We want to hear your ideas
On paper, the Youth Advisory Group (YAG) is a way for young people to influence work at the Trust and ensure that the voices of young people with CF are heard. In practice, it’s that and loads more. We discuss, share, laugh and cough our way through our monthly online hangouts and drink more tea than is probably entirely necessary. It’s a great way to meet amazing people and make a change.
YAG members have had social media training, vlogged at Bestival, worked on an award-winning CF app and loads more. We’re always looking for new people to join in, so if you’re 14-25 and would like to get involved or give it a go shoot us an email at cfyouth@cysticfibrosis.org.uk or stalk us on Twitter at @CFTrustYouth.
We are a group of young people aged 14-25 who are living with CF or close to someone living with CF. We are joined at our monthly meetings by Holly-Rae Smith, the Trust’s Youth Empowerment Officer. Occasionally other professionals will join us as well, for training, to let us know about upcoming projects or just to say hello. We are all passionate about the wellbeing of children and young people living with cystic fibrosis.
Meet YAG!
Stay in touch! There are lots of other things that you can be involved with:
- Regular games nights on X Box One and PS4.
- Opportunities to share your story with us and help our information resources.
- Volunteering opportunities - we've had volunteers with CF working from home to boost their CVs, UCAS or Duke of Edinburgh Award.
- Chat to us on Twitter @CFTrustYouth.
If you have any comments, ideas or questions, please feel free to contact cfyouth@cysticfibrosis.org.uk.
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.
"As proper understanding came with age, 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 an easy to understand, 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