Over 11,000 people have cystic fibrosis in the UK, but it’s still widely misunderstood. Is that the condition where you cough a lot? Is it like asthma? Is that the one where you have to bash the chest? Is it contagious? But you don’t look very sick! The CF community will have heard them all! So in this special episode to mark CF Week, we're going to be talking about the actual reality of living with a life-limiting condition like CF. Joining Lucy for a chat is Emily. Emily is 22 a...

To mark Clinical Trials Day (20 May), we’re excited to be teaming up with US-based non-profit Emily’s Entourage on this episode of CForYourself. Started by Emily Kramer-Golinkoff in her parent’s living room, Emily’s Entourage (EE) aims to speed-up lifesaving research and drug development for people with cystic fibrosis (CF) who do not benefit from current modulators. “At Emily’s Entourage, we believe that every single person with CF deserves a lifesaving breakthrough, no matter how rare their...

This year, Cystic Fibrosis Trust is celebrating 10 years of the Helen Barrett Bright Idea Awards. The award was established in memory of Helen Barrett, an entrepreneur with CF who, together with her partner, launched a successful gym that is still thriving today. From dog grooming businesses to clothing brands, scriptwriters to bakers, over the years our Helen Barrett Bright Idea Awards have helped many people kickstart their dream career, providing financial support to adults with CF w...

Work can be important for many reasons – our financial security, as part of our identity, for our mental health, our social lives, and to give us confidence. In the first of two episodes on work and CF, Lucy has a tea and catch-up with Charlotte, who has CF herself and works in HR. She shares her experience of managing work and health, discusses how to explain CF to colleagues, and offers some really useful tips around reasonable adjustments in the workplace. We also hear from Jimmy, wh...

As it's 'FeBrewary', in this month's episode Lucy hosts her own virtual tea party on the pod. Joining her for a brew is David Ramsden, Chief Executive at the Trust, and our supporter Paul, who is 70 years old and has CF. This month also marks the end of our 60th anniversary year, so Lucy, David and Paul will be chatting about the progress we’ve seen over the past 60 years and reflecting on what’s changed for the CF community in that time. They'll also take a moment to look to the ...

Many of us might have made a new year’s resolution to take up a new exercise in 2025, or maybe you have a sporty challenge in your sights. So in the January episode of CForYourself we're talking all about staying active with cystic fibrosis. Lucy is joined by Matt, a personal trainer and running coach with CF. Matt has run marathons to raise money for Cystic Fibrosis Trust over the years and has recently worked with us to develop a running guide for people with cystic fibrosis. Matt sha...

In this episode we're talking all about navigating a new cystic fibrosis (CF) diagnosis. Our host Lucy sits down for a virtual tea and chat with Jade, whose 8-year-old daughter Penelope was diagnosed with CF at two days old. Jade, who recently featured in our new parent pack, talks about some of the emotions she felt when they received the diagnosis, her advice for other parents, and how she explains CF to Penelope. Lucy also catches up with my own mum, Jill, to talk about her work a...

As access to new treatments increases across the community, we have seen real progress for people with cystic fibrosis. For many, lives are getting longer and healthier and this means new doors are opening. One area which has seen significant change, is the number of people with CF becoming parents. The latest UK CF Registry data revealed 116 women had babies in 2023. More than double the number from 2020. Earlier this year, Cystic Fibrosis Trust announced the exciting news that...

Everyone going through the transplant process will have a different experience and journey. Adjusting to life after an organ transplant can bring new opportunities, but also new challenges. This can be complex to navigate, both practically and emotionally. To mark Organ Donation Week, our host, Lucy, has a virtual tea and a chat with Zanib Nasim, to talk about her experience of having a transplant. In an emotional and honest conversation, they cover adjusting to life post transplant, ...

In this special CF Week edition of CForYourself, our host Lucy goes behind the scenes at Cystic Fibrosis Trust. To mark our 60th anniversary, she chats to some of the team to hear about their role, the changes they’ve seen in their time at the Trust, challenges the community are facing, and hopes for the future. We hear from Belinda who works in the research team, Sangeeta, Welfare and Rights Advisor, Community Fundraising Manager Jess, and Eilidh, our Social Media Officer. An inspir...

