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.
"What I love about YAG is that we all get to use our own talents and interests to develop things semi-independently, as well as doing amazing group. I can make a difference to the lives of people living with with cystic fibrosis. We make sure the voices of young people with CF are heard and make lasting friendships along the way." - Jade
What have YAG been up to?
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!
You can read more about the project in our latest edition of CF Life magazine and find YAG's full list of AlphabExercises on our youth Instagram page @cftrustyouth.
Kaftrio Youth Survey
When Kaftrio became available to eligible UK patients in 2020, 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.
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!
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.
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.