Wednesday 18 September 2013

Why we made ‘…the rest is up to me’ about teenagers with cystic fibrosis

Jacqueline Ali, Head of Information,
Support and Conferences,
Cystic Fibrosis Trust
Sometimes the Cystic Fibrosis Trust is perceived as an organisation that just exists to help parents of children with cystic fibrosis, rather than people who have the condition themselves, but that is not the case. It is important that we provide information and support to everyone affected by cystic fibrosis, whatever their age.

The aim of ‘…the rest is up to me’ is to show young people with cystic fibrosis that they aren’t alone; that there are lots of other young people dealing with the same issues they have (over 2,000 in fact!) and juggling the demands of cystic fibrosis and treatment with education, work and a social life. Cross-infection means cystic fibrosis can be isolating, and film is a great medium for overcoming this; we can show young people with cystic fibrosis in their every day lives. We also wanted to reach out to young people who don’t have cystic fibrosis, to help them better understand the condition and how it could affect someone they know.
Most importantly, we wanted to make a film that really represented young people with cystic fibrosis, and we got a fantastic range of responses when we put out the call. It was hard to try and include everything, but some key themes did emerge. From the feedback, it was clear that we had to strike a balance between presenting a positive message to young people, whilst not shying away from the more serious aspects of the condition. Showing young people with cystic fibrosis living life to the full and discussing the various issues in their own words enabled us to do this.

We hope that you will be inspired by the six young people in the film. Each of them has a very different experience of cystic fibrosis, but they all have one thing in common: as Holly says at the end of the film, while cystic fibrosis is definitely part of their lives, it doesn’t stop them living life to the full. The rest is up to them!

Please do let us know your thoughts on ‘…the rest is up to me’ by leaving us comments on YouTube or over on Facebook and Twitter. We’ll be following up this blog tomorrow with the experiences of some of the stars, so stay tuned.

As well as our fantastic actors and everyone that auditioned and provided suggestions for the script, we are very grateful to Genetic Disorders UK the charity behind,  Jeans 4 Genes Day, which provided the funding for us to make this film, and of course the production company Once We Were for putting it all together. We would also like to give special thanks to Mandy Bryon, Consultant Clinical Psychologist at Great Ormond Street, and Sejal Patel, Clinical Psychologist at Barts Health NHS Trust, for their helpful input on the script, and to Great Ormond Street for allowing us to film in the hospital.

1 comment:

  1. As parent to a very well 2 year old with CF, it was tough to watch. However, if we're serious about funding and getting the cure for CF, the message needs to be clear and hard hitting unfortunately. Good video that got the message across well.