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Cystic Fibrosis Trust

Meet YAG!

Meet the members of the Cystic Fibrosis Trust's Youth Advisory Group (YAG).

Our YAG members took some time out of their busy schedules to answer some questions about who they are and why they are passionate about being part of our youth advisory group.

You can find out more about YAG and get involved or if you have any questions contact the Trust's Youth Empowerment Officer at

Name: Beth
Location: Bristol
Occupation: Currently unemployed... but maybe I should say gap year traveller!?
Hobbies: Dog walking, reading, watching TV shows repeatedly, blogging, travelling, shopping (mostly for food), playing Crash Bandicoot on PS1.
Favourite book/film/band: Harry Potter and the Half Blood Prince or the Deathly Hallows, or any Liane Moriarty book / Trainwreck with Amy Schumer, 21 Jump Street (or just anything with Channing Tatum in, am I right?) / 5 Seconds of Summer, PVRIS, Busted.
​In the next 12 months I would like to: Have found a job that is related to my degree and have more travelling planned!
Something that I am passionate about to do with CF: Raising awareness of it and how it affects all parts of the body (not just the lungs) - but showing that people with CF fight it, rather than suffer from it. Rather than pity I’d like people think "wow they handle that well" - because we do!
The weirdest things I've ever eaten: A McDonald’s hot chicken wrap dipped in McFlurry…? Drunk me found the wrap too spicy and thought the ice-cream would stop my mouth feeling like it was on fire.
Secret talent: I’ve recently found out that I can remember sequences of numbers for an unnecessarily long time and for no good reason at all.

Name: Cicely
Occupation: At the end of her first year of university.
Hobbies: Going to the gym, swimming, watching Disney films, going to concerts and shows.
Favourite book/film/band: The Girl on the Train or The Shock of the Fall / Lilo and Stitch / Panic! At The Disco.
​In the next 12 months I would like to: Be at university learning how to be independent and learn how to cook some great meals on a student budget.
Something that I am passionate about to do with CF: I am most passionate about raising awareness of CF, I believe that awareness plays a crucial role when it comes down to understanding CF and raising lots of money for the Trust! To define CF in its entirety and stop that age-old question: "Is that like asthma then?"
The weirdest things I've ever eaten: Rabbit, but that was when I was very young and my mum hid it in my baby food so I’m not sure it really counts?!
Secret talent: Can sleeping for long periods of time be a secret talent? Because if it can be… it’s mine!

Name: Dan
Location: Preston
Occupation: Care Coordinator
Hobbies: Gym, running, eating, PS4, travelling, photography.
Favourite film/band: Deadpool, basically anything Marvel or DC-related / Royal Blood, Muse, Chvrches, Enter Shikari.
In the next 12 months I would like to: Become a driving instructor, live independently, visit Hockenheim, Germany to watch the F1 Grand Prix race and perhaps work towards the level 1 football coaching badge.
Something that I am passionate about to do with CF: I want to get back into training for running 10K events during 2018 and hopefully start fundraising for the Trust to raise awareness about different aspects of CF.
The weirdest thing I've ever eaten: Eating liver is probably the weirdest and possibly the most disgusting thing I've ever eaten.
Random fact about me: This is an unusual trait for a man, but I'm good at multi-tasking.

Name: Domenica (Dommie/Dom)
Location: Cambridge
Occupation: Starting university in September.
Hobbies: Reading, procrastinating, binge-watching Netflix series, fake tanning, eating too much and stalking the Huda Beauty Instagram page.
Favourite book/film/band: Gone Girl / any Harry Potter or Richard Curtis film / Lana Del Rey and The Weeknd.
​In the next 12 months I would like to: ​Learn how to drive, pass my AS Levels and become more actively involved in the CF community.
Something that I am passionate about to do with CF: Supporting young people dealing with mental health, removing the stigma and raising well-needed awareness in mainstream media.
The weirdest things I've ever eaten: Scrap pieces of chocolate pavlova I salvaged after dropping it on the garden decking - it was so worth it.
Secret talent: I can eat all the food. All of it.

Name: Jade
Location: Southampton (term-time), High Wycombe (holidays)
Occupation: MBiomedSci Biomedical Sciences student
Hobbies: Keeping fit, attending my favourite artists' music gigs, keeping up to date with current topics in the science world and making delicious recipes on a student budget!
Favourite book/band: The Tales of the Otori series / Rae Morris, Lianne la Havas and D.I.D.
In the next 12 months I would like to: Be studying my Masters, learning to rollerblade (why not?) and leading a group within YAG and developing exciting projects.
Something that I am passionate about to do with CF: ​Making the science behind discoveries and the disease more accessible so young people can be empowered by knowledge and not intimidated by it.
The weirdest thing I've ever eaten: Raw octopus! Or a raw egg...
Secret talent: I can hold my breath for over two minutes!

