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Cystic Fibrosis Trust

@cftrustuk

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UK-wide charity making a daily difference to people with #cysticfibrosis.
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Aaaand we're back! 👋🏻
Our helpline and social media has re-opened today, Friday 2 January, and are available to chat about any of your questions or queries.

If you have contacted us over the festive period we will get back to you as soon as possible.

Monday–Friday, 10am–4pm.
☎️ 0300 373 1000
✉️ helpline@cysticfibrosis.org.uk
📱 WhatsApp on 07361 582053 by @cftrustuk

Starting primary school or moving up to secondary school can feel like a big step, and CF can bring extra things to think about.

This summer, we held two CF Live education sessions to share tops tips for starting or returning to school:

🟡 In our primary school session, hear from parents and CF professionals who have already navigated or are navigating primary school to help you feel more confident about your child starting school.

🟡 In our secondary school session, parents, young people and professionals shared their real-life experiences and helpful advice so your young person can get the most out of their time at school.

Visit our YouTube channel to watch the recordings!

#cysticfibrosis #cftrust by @cftrustuk

Autumn and winter can be a challenging time, especially for people with cystic fibrosis and their families.

The colder months can bring health risks and added financial stress, but with good preparation it’s possible to ease some of those worries and reduce risks to health.

We understand how tough it can be, so we’ve put together helpful tips to protect your health, manage some of the additional financial stressors of the season, and stay on top of important vaccinations.

➡️ Comment 'LINK' and we will send you the webpage to your DMs.

#cysticfibrosis #cftrust #winterhealth #wintertips by @cftrustuk

🚴 London to Brighton Cycle 2027 is now open!

Join Team CF in September 2027 and take on an unforgettable 55-mile challenge.

The iconic route will take you past Buckingham Palace and along scenic country lanes, have you conquering the Ditchling Beacon and crossing the finish line on Brighton seafront, all while helping us lift the limits of cystic fibrosis.

Sign up now and start your journey today

➡️ Comment CYCLE to find out more about this incredible challenge 🚴🏼 by @cftrustuk

Looking for a festive challenge? 🎅

Get into the Christmas spirit with a family-friendly Santa Run! Whether you’re tackling a new distance, chasing a personal best or making memories with loved ones, it’s a fun way to fundraise for Cystic Fibrosis Trust.

Sign up and we’ll send you a special Cystic Fibrosis Trust Santa hat to wear proudly on the day. 💛

Join a Santa Run today!

➡️ Comment SANTA to find out more about taking part in a Santa Run 🎅🏼 by @cftrustuk

Content warning: this post touches on the topics of loss and grief.

There are some moments when we can feel the absence of someone we love even more deeply. A celebration, a special date or simply the changing seasons can bring treasured memories back to us and make us wish they could be there to share the moment.

For Tesni, the eve of her wedding was one of those moments. She wanted to include her brother, Bryn, in such a special time, so she shared a heartfelt message and made a gift in his memory.

Since then, Tesni has created a lasting memory page for Bryn, bringing together treasured photos and thoughts, alongside more than £8,000 previously raised in his memory.

We are so thankful to Tesni and to everyone who chooses to remember someone special. 💛

Those who have died will always be part of our cystic fibrosis community. If you are grieving someone you love, we want you to know that you remain an important part of our community. We are honoured to remember them with you.

If there is someone you are missing, you can leave a thought, share a picture or make an in-memory donation on our Dedication Wall.

➡️ Comment "MUCH LOVED" and we will send you a DM with the webpage.

Or, if you would like to talk about the different ways you can remember someone special, please contact Susan, our In Memory Officer, at susan.jackson@cysticfibrosis.org.uk

#InMemory #cysticfibrosis @MuchLovedUK by @cftrustuk

Carols by Candlelight is almost here and we’re thrilled that this year’s readers include Jenny Agutter, David Haig, Luke Martineau and, joining us for the first time, Laurence Rickard, best known for Ghosts and Horrible Histories.

