Inside the work of our Trustees
Our volunteers, Trustees and staff work with people affected by the condition to champion the cause and improve the lives of people with CF.
As a member of the Board of Trustees, you will have specific statutory duties, such as ensuring that we comply with charity and company law and use our resources responsibly to achieve our aims. Trustees serve for three years with the option of a second term.
Hear from some of our current and past Trustees to find out more about why you should apply.
Michael Winehouse (Trustee from 2015-2021)
Michael joined the Board in March 2015, bringing his experience of living with cystic fibrosis. A fundraiser who has worked in the charity sector for years, Michael has taken on a number of challenges to raise funds for the Trust, including running the London Marathon, skydiving and playing in charity football matches.
Why did you decide to become a Trustee?
As a fundraiser in the charity sector, being able to support the Trust that has given me so much support felt important. It was amazing to impact the lives of people with CF and help the Trust deliver their work and have more impact.
What are you most proud of from your time at the Trust?
Being a Trustee during the delivery of Orkambi and Kaftrio was an absolute career highlight. It’s not the end, but for so many of us, it’s a game changer, and delivering it for people with CF, their families, and their community is absolutely massive. It’s positively impacted so many, including myself, and I’ll never forget these last couple of years.
How has the Trust supported you in your role?
Having a group of expert peers with different skills meant it was always a learning experience. Hearing from clinicians, lawyers, brand experts, and media pros has helped my career become more well-rounded. Being at an organisation that understands what you’re going through means that you feel listened to and your opinion is valued. I was always supported to be authentic and honest and share views and feelings I might not have been able to share elsewhere.
There’s never been a more interesting time to be part of the Trust.
Michael Winehouse
Tell us a bit about how you were able to work flexibly in this role.
As a Trustee, you meet every few months. Before hybrid working was a big thing, the Trust has always allowed and encouraged flexible working. The hybrid option has always been there.
What would you say to someone who’s thinking about becoming a Trustee?
Do it. You can have a real impact on people’s lives. Being part of the board means you can drive real change, which should be enough to make you want to be a part of it. What comes next is the great unknown for many people with CF, and I know I am keen to see what the Trust does next, particularly in supporting those who can’t benefit from modulators. There’s never been a more interesting time to be part of the Trust.
Sophie Pierce
Sophie was diagnosed with CF at three months old and had a relatively normal childhood. It wasn’t until she became an adult that her health started to worsen, but luckily in January 2020, Sophie was entered into a (double-blind) Trikafta drug study. Participants were given either Trikafta or a placebo (another modulator drug that was coming on the market). After six hours, it was clear that Sophie had received what would become Kaftrio after going through ‘the purge’. Her lung function went up to 70%.
Sophie has taken on several challenges to fundraise for the Trust, including Great Strides 2023. Her next challenge is a 50-day row, 3,200 miles across the Atlantic.
Why did you decide to become a Trustee?
Because I wanted to be part of a bigger conversation around CF and advocate for the community. I wanted to support and be part of a charity that I feel like I’ve directly benefitted from.
What are you most proud of from your time at the Trust?
There are a lot of things to choose from. Overall I’m proud of being part of the conversation and shaping how the Trust supports the CF community. With my social work background, I know how important it is to respond to the community’s needs. I was involved in shaping the new advertising campaign, and I really appreciate getting to input on projects like that to ensure CF is represented honestly and fairly.
There’s a nice atmosphere, and it’s a welcoming space where your contributions are valued.
Sophie Pierce
How has the Trust supported you in your role?
When I started, the other Trustees touched base and made me feel welcome, giving me space to understand what was happening and get my head around everything. That was really helpful. There’s a nice atmosphere, and it’s a welcoming space where your contributions are valued.
Tell us a bit about how you are able to work flexibly in this role.
There’s a lot of flexibility. I live in West Wales, and it’s not been a problem - there’s flexibility around virtual meetings and not having to attend every meeting if you have other commitments. Some people have more time than others, so you can get involved with as much as you want.
What would you say to someone who’s thinking about becoming a Trustee?
Do it! We really welcome having new people onboard with new ideas and skills, and it’s a positive experience and thing to do. It’s a chance to help the CF community in a real way.
Joanna Barret
As a parent to two children with CF, Joanna has been involved in the Trust for a number of years, but in 2019 after seeing a call out for Trustees in the policy area, she decided to apply. Joanna became an official Trustee in 2020 and has been heavily involved ever since.
As well as her involvement in the Trust, Joanna is also part of the policy team at the NSPCC.
Why did you decide to become a Trustee?
I wanted to be more involved in the community. It’s such an individualised disease, and the nature of CF makes it so personal, so I wanted to learn more and give back to the community by being more active. The geographical breadth was also important to me, and representing the four nations by being a Scottish voice on a UK table was another reason that attracted me to the role.
What are you most proud of from your time at the Trust?
Helping to steer the organisation during covid. It was such an unpredictable time, and everyone was worried about fundraising and their survival. We couldn’t be fragile at the time when people needed us most. Being a source of advice and support during that unprecedented time of shielding and worry was so important.
Don’t doubt yourself – you’re exactly the type of person they’re looking for.
Joanna Barret
How has the Trust supported you in your role?
There was an excellent induction process, meeting representatives from different directorates and teams and learning about the breadth of the organisation. The sheer volume of what the Trust does can’t be seen from an outside perspective.
Tell us a bit about how you are able to work flexibly in this role.
The Trust is incredibly flexible in terms of physical presence. Sometimes the commitment might put you off if you already have other obligations, but I have always felt supported, and everyone is aware of the additional time pressures I have on my plate.
What would you say to someone who’s thinking about becoming a Trustee?
Don’t doubt yourself – you’re exactly the type of person they’re looking for.
About the role
- Closing date for applications: Monday 12 June 2023, 5pm
This is a voluntary role that is unpaid, but you can claim reasonable expenses, such as travel to attend meetings in person.
We are looking for new people with the following professional experience to join our Board:
- health data collection and analysis
- clinical experience as a part of the CF Multi-Disciplinary Care Team
- marketing and communication
- technology and digital transformation
- finance and accounting
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