JUN 9

CForYourself: What I wish people knew about cystic fibrosis

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 and a university student. She was diagnosed with CF at three months old. They talk about all the things they wish people knew about CF, as well as sharing what it’s like to live with an invisible condition, tips for explaining it to friends and family, and why raising awareness is so important. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.CF Week - Find out more about CF Week and Wear Yellow Day, and how you can get involved. Cross infection - Cross-infection, or cross contamination, occurs when one person spreads an infection to another, either directly or indirectly. Find out how cross-infection affects people with cystic fibrosis, and what is done to combat the issue.Read Emily's blog on life with cystic fibrosis. Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast.

38 min

MAY 20

CForYourself: Clinical Trials Day and CF research

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 mutation,” says Emily. Our host Lucy enjoys a (virtual) tea and catch-up with Emily, who chats all about her CF journey, the inspiration behind EE, and her hopes for the future. Also joining Lucy is Dr Maya Desai, a trustee at Cystic Fibrosis Trust and a consultant respiratory paediatrician, who has worked with children with CF since the early 1990s. Maya has been involved with the Trust’s Clinical Trials Accelerator Platform since its launch in 2017. She is particularly passionate about increasing diversity in clinical trials and ensuring everyone with CF has the opportunity to access life-changing new treatments. A big thank you to Emily and Maya for this insightful and powerful chat. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.CF Forum - Join the conversation on our Forum and connect with other people with CF.CF Clinical Trial Connect - Find out more about a global patient database designed exclusively for those unable to benefit from modulators, with the aim to make it easier to connect people with relevant clinical trial opportunities.Trials Tracker - Search CF clinical trials currently recruiting in the UK. Our research goals - Read more about our research goals and the CF research we are funding. Join our Involvement Group to share your lived experience and insights to influence the work of the Trust and future research.

45 min

MAY 6

CForYourself: Self employment and the Helen Barrett Bright Idea Awards

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 who dream of starting their own business. In today’s episode, Lucy chats to three incredible winners of the award. Maggie, who won the 2024 award and runs a private chef business. Polly, who is a past winner and a published author, and Jimmy, who is now part of the team at the Trust who helps run the awards, having won it himself back in 2022. In a wide-ranging conversation, they chat all about their CF journey, their businesses, and how being self employed helps them to manage cystic fibrosis. This year’s awards will be open to applicants in the summer, keep an eye on our social media for more information coming soon! For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.Self employment - If you’d like more information on self employment, check out our dedicated website hub.Helen Barrett Bright Idea Awards - Read more about the awards and previous winners. Work and CF - Our Work Forwards programme is here to empower people with cystic fibrosis to fulfill their career dreams and aspirations. Find out more about Work Forwards and how we can support you.CF Forum - Join the conversation on our Forum and connect with other people with CF. Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast.

35 min

APR 17

CForYourself: Employment and cystic fibrosis

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, who is Work Forwards Programme Manager here at Cystic Fibrosis Trust. He answers some of your questions on work and cystic fibrosis, and explains more about Work Forwards, our programme of employment support for the CF community. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.Work and CF - Our Work Forwards programme is here to empower people with cystic fibrosis to fulfill their career dreams and aspirations. Find out more about Work Forwards and how we can support you.CF Forum - Join the conversation on our Forum and connect with other people with CF. ACAS - Can give you free advice on your rights and help you to resolve discrimination disputes with your employer.Find out more about CForYourself at www.cysticfibrosis.org.uk/podcast.

48 min

FEB 20

CForYourself: 60th anniversary special with Chief Executive David Ramsden

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 future, and the work that needs to be done to ensure everyone with CF can live a long and full life. "We've done so much as a community, but we're going to keep running hard to do more," says David Ramsden. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.60th anniversary year - Find out more about how we've marked out 60th anniversary year. Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.CF genetic therapies - Find out what they are, whether they might benefit you and learn more about genetic therapy clinical trials.Paul's story - Read more about Paul's CF story. FeBrewary - Make your cuppa count this FeBrewary. Donate the cost of your brew and help raise vital funds, so we can continue to be there for everyone with CF. CF Forum - Join the conversation on our Forum and connect with other people with CF. Read the transcript for this episode.

