CForYourself: CF Week special on research and CF

06/15/23 • 36 min

CForYourself: A podcast from Cystic Fibrosis Trust

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 Fibrosis Trust.

It's thanks to our incredible supporters that we can continue to be at the cutting edge of CF research. Making breakthroughs and discoveries that change lives for the better. Now and in the future. But we know this is just the start. Incredible progress has been made, but there is still a long way to go until everyone with CF can truly live a life unlimited.

Donate today and help us unite for a life unlimited.

Read the full episode transcript on our website.

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 [email protected].
Find lots more information about the research we fund at the Trust.
Visit our Clinical Trials Hub to find out more about clinical trials and how you can get involved. You can also take a look at our very own Trials Tracker: a CF clinical trials database to help you find suitable clinical trial opportunities.
We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
Read our factsheet on Kaftrio - complex and individual experiences. It contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

The podcast is also available on Spotify and Apple Podcasts.

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 Fibrosis Trust.

Donate today and help us unite for a life unlimited.

Read the full episode transcript on our website.

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 [email protected].
Find lots more information about the research we fund at the Trust.
Visit our Clinical Trials Hub to find out more about clinical trials and how you can get involved. You can also take a look at our very own Trials Tracker: a CF clinical trials database to help you find suitable clinical trial opportunities.
We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.
Read our factsheet on Kaftrio - complex and individual experiences. It contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of Kaftrio.

The podcast is also available on Spotify and Apple Podcasts.

Previous Episode

CForYourself: FeBrewary special

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.

To get in the spirit, Lucy is having a brew and catch up with the lovely Charlotte Bones. Charlotte is a supporter of the Trust and has raised vital funds over the years. Charlotte recently spoke movingly at our Carols by Candlelight service about her life with CF and how doctors advised her that, at age 27, she should prepare for the worst. She also talked about her experiences of the COVID-19 pandemic and a period of poor health, which left her in continuous pain.

“CF has never, and will never, get the better of me," Charlotte told the audience, and since starting Kaftrio, Charlotte's health has improved greatly.
In this episode, Lucy and Charlotte chat about a range of topics, including mental health, cross infection and Kaftrio. We also hear from Nicola, who works in our community fundraising team, about how listeners can get involved in FeBrewary 2023.
This episode deals with some issues that listeners may find upsetting, including life expectancy, mental health and Kaftrio. If you have questions about any of the topics raised in this episode, we're here for you. You can call our Helpline on 0300 373 1000, or email [email protected].The views and experiences shared in this episode are individual to Charlotte and Lucy and may not reflect the experiences of the CF community.

Growing older with CF - Find out more about growing older with cystic fibrosis, and access relevant support and information.
Work and CF - Information on work and CF, including details of organisations that can provide support with discrimination.
CF Forum - Join the conversation on our Forum and connect with other people with CF.
Kaftrio - complex and individual experiences - This factsheet contains information for people with CF and their families, whether they are taking Kaftrio or not. It includes information about dealing with mixed emotions, managing changes, the reactions of family and friends, and other possible impacts of the Kaftrio.
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.
Research that’s underway that could help those who don’t benefit from CFTR modulators
FeBrewary - Make your cuppa count this FeBrewary. Host a tea party and raise vital funds, so we can continue to be there for everyone with CF.

Next Episode

CForYourself: Living with an invisible condition

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 of cystic fibrosis. In the very first episode of season two, our host, Lucy sits down with Kieron to hear more about his involvement in the campaign, his life with CF and the importance of raising awareness.

(In this episode, Kieron is speaking from a personal capacity - all views are his own and not necessarily that of Cystic Fibrosis Trust.)

We also hear from Sean Chapman, Head of Marketing at the Trust to give us the lowdown on the campaign and the response from the CF community.

Read the full episode 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 [email protected], or message us on WhatsApp
When it comes to diet and nutrition, everyone with CF is different. You should always seek individual advice from your CF dietitian.
For general information about a range of issues relating to diet, nutrition and CF, we have a series of leaflets that have been written by CF dietitians.
Check out our ‘Work Forwards’ programme of employment support for more information about disclosure of CF at work and how, when and why you should make an employer aware that you have CF. The decision to tell your employer about your CF is a personal choice for you to make, but if you don’t tell them, it could affect your rights.
Find lots more information on work and CF, including details of organisations that can provide support with discrimination.
Speak out and share your CF truth. You can download our social media graphics and help others understand what everyday life is like for people with CF. Remember to tag us @cftrustuk and use the hashtag #CFTruths to join the conversation.
Discover our new programme of employment support.

The podcast is also available on Spotify and Apple Podcasts.

CForYourself: A podcast from Cystic Fibrosis Trust - CForYourself: CF Week special on research and CF

Transcript

Season 1, episode 8: CF Week: Research and CF

Lucy (host): Hello and welcome to CForYourself, with me, your host, Lucy Baxter. The podcast brought to you by UK charity, Cystic Fibrosis Trust. I’m one of over 10,800 people in the UK living with cystic fibrosis.

CF is a genetic condition that causes a build-up of sticky mucus in the lungs. So that means I experience a range of different symptoms like breathlessness and malabsorption. I was diagnos