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This week’s blog is an interview between Findacure and RARE Youth Revolution’s Daisy Marriott! Daisy works for RARE Revolution Magazine as a Communications Assistant and is the Youth Editor of RARE Youth Revolution.

Get to know more about Daisy and the RARE Youth Revolution below and get in touch with her to express your interest in joining their cause as a young rare disease advocate and ambassador!

What were you doing before you joined RARE Youth Revolution?

Before I was fortunate enough to secure my role at RARE Revolution Magazine as Communications Assistant and Youth Editor of RARE Youth Revolution, I was taking some much needed time to relax after three intense years of studying at university.

I graduated from Canterbury Christ Church University with a degree in Religion, Philosophy and Ethics in September 2019. I loved my time at university and I think most definitely the ethics side of the course helped me adapt to thinking in new ways and gave me a broad understanding of different opinions. So, once I had settled into my role at Rare Revolution Magazine, there then came the opportunity to help launch and co-ordinate the RARE Youth Revolution!

Why did you choose to join the RARE Youth Revolution team?

I was so excited to be asked to be involved so heavily in this project, as it is a subject that I feel passionately about on a personal level.

I feel that if I weren’t doing it directly as part of my role, then I would have definitely joined anyway as someone with a rare condition. My own journey with rare disease has not always been plain sailing and I have often felt isolated and alone at times, especially after my diagnosis in my late teens. I would have loved to have had the option of expressing how I felt then through a platform, such as the RARE Youth Revolution. I feel that it would have helped enormously and given me an extra support network that is so important to have at such a difficult time.

What do you want to achieve most at RARE Youth Revolution?

I would love to be able to look back in a year from now and see how the project has taken shape and how the people involved in the movement have really made it their own. It is all about expression and young people with rare conditions, disease or disabilities allowing themselves to talk about how they feel openly whatever that may look like.  If they’re angry, then they can let it out in a safe space through the means of writing or art, and if they’re happy after finding a new treatment option or community to make them feel better then that’s great, too, and they can share their feelings with like minded young people.

I hope the RARE Youth Revolution provides a place where young people can connect and find other young people going through similar experiences, and in doing so, find support.

What are your hobbies outside of work?

Outside of work? What is this? Only kidding. I am a summer person and most of my hobbies are reserved for the summer time – I think the winter is for snuggling in and sticking on netflix for five months.

I would like to say that I am adventurous enough to go sailing in a storm, but I think I will leave that to the professionals. I love sailing and have a cute little pink boat known as a topper. During the summer months, I enjoy taking that to the reservoirs near where I live with my Dad and getting some wind behind the sails! I have always been a lover of water and being on it preferably.

I now have a post lockdown hobby and I feel that I can speak for 99% of the UK who decided to take up some kind of outside sport due to the restrictions. This is Paddle Boarding.

A lot of my family members are outdoorsy and love taking their row boats, inflatable boards and kayaks to the rivers around Kent and Sussex. We have been lucky enough to meet up and have had some great river trips over the summer. One five-hour paddle board, which nearly put me off for life, was interesting but still fun!

I have also had to adjust to another hobby in my life, which isn’t quite as relaxing as my usual water antics. My boyfriend races motorbikes and I have become part of the paddock crew. I love the race meets, as the weekends are great. You meet some amazing people and hopefully we will get back to it seriously next year!

What is your favourite book/film/TV show and why?

This is tricky. I love all the books I have ever read for different reasons, whether that’s A Little History of Philosophy by Nigel Warburton or The Shack by William Paul Young. They are very different, but equally brilliant in their own rights.

BUT if I had to choose based on the fact that I read it in very few hours, my all time favorite book to date has to be Happier by Derren Brown. The man is not only a magician, but a genius!

I think my love for philosophy and psychology meant that I couldn’t put the book down. Derren creates a short handbook based from his bigger book Happy (which yes I have now bought, I am this man’s marketing team’s dream fool) for living a fulfilling life based on stoic principles and it just made a lot of sense to me. I recommend it 100% to anyone that wants to understand themselves and their behaviour a bit more.

My favourite film has to be Baz Luhrmann’s Romeo and Juliet. I could not get over this when I was first introduced at school, partly because Leonardo Dicaprio, but I also love the way they created this delicate balance between shakespearean dialogue and modern day Verona. I think I am a real romantic and I love everything about this film; even the soundtrack is brilliant.

Talking of romance, I have recently fallen in love with the TV show ‘This is Us’ . It is a huge series set in America that follows a pretty normal-ish family through each member’s journey, I love the way it is filmed as there are lots of storylines all happening at once, and sometimes, they interlink. It is also super cool because they flash from present day to the past so you are aware of huge spoilers but not the details that make them so it keeps you hooked. Not sure if this is a good thing, but it makes me cry every time I watch it. It gets you right in the feels with its real rawness and reminds me everyday to not take anything for granted in this life, especially family!

Want to connect with Daisy and the Rare Youth Revolution team?

Meet Rare Youth Revolution’s Daisy Marriott!

by Blayne Baker time to read: 6 min