We’ll also hear from Rula, whose daughter Layla has cystic fibrosis, as she shares their family’s story.

There’s still time to get your ticket for this magical festive evening on 15 December.

Get your tickets now!

➡️ Comment “Carols” and we’ll DM you the webpage ✨ by @cftrustuk

A study looking at new inhaled therapy, ETD001, has shared promising results in people not taking CFTR modulators.

The new therapy is a type of ENaC blocker, designed to block channels that move salt into lung cells. This could help keep mucus in the airways moist and easier to clear.

This is the first of this type of therapy to show clinically meaningful improvements in lung function.

The next planned study will look at how effective this therapy is when taken in combination with modulators.

➡️ Click the 'news and blogs' link in our bio to find out more.

#cysticfibrosis #cftrust #researchwednesday #clinicaltrials by @cftrustuk

This year marks 10 years of our Youth Advisory Group (YAG), who have achieved so much for young people with CF over the past decade.

In the latest issue of CF Life, we chatted to Nicola, who has been involved in YAG since the first meeting in 2016 and is now a co-facilitator, and Lizzie, who joined in August 2025.

A big thank you to all of our YAG members, past and present, who have made such a difference for the CF community. ⭐

➡️ Click on the link in our bio to read the article and find out more about YAG.

#cysticfibrosis #cfyouth #cftrust by @cftrustuk

We’re thrilled to invite your child to our Disney-inspired Zoom party!

Hosted by the Snow Queen, join us for an action-packed adventure! Enjoy games, dancing, quizzes, scavenger hunts and more. Dress up as your favourite princess or superhero and get ready for an unforgettable evening of fun and magic!

This event will be led by Abi, professional party princess and young adult with cystic fibrosis.

🔵 For children aged 6–10 with CF or who have a sibling or parent with CF. Children are welcome to call in from hospital.

🔵 Dress code: come dressed as your favourite princess, superhero, fictional character, or whatever party outfit you feel your best self in!

🗓️ Monday 9 November from 5–6.30pm.

Please email cfyouth@cysticfibrosis.org.uk to sign up.

You can find Abi on Instagram at @fairytalesandtiarasuk 🌟

#cysticfibrosis #zoomparty #fancydress by @cftrustuk

✨ Fundraising Friday ✨

Today we’re celebrating Liam Kearney, Managing Director of @Powerdayplc, who completed the incredible 170km Ring of Kerry Charity Cycle in July and raised an amazing £1,123! 🫶🚴🏼

Powerday has supported Cystic Fibrosis Trust for several years in recognition of their colleague Charlotte Bones, who lives with cystic fibrosis.

A huge thank you to Liam for taking on this epic challenge and to everyone who supported him. Your generosity will help us continue supporting people with cystic fibrosis and their families. 👏

#cysticfibrosis #cftrust #CharityCycle #CharityChallenge by @cftrustuk

Today we launch our new five-year strategy, reflecting the views, hopes and ambitions of people affected by CF.

A big thank you to everyone in the community who shared their experiences with us and helped shape this important work.

Our latest Registry report, released today, serves as a reminder of how hard life with CF still is, and the many challenges to overcome. As we look ahead to 2031, our new strategy sets out what we believe needs to change – and how we’ll work towards making that change happen.

Our goals are:

🟡 Living with CF: tackling the daily challenges of living with CF

🟡 Future challenges of a changing CF: responding to emerging and future health challenges in CF

🟡 No one left behind: addressing health and socioeconomic inequities

🟡 Stronger together: uniting everyone affected by CF for change

As we embark on this new strategy, we’re delighted to announce that Michelle Shore, who has CF, will be our new Chair of Trustees. Congratulations Michelle!

You can read the strategy in full, plus more about Michelle’s appointment, on our website.

➡️ Comment "LINK" and we will send the webpage to your DMs.

#cysticfibrosis #cftrust by @cftrustuk