Hereford family’s heartbreaking film is shortlisted for national award | Action Medical Research

Hereford family’s heartbreaking film is shortlisted for national award

12 January 2018

 

A film featuring a local family has been shortlisted for the 2018 Charity Film Awards.

More than 40,000 members of the public voted for the range of films entered for the awards, which seek to recognise the vital role charity films play in raising awareness and fundraising.

Judges will now draw up a list of finalists who will be invited to an awards ceremony in London in March where the winners will be announced.

The five minute film explains the devastating impact of juvenile Batten disease, a rare condition which sadly affects three children from one Hereford family. Twins Corey and Toby, 14, and little sister Izzy, nine, are all affected.

Children with this heartbreaking condition experience a wide range of distressing symptoms including sight loss resulting in blindness, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues and, as the disease progresses, difficulties with chewing and swallowing. Tragically, the disease is fatal.

“You think it just can’t be happening to your children, it can’t be real,” says dad Jody Penn. “But deep down inside you know it is.”

The film also highlights the potentially groundbreaking work taking place at Cardiff University, where researchers funded by children’s charity Action Medical Research are dedicated to working towards the first ever treatment for juvenile Batten disease.

Jody and his wife Dee are delighted to know the film is reaching a wide audience: “For us it’s absolutely fantastic, as it means more awareness and will hopefully draw in more funds for this research.”

 

 ** Ends **

 

Notes to Editors

  1. The Juvenile Batten Disease film can be viewed here: http://www.charityfilmawards.com/videos/juvenile-batten-disease
     
  2. Hi res images of the family can be downloaded from the following links, please credit Ben Rector:

https://www.action.org.uk/sites/default/files/downloads/press/dsc_0011.jpg

Caption: Jody Penn and Dee Evans with their children twins Toby, Corey and little sister Izzy who all have juvenile Batten disease, plus daughter Amber (far left) who is not affected

https://www.action.org.uk/sites/default/files/downloads/press/dsc_0114.jpg

Caption: Jody Penn and Dee Evans with their children Toby, Corey and Izzy who all have juvenile Batten disease

https://www.action.org.uk/sites/default/files/downloads/press/dsc_0021.jpg

Caption: Izzy (right) who has Batten disease, with her sister Amber (left)) who does not have the condition

  1. Family support and information is available from the Batten Disease Family Association at www.bdfa-uk.org.uk. The support line is 0800 046 9832.
     
  2. Toby, Corey and Izzy are affected by CLN3, commonly known as juvenile Batten disease. Commonly referred to as Batten disease, Neuronal Ceroid Lipofuscinoses (NCLs) denotes a group of several different genetic life-limiting neurodegenerative diseases that share similar features.
     
  3. Dr Lloyd-Evans’s research is focused on abnormalities in calcium control in the body. He also plans to investigate the potential effectiveness of drugs called calcium antagonists, in the hope that they could offer the basis of a treatment for juvenile Batten disease. More information can be found at: https://www.action.org.uk/our-research/juvenile-batten-disease-could-widely-used-medicine-help-children-devastating-rare-condi

 

For further information on Action Medical Research:

Please contact Kate Lee, Research Communications Officer (Mon-Weds)

T: 01403 327478

E: klee@action.org.uk

W: action.org.uk

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Action Medical Research is a leading UK-wide charity saving and changing children’s lives through medical research. For 65 years we’ve helped pioneer ways to prevent disease and develop treatments benefiting millions of people. Our research has helped to beat polio in the UK, develop ultrasound, fight meningitis and prevent stillbirths. But we urgently need to develop more new treatments and cures for sick babies and children and we can’t do it without you.

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