Cystic Fibrosis Trust

Today marks the end of #NationalCareersWeek and we're sharing our final career story of the week! ⭐ Josh is a Military Aircraft Simulations Engineer apprentice. This is Josh’s first job since leaving education and he really likes the variation of his role, as no two days are ever the same, and the people he works with, "We have a good team that don’t see anything as a limitation just a different way of working." His role involves a range of duties throughout the working day. He spends his first hour turning on 20 devices, from full motion simulators to desktop trainers. Then there is a break until flying starts for the day. During the flying program all maintenance is reactive, so during the program he works on smaller projects or paperwork. Once flying finishes, he needs to clean the equipment and do any maintenance that is required on the devices before he turns everything off. When it comes to managing work and CF, Josh says that his employer is very accommodating with hospital appointments. His advice for a strategy to manage work and health is not to let CF be a limitation, and he feels that #cysticfibrosis is only as limiting as he allows it to be. Fancy sharing your own job or career story? Whether you have CF yourself or care for someone who has CF, we’d love to hear from you! Get in touch with the team at workforwards@cysticfibrosis.org.uk.

Most 80th birthdays are unlikely to be celebrated 10,000 feet in the air, but that’s exactly how Shelagh, 79, will be marking hers, when she takes on a skydive this summer to raise money for Cystic Fibrosis Trust. “Doing something worthwhile and getting a thrill… it’s not something you get to do every day!" Shelagh told us. 💛 Shelagh has a very personal motivation behind the challenge: her friend Nick’s 6-year-old daughter Xanthe, who has CF. 🌟 We chatted to them both about fundraising for the Trust, the thrill of a skydive, and making sure everyone with CF can look forward to a brighter future. Click the link to read the article. ➡️ https://lnkd.in/eHJJP5Mh We'd like to say a huge thank you to Shelagh, Nick and all our amazing #TeamCF supporters. #CysticFibrosis #SkydivingAdventure #80thBirthday #ThrillSeeker

Our annual ‘Your Life and CF’ survey is back – and we want to hear from you! 📣 Whether you have CF yourself, or care for someone that does, please spare 10 minutes to tell us your story and experiences of living with cystic fibrosis. We can use the findings to inform our work, lobby the Government and campaign for long-lasting and meaningful change for everybody with CF. Have your voice heard. Complete the 2025 survey by Monday March 31 and please share with others in the community! Adult survey ➡️ https://lnkd.in/ethtwMY2 Youth survey ➡️ https://lnkd.in/eg6HBSTi

Last week we held a briefing for journalists at the Science Media Centre to round off our 60th anniversary year. 🔬 We shared how far research has brought us in improving the lives of people with CF in that time. 🫁 We also reflected on how much there is still to find out: from developing effective treatments for everyone and diagnosing and treating CF lung infections, to preventing and treating CF throughout the body and enabling people to live longer and healthier lives. Thank you to Professor Jane Davies and Dr Freddy Frost for speaking at the event and the team at Science Media Centre for having us. Read more about the briefing on our website. ➡️ https://ow.ly/57M950VaQee #CysticFibrosis #CysticFibrosisResearch #ResearchGoals #CFCommunity #CFTrust

As #NationalCareersWeek continues, we're sharing our second career story from the community this week! Struan is employed by a national 4 star hotel chain. He tells us that he likes having the opportunity to interact with so many different people from all over the world. Struan also enjoys sharing his knowledge of his city – as well as being able to create amazing drinks! In fact, summing his job up, Struan says, "I wouldn’t change it for the world, I absolutely love it!" Struan’s training route into his current role involved doing an apprenticeship qualification in hospitality leadership, which he says helped him develop his knowledge of the industry. He also cites less academic skills as being equally important in his job – particularly having good bar knowledge and being a sociable person! On managing work and living with CF, Struan says that the most difficult thing to balance is waking up at 4am to be able to take his medication and get his physio done and sometimes it can be stressful and overwhelming. His personal strategy for getting through the difficult times? "Be resilient, think of the rewarding moments when you really connect with a client and just remember, while you do a good job, people will remember you!"