47 min

JAN 23

CForYourself: Exercise and CF

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 shares how exercise has helped him and his top tips for staying active. Lucy also chats to CF physio Ruth, who is based at the Leeds Adult CF Centre. Ruth talks about the importance of physio and offers her advice for people with CF when it comes to exercise. Being active is really important for people with CF, but make sure you have a chat with your CF team before starting a new exercise regimen. They can also give you advice about training. Read our full transcript. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.We’ve worked with exercise physiologist Dr Owen Tomlinson and physiotherapist Rachel McDowell to put together a marathon training guide for people with CF.Read our information on staying active with CF. Read our information on physio and CF. Find out more about the YOGA-CF study. Get fit and fundraise at the same time by joining Team CF. Choose from walks, runs, cycles and much more! Choose your event. You can follow Matt's running journey on his Instagram @mattstrangerunningcoaching. Follow the Leeds CF physio team on Instagram @cfphysioleeds.

48 min

12/12/2024

CForYourself: Navigating a new diagnosis

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 as a volunteer for our CF Connect peer support service for parents of children and young people with CF. Read the full transcript. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsApp.If your baby has just been diagnosed with CF, you might not know where to start. We've pulled together lots of information to help make things easier. Download our guide for families. Speak to a trained volunteer who also has a child with CF through our CF Connect peer support service. We recognise that for those with children who don't benefit from Kaftrio, the new diagnosis journey can feel very different. Please get in touch with our Helpline with any questions you might have.

48 min

11/14/2024

CForYourself: Pregnancy and CF

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 we will be funding a new research project examining the impact of pregnancy, childbirth, and breastfeeding for those with CF. Researchers will also work with the Trust to develop new guidance on women's health throughout their lives. This Strategic Research Centre, or SRC for short, will be led by Dr Imogen Felton and Professor Jane Davies of Royal Brompton Hospital and Imperial College in London. Our host, Lucy, is joined for a virtual tea and chat by Dr Imogen Felton to chat all about this topic, along with Obstetric Physician Dr Rebecca Scott, who works in the CF maternal health service at Chelsea and Westminster Hospital and the Brompton, and Laura Visick, who has CF and recently became a mum to a little boy called Lucas. Read the full transcript. For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email helpline@cysticfibrosis.org.uk, or message us on WhatsAppYou can find lots more information in the Trust’s Starting a Family booklet. Find out more about how CF affects the reproductive system and fertility of men and women, and the different fertility treatments available.Genetic testing is a complicated topic. If you have any questions please discuss it with your GP, or CF team if you have access to one. Our factsheet on carrier testing also goes into more detail.Home-Start UK and Cystic Fibrosis Trust are working together to support the growing number of people with cystic fibrosis becoming parents who find themselves balancing their extensive CF treatment burden with care for their newborn. The pilot is taking place across Glasgow.Find out more about the MATRIARCH SRC. Being told that you can’t have the family you wanted, for whatever reason, can be devastating. Your CF team may be able to provide emotional support or direct you to other sources of support. We also recognise that for those who don't benefit from Kaftrio, the journey to becoming a parent might not be straightforward. Get in touch with our Helpline with any questions.

52 min

CForYourself: A podcast from Cystic Fibrosis Trust

CForYourself: What I wish people knew about cystic fibrosis

CForYourself: Clinical Trials Day and CF research

CForYourself: Self employment and the Helen Barrett Bright Idea Awards

CForYourself: Employment and cystic fibrosis

CForYourself: 60th anniversary special with Chief Executive David Ramsden

CForYourself: Exercise and CF

CForYourself: Navigating a new diagnosis

CForYourself: Pregnancy and CF

About

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CForYourself: A podcast from Cystic Fibrosis Trust

Episodes

CForYourself: What I wish people knew about cystic fibrosis

CForYourself: Clinical Trials Day and CF research

CForYourself: Self employment and the Helen Barrett Bright Idea Awards

CForYourself: Employment and cystic fibrosis

CForYourself: 60th anniversary special with Chief Executive David Ramsden

CForYourself: Exercise and CF

CForYourself: Navigating a new diagnosis

CForYourself: Pregnancy and CF

About

Information

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