In episode seven, Lucy has a virtual catch-up with Tilly, Rosie and Tehya from the Trust’s Youth Advisory group, otherwise known as YAG. They talk about growing up with CF, managing friendships, transitioning from primary to secondary school, navigating high school with CF and so much more. We also hear from Ellie Mindel, Lead for Children and Young People at the Trust, to find out a little bit more about the YAG programme and how people can get involved. Read the full episode transcript. F...

In episode six, Lucy has a virtual catch-up with Cystic Fibrosis Trust ambassador and former star of Made in Chelsea, James Dunmore, who sadly lost both of his sisters, Lucinda (19) and Jodi (22) to CF when he was a young boy. They chat about his work with the Trust, his wonderful sisters, coping with grief and his experience going through the process of carrier teasing to find out if he is a carrier of a faulty CF gene. We’ll also be hearing from Becky Kilgariff, Joint Head of Information, S...

In episode five, our host, Lucy, talks all things research with Dr Laurie Smith from the University of Sheffield, who specialises in understanding how the lungs of people with CF are affected by the condition and Dan Beever, who has CF himself and works to ensure that patients are involved in the purpose, design and implementation of research studies and clinical trials. They chat about the first new Strategic Research Centre (SRC), Pulmonary Magnetic Resonance Imaging for Cystic Fibrosis (MA...

In episode four, our host, Lucy sits down with Jack Kinsey an interior designer from Norfolk, who appeared in series four of BBC Interior Design Masters, where he was awarded second place. They chat about his passion for design, his CF journey, appearing on TV and so much more! We also hear from Bekcy Kilgarrif, joint head of Information Support and Programs at Cystic Fibrosis Trust to give us the lowdown on the Trust's Work Forwards programme, which offers free tailored careers information, ...

In episode three, our host, Lucy sits down with Lyndall Grace, star of season 10 of Married at First Sight Australia to chat about growing up with cystic fibrosis, keeping fit, opening up about CF in relationships, gaming, her future plans and so much more! At 7.15, Lyndall mentions she got an infection called C diff. This refers to Clostridium difficile, a type of bacterial infection that colonises the gut in susceptible hosts and can cause diarrhoea. We also hear from Matthew Delooze, Help...

People with CF are living longer than ever due to advancements in effective treatments and care but the aging process can also bring its own challenges and issues to contend with. To mark Menopause Awareness Month, our host, Lucy sits down with 59 year old Jane, to talk about her experiences of going through the menopause, her top tips and the need for more awareness and information about CF and menopause. We will also chat about the need for geriatric and menopause specialists within CF team...

You might not be able to see CF or what it does to the body. But it’s not invisible to the 10,800 people in the UK whose lives are dominated by it every single day. The challenge of living with cystic fibrosis is invisible. Except for the ones who live it. Kieron Smith, 26, was the face of our latest #CFTruths awareness campaign, ‘You don’t see CF’, that launched across the UK in April this year. As part of this, his face appeared on billboards and adverts to raise awareness of the realities ...

CF week 2023 is all about celebrating the incredible progress we’ve already made in CF research, and looking forward to the breakthroughs we can make in the future. In this extra special episode, our host, Lucy, chats with two guests, researcher Alice Collins and her brother Alexander, who has CF, about their work, life and childhood. We also hear from Dr Paula Sommer, Director of Research and Healthcare Data at the Trust, about the importance of funding our research here at Cystic Fi...

In this special bonus episode of CForYourself, we are celebrating the start of our FeBrewary fundraising campaign. We know this can be a miserable time of year for many people: Christmas has been and gone, the weather’s cold, and spring still seems so far away. FeBrewary is a chance to brighten those gloomy days. Here at the Trust, we are encouraging the community to come together with friends and family during February– in person or online, host a tea party, and make your cuppa count. ...

Advances in our understanding of CF mean that there are many more effective treatments out there, so people with the condition are living longer than ever. But the aging process can also bring its own challenges and issues to contend with. As well as physical concerns as your condition changes over time, there can be emotional, social and financial impacts to think about too. Whether that’s planning for a family, the burden of care, or concerns about how you can provide financially for ...