Name: Liv
Location: Bristol/Cotswolds
Occupation: Student Dental Nurse (hopefully only a student until July... if I pass my exams!)
Hobbies: Sewing, baking, making things, tap dancing, watching cute dog videos online and sending them to my mum, cooking and trying my hand at whatever DIY my parents are doing!
Favourite book/film/band: When Breath Becomes Air / The Holiday, Music and Lyrics, pretty much any chick flick! / Misplaced Childhood by Marillon is probably my favourite album.
In the next 12 months I would like to: Do some more talks to different people about CF/fundraising and qualify as a Dental Nurse (more of a three-monthly goal!)
Something that I am passionate about to do with CF: Awareness - I would love people to know what I'm saying when I tell them I have cystic fibrosis. Fundraising - kind of goes hand in hand with awareness. I used to do a bit of fundraising for the day unit and my paediatric centre hospital in Basingstoke and I really enjoyed it, spreads the word about what CF is too!
The weirdest things I've ever eaten: I think it’s probably snails? Or frogs legs (I was in France in case you hadn’t guessed).
Secret talent: Balloon modelling (I can make a jumping mouse and numerous types of headwear).

Name: Nicole
Location: New Jersey
Occupation: Public Relations/Fundraising
Hobbies: Children's Theater, Writing, Vlogging
Favourite book/film/band: Hunger Games or Junie B. Jones / anything Adam Sandler or Forrest Gump / Stephen Sondheim is kind of a band.
In the next 12 months I would like to: Boost my FEV1 to 55; post more vlogs on twitter! @cystic4real
Something that I am passionate about to do with CF: Humor related to mental health, medicine compliance
The weirdest thing I've ever eaten: Do hotdogs in pasta count as weird?
Random fact about me: I have an antique Shirley Temple doll collection

Name: Niki
Location: Lancaster
Occupation: English Literature student at university.
Hobbies: Reading, fiction writing (occasionally having a shot at National Novel Writing Month), contemporary dance, binge watching TV shows (aka Dance Moms), online fashion writing/blogging.
Favourite book/film/band: Harry Potter or Emma by Jane Austen / any Disney film / The 1975, The Chainsmokers, The Script.
​In the next 12 months I would like to: ​Graduate from university and begin a post-graduate degree in publishing.
Something that I am passionate about to do with CF: Increasing awareness about CF and dispelling the myth that it’s just a lung disease. Showing that CF doesn’t have to stop you achieving anything you want to.
The weirdest things I've ever eaten: Kangaroo, or a Yorkshire pudding filled with a melted Creme Egg.
Secret talent: As you can tell from the previous answer, I love Creme Eggs... my record is eating 17 in an hour (yes, that was a lot of Creon!)

Name: Paris
Location: Birmingham
Occupation: Volunteer Unit Manager, Youth Leader, First Aider and Peer Educator for St John Ambulance, Team Leader for World Skills UK.
Hobbies: Volunteering for St John Ambulance, watching Disney movies and musicals.
Favourite book/film/band: Blood Sweat & Tea by Tom Reynolds / Alice in Wonderland / Greenday.
​In the next 12 months I would like to: Learn to drive and apply to be a Student Paramedic with the West Midlands Ambulance Service, become an Advanced First Aider for St John Ambulance.
Something that I am passionate about to do with CF: Raising awareness of CF and raising money for the Cystic Fibrosis Trust, the mental health of young people with CF going through secondary school with CF and exams.
The weirdest things I've ever eaten: Marshmallows dipped in chip shop curry sauce (strange I know but rather nice!)
Secret talent: I can balance a spoon on my nose, does that count?

Name: Shaan
Location: East London
Occupation: Just your average secondary school student...
Hobbies: Playing a bit of cricket, doing a bit of blogging, or spending too many hours of the day reading the Guardian online.
Favourite book/film: Wonder/Geostorm 
In the next 12 months I would like to: Probably just keep on going in everything that I want to do.
Something that I am passionate about to do with CF:
I want more people to realise that CF is a disease that shouldn't hold them back, and even though cystic fibrosis might stop us from doing some things, we should carry on being who we are, not letting CF stop us.
The weirdest thing I've ever eaten:
Boiled chicken (nothing exciting)
Random fact about me:
I once had to meet Theresa May

Name: Siobhan
Location: Bristol
Occupation: College student, Trust ambassador, CF campaigner on YouTube/Facebook.
Hobbies: Reading, YouTube, swimming
Favourite book/film/band: The BFG / Beauty and the Beast / The Clash
In the next 12 months I would like to: Get experience in journalism and be involved in more charity work. Write more articles for my local newspaper.
​Something that I am passionate about to do with CF: Mental health - more support and resources with advice and information. PIP - Personal Independence Payment for those going through the transition period.
The weirdest thing I've ever eaten: ​Snails from Lidl.
Random fact about me: ​I have a dog called Toby.

Name: Chloe
Location: South West London
Occupation: Personal assistant / studying part time at the Open University / NHS Youth Forum member
Hobbies: Reading, writing, arts and crafts, yoga
Favourite book/film/band: Anything by Haruki Murakami/ mean girls / Arctic monkeys
In the next 12 months I would like to: find some exercise that I enjoy that isn’t running (which I find really boring!) maybe boxing or parkour, I’d also like to travel to a few places in Europe, and start writing on my blog again.
​Something that I am passionate about to do with CF: Awareness, that it’s more than just a lung condition, and especially that people live with CF and we don’t all “suffer” from it- although it does come with its challenges for sure! Mental health and CF, and online peer support (overcoming the cross infection barrier).
The weirdest thing I've ever eaten: ​Chips and custard.
Random fact about me: ​I have a small obsession with stationery...

Become a driving instructor, live independently, visit Hockenheim, Germany to watch the F1 grand prix race and perhaps work towards the level 1 football coaching badge.

Young lives

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Youth Advisory Group

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