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?
Lizzie
Why did you join YAG? I joined because I was keen to meet other young people with CF and get involved with work at the trust
Do you have any pets? I used to have Guinea pigs and a cockatiel but none at the moment
If you could have any superpower what would it be? I would want to be able to speak every language so I could talk to anyone
What do you do in my spare time? I am involved in lots of music and I love singing in choirs and playing viola in orchestras. I’m also the captain of sailing at school which is super fun! I used to play rugby but now I support my friends from the sidelines.
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.
Michal
Why did you join YAG? I joined YAG because I want to help others like my brother and also connect with the CF community to try and make a positive difference.
Do you have any pets? I’ve got three cats – Poppy, Biscuit, and Honey. They’re super sweet and full of energy… which can be a bit of a nightmare when I’m trying to sleep!
What do you like doing in your spare time? I don’t get loads of spare time outside of the school, because I play water polo, I’m an RAF cadet, and I’m also part of the West Northamptonshire Youth Council. But when I do get time, I love gaming with my friends and playing Warhammer :)
If you could choose any superpower what would it be? If I could have any skill, I’d want to be able to reason with anyone and convince them to see things my way.
What’s the weirdest thing you’ve ever eaten? The weirdest thing I’ve eaten has to be eel with banana on holiday in Madeira – sounds strange but it was actually really tasty!
Cairenn
Why did you join YAG? I joined YAG to share my experiences, make some friends and help young kids, and medical workers understand the condition of CF.
Do you have any pets? I have 5 dogs and 2 chickens and I love them so much.
What do you like doing in your spare time? I'm currently working on a book and I love doing it, it's very thrilling!
If you could choose any superpower what would it be? I would definitely choose teleportation so I could explore the world without paying for flights 😋
What’s the weirdest thing you’ve ever eaten? The weirdest thing I ever ate has to be a sea snails (they were actually quite nice tho).
Joseph
Why did you join YAG? I had opportunities to join YAG before, but I hadn't realised the chance before as I do now. I have the chance to communicate to others with CF and realise that other people can relate to me. I now have the chance to help and support others in situations similar to me.
Do you have any pets? I have a cockapoo called Toto, who is a lovely dog and totally doesn't chew everything we own! Had cats before but sadly no more.
What do you like doing in your spare time? I enjoy going on runs because it gives me a great feeling when I improve on my recent times. I also love listening to music, specifically band and indie music because I love music with passionate lyrics or backing. Defo a massive food lover, give me a chicken burger or banana bread to win me over.
If you could choose any superpower what would it be? Definitely teleportation, as I have always been wanted to be somewhere or visit someone and can't because of the distance.
What’s the weirdest thing you’ve ever eaten? I'm not much of a weird eater, I enjoy what I like... But maybe snails I had on a cruise, they tasted like some chewy old hair gel.
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.