Youth Advisory Group
We are a group of young people aged 14-25 who are living with CF, or have brothers, sisters or parents living with cystic fibrosis. On paper, YAG is a way for young people to influence work at the Trust and make sure that the voices of young people with CF are heard. In practice, it is that and loads more! We chat, share, laugh and cough our way through our monthly online meetings, and get to know amazing people along the way.
As a member of YAG, you will:
- Influence work at the Trust
- Make sure the voice of young people with CF are heard
- Lead your own projects
- Meeting amazing people
- Make a change!
We're always looking for new people to join us, so if you're 14-25 years old and would like to get involved, drop us an email at email@example.com.
I joined YAG to not only help other people with CF, but also to get to know other young people in the community and to have a support network that understood CF in its entirety. I loved the idea that it was a group of people with CF or a connection to CF making content and projects for those with the condition - Cicely, YAG member
What have YAG been up to?
When I grow up...
What did you want to be when you were younger? Doctor? Footballer? Vet? Firefighter? Dancer? The hopes, dreams and aspirations of the CF community are as big and far-reaching as everyone else’s. That’s why YAG have launched a new careers project, When I grow up..., to show young people with CF the possibilities that are out there when it comes to planning a future career. From writers to stunt performers, as part of the project, we heard from people with CF in a range of careers about their working life, juggling CF with their day job, and the advice they’d give their younger self.
Check out all the videos on our youth Instagram feed @cftrustyouth.
Find out more
Our main aim of the project is to inspire. Personally, I really want to know how, in the future, I can do well in my career while also maintaining my health. I hope the main takeaway is that CF should not limit your life. You are able to do anything and choose any career you want.
In Autumn 2021, YAG wanted to show young people with CF that exercise does not always have to be serious and repetitive - sometimes you can just have fun! YAG came up with an A-Z of silly exercises to get everybody moving, and hopefully laughing a bit too!
Find YAG's full list of AlphabExercises on our youth Instagram page @cftrustyouth.
Find out more
We thought of silly exercises for every letter of the alphabet and it was just a fun way to get people motivated. It can get boring doing the same activities day after day, so it was just a fun, light-hearted thing to do when people had been stuck at home during lockdown and maybe feeling a bit low.
Kaftrio Youth Survey
When Kaftrio became available in the UK to people with CF who were eligible, YAG discussed how social media had been full of mixed emotions. Everyone had different reactions and experiences in relation to the Kaftrio news, and YAG thought it was extremely important to recognise that everyone’s individual feelings were valid.
In response, YAG launched a survey where young people with CF could share their opinions, thoughts, and feelings — whatever they were! YAG published the results on the Trust’s youth Instagram channel so that young people with CF’s voices were heard and we could show what a complex and important issue this is for everyone.Find out more about what the survey found
YAG’s project #MorethanCF (on the Trust’s youth Instagram page @cftrustyouth) was all about bringing young people in the CF community together, to celebrate their incredible skills and talents and show everyone that people with CF are so much more than their condition. We had such a great response and celebrated so many wonderful achievements from some amazingly talented young people!Read more
Benji's Cystic Fibrosis Food Friend
YAG member Nicola created 'Benji's Cystic Fibrosis Food Friend' as part of her master's degree in publishing. Nicola says, "As a child, I wasn’t particularly good at remembering to take my enzymes and I didn’t truly appreciate exactly why I had to take tablets every single time I ate something.
"I thought this project would be a great way to explain to children with cystic fibrosis about the dietary requirements of the illness."
'Benji’s Cystic Fibrosis Food Friend' is designed as if it were made by eight-year-old Benji and aims to educate children with CF about the reasons they must take their enzymes but in a simple, fun and illustrative way. Nicola says, "I hope Benji’s story can help children with CF and their parents start conversations about such an important part of living with the condition."
Benji's Cystic Fibrosis Food Friend was reviewed by a CF dietitian.Download the book
Building Brighter Futures
Find out more about our programme of talks, Q&As and workshops for 10-18 year olds with cystic fibrosis.
Download our festival planning information PDF - it's full of loads of great tips for making sure you have the best time possible, a useful packing checklist and a medical information template.
My friend has CF
Check out our 'My friend has CF' page, where young people can find out more about the condition and how they can support their friends or people in their class who might have it.