Meet YAG!
We are a group of young people aged 14–25 who are living with CF or have a close family connection to someone who is. We are all part of the Trust's Youth Advisory Group (YAG), which is a way for young people to influence work at the Trust and make sure that our voice is heard loud and clear. We chat, share and laugh our way through our online meetings, and get to know amazing people along the way. Here, five YAG members share why we got involved and chat pets, superpowers and weird food!
Tilly
Why did you join YAG? I joined YAG because my mum got an email saying that they would really love for me to join and because I’ve been involved in previous Trust projects, they thought I’d love to be a part of YAG. This was 100% correct!
What do you like doing in your spare time? In my spare time I absolutely love to read! So much so that I made an Instagram dedicated to books haha. I also love acting and watching musicals (hence the photo!).
Do you have any pets? I have an adorable cocker spaniel called Woody and a tortoise called Minnie.
If you could choose any superpower what would it be? Ooooh my superpower would have to be mind control (for good reasons though, of course!).
What is the weirdest thing you have ever eaten? I once ate pen ink. Safe to say I haven’t chewed the end of my pen since.
Shaan
Why did you join YAG? It's been well over five years since I joined so I can't exactly remember - but it was both to play a part in making the Trust's work with young people with CF better, and to some extent, to just get the opportunity to speak to other people with CF. We've led on so many projects at YAG, as well as steering many Trust-led projects towards capturing the needs of young people with CF and it's magical seeing the positive response from the CF community when something we've input into has a tangible impact on people with CF.
What do you like doing in your spare time? I am unfortunately a bit of a nerd (but don't worry, not everyone in YAG is!) so I might be watching a council meeting - or more recently, messing around with census data! I enjoy a bit of stand-up too - I'm a hardcore listener of the Off Menu podcast with James Acaster and Ed Gamble! In addition to the more political podcasts I like, usually Reasons to be Cheerful with Ed Miliband!
Do you have any pets? Unfortunately not but I'm a massive cat lover. If you do join YAG and have a cat, please do send me your cat pics!
If you could choose any superpower what would it be? Mind control, so that I can get politicians to build more houses and transport connections.
What’s the weirdest food you’ve ever eaten? Sugary scrambled eggs! The texture was horrific but otherwise it wasn't that bad, tbf?
Julia
Why did you join YAG? My son has CF and I want to meet other people with CF to find out their struggles in daily life so I can support my son as much as I can. I joined to make his life as easy as possible.
What do you like doing in your spare time? Cooking, learning anatomy and physiology (I'm a physio lol)
Do you have any pets? No :(
If you could choose any superpower what would it be? Read in people's minds so I know if they lying or not
What’s the weirdest food you’ve ever eaten? Snails
Chawan
Why did you join YAG? I joined YAG because I became more aware of CF when a family member was diagnosed. I organised a fundraiser at my school to raise money for the CF Trust and the person from the Trust that helped me thought I’d like YAG!
Tehya
Why did you join YAG? I joined YAG so that I can talk to other people with cystic fibrosis and I instantly loved it!
Do you have any pets? I have 2 dogs called Kayce and Lyla, a cat called Luna and my own kitten called Tails (who YAG absolutely love!)
If you could have any superpower what would it be? It would be to be able to control time, I think that would be so cool!
What is the weirdest food you have ever eaten? I ate chips and ice-cream together and it was actually quite nice!
Rosie
Why did you join YAG? I really enjoyed going to the online events for children that are put on by Cystic Fibrosis Trust. When I got older I wanted to keep doing things with the Trust!
What do you do in your spare time? I love playing music and playing the guitar.
Do you have any pets? I have a tortoise called Dandelion. For 6 months of the year he hibernates for the winter! He nudges my foot for attention and loves shell scratches.
If you could choose any superpower what would it be? I’d love to be able to shape shift and become any animal.
What’s the weirdest thing you’ve ever eaten? I ate a Spongebob Squarepants ice cream once and it stained my skin yellow!
And what’s that you’re holding? This is YAGGY the YAG mascot! My friend crocheted it for us!
Ella
Why did you join YAG? I joined YAG because I wanted the opportunity to meet other young people with CF. Also, I was interested to help out the trust with all of their amazing projects within the CF community.
Do you have any pets? I have two very lovely (but also very cheeky) terriers. They love to chase after squirrels but have so far never caught one.
What do you like doing in your spare time? In my spare time, I love to play Minecraft with my friends, watch movies and read. Some of my favourite authors are Agatha Christie and Stephen Fry. Also I love to dance and play cricket.
If you could choose any superpower what would it be? I think I’d like to be able to fly - that way I’d never get stuck in traffic.
What’s the weirdest thing you’ve ever eaten? Oysters. Well, one oyster. They’re really weird.
Building Brighter Futures
Find out more about our programme of talks, Q&As and workshops for 10-18 year olds with cystic fibrosis.
Festival fever
Download our festival planning information guide – 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.