that is her story.
Any final thoughts?
Cystic Fibrosis Trust will be a difficult organisation to leave. It has been a great privilege to be part of this terrific organisation. and as I have often said to others, ‘once Cystic Fibrosis Trust then always the Trust’!
I now hand over with a feeling of great hope for further progress in the future to not only our first female chair but also our first person with CF to take the Chair role.
It has been a thoroughly rewarding experience. My thanks to everyone I have met and worked with.