In our latest blog, find out more about the vanzacaftor triple therapy - a new, once a day modulator therapy - and the latest on the NICE appraisal of this treatment. Click the link to find out more. ➡️ https://ow.ly/zebv50Va50X Please get in touch with our Helpline with any questions, Monday to Friday, 10am–4pm. ☎️ 0300 373 1000 or 020 3795 2184 💻 helpline@cysticfibrosis.org.uk 📲 WhatsApp on 07361 582053 #CysticFibrosis #CFCommunity #CFTRModulators #CFTrust

It's #NationalCareersWeek and our Work Forwards team will be sharing career stories from the CF community, as well as running two 'Career Flavours' sessions - scroll to the end of the caption to find out more about those! ✨ Today we're shining the spotlight on Evann who has been working as a retail assistant for around 12 years. She works part-time and really values the flexibility that her role gives her. Evann’s job involves everything from dealing with deliveries, working on the shop floor, to sometimes assisting store managers to cash up the store’s takings. She finds that having a zero hour contract works best for managing life with CF, but it can still be really challenging. "The most difficult part is how physical the job is when my CF isn't the best. I'm always on my feet and up and down stairs constantly so I definitely feel it when I'm not feeling my best." She also shared some practical advice about the type of working patterns that work well for her: "Start doing smaller shifts like 3 hour ones on a zero hour contract and just see how you go from there really. It does also help with keeping active, and finding managers that understand it all makes it so much easier." Although there are some difficult periods, Evann is quick to point out the positives "The best part about my job is the people I work with, my now best friend is someone I met there over 10 years ago." 💛 📣 Career Flavours Want to learn more about roles in the charitable sector or sports and fitness? Join us this week for our 'Career Flavours' session, and learn how people with CF built careers they love in these sectors. 🔵 7:00pm Tuesday 4 March – Charitable Sector 🔵 7:00pm Thursday 6 March – Sports & Fitness ➡️ https://ow.ly/J3GQ50V9sWj

It's #RareDiseaseDay and today we're introducing you to Emily's Entourage, a US-based nonprofit organisation that aims to speed-up lifesaving research and drug development for people with #cysticfibrosis who do not benefit from current modulators, founded by Emily Kramer-Golinkoff. ⭐ Emily's nonprofit began in her parents’ living room, but has gone on to award millions of dollars in research grants, launch a now clinical-stage CF gene therapy company, develop a global patient database and clinical trial matchmaking program to accelerate clinical trial recruitment for people unable to benefit from modulators, and lead worldwide efforts to drive high-impact research and drug development for those that do not benefit from existing CFTR modulators. 🔬 About our recent partnership, Emily told us, "At Emily’s Entourage, we believe that every single person with CF deserves a lifesaving breakthrough, no matter how rare their mutation. "That's why we’re thrilled to partner with Cystic Fibrosis Trust to expand access to our CF Clinical Trial Connect database to people that don’t benefit from existing CFTR modulators in the UK and around the world. The more people we have in the CTC, the faster we can enroll trials and develop new therapies so no one with CF is left behind, and everyone with CF has the chance to live healthy, long lives." You can find out more about how we work with Emily's Entourage in our latest blog on our website! ➡️ https://ow.ly/7j0N50V8iMI

✨ Fundraiser Friday ✨ This week we wanted to thank each and every one of you who took part in FeBrewary 2025. As actor and Cystic Fibrosis Trust supporter Vincent Franklin says in this video, every penny you raise helps Cystic Fibrosis Trust be there for everyone with #cysticfibrosis. From every cuppa brewed to every cake bake organised, the money raised will go a long way in supporting life-changing research. It's not too late to donate! Visit our website to make your cuppa count. ➡️ https://ow.ly/P4E750V8bgK Thank you everyone, and cheers to you ☕ #FundraiserFriday #CFTrust #CharityEvent # #MakeADifference

“I’ve never allowed my CF to stop me from taking on epic challenges and when the training gets tough, my biggest motivation will be the fact that I’m running for the Trust and raising funds for the CF community.” 🏃♂️ We chatted to Kieran, who has CF, and will be taking on the London Marathon to raise money for Cystic Fibrosis Trust! He told us about managing his CF, taking on the marathon, and his plans to host fundraising events throughout the year. We’d like to say a huge thank you to Kieran and all of our incredible #TeamCF runners 👏 👏 👏 ➡️ https://ow.ly/jCWx50V7vKZ #cysticfibrosis #londonmarathon #MarathonTraining #CFCommunity