Meet YAG! The amazing young people making a difference to those with CF

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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, laugh and cough our way through our monthly 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!


Name: Cicely 

Why did you join YAG? 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. It made so much sense!

What do you like doing in your spare time? I spend my time doing embroidery (a lockdown hobby that I have continued). I also enjoy exploring museums and spending time with friends and family.

Do you have any pets? I have two! I have a cat named Rupert and a dog named Poppet.

If you could choose any superpower what would it be? Currently I would love super speed, walking up and down the hills to university takes a lot of time (and lung power!).

Favourite weather phenomenon? Rainbows! They are just so cool.


Name: 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.


Name: 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 and her son

Name: 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


Name: 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!

You can find out more about YAG and how to join here. 

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