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Children’s charity Action Medical Research is funding research into juvenile Batten disease – a rare, progressive and life-shortening disease that, sadly, affects three children from one Hereford family.
Now, through The Big Give Christmas Challenge fundraising initiative, the charity is pleased to announce the opportunity for donations to this vital research to be doubled for one week only.
Toby Tennant, Head of Relationship Fundraising at Action Medical Research, explains: “The Big Give Christmas Challenge is open from midday on Tuesday 28 November to midday on Tuesday 5 December. It’s a fantastic opportunity to make your donation go further, since donations of any size can be doubled.
We already have a number of generous pledges and are hoping to raise £40,000 to support this research. The study, led by Dr Emyr Lloyd Evans at Cardiff University, aims to develop a treatment for this cruel disease. By donating through the Big Give Christmas Challenge you can help children in the future.
Donations can be made using a credit or debit card and we would greatly appreciate your support, however much you can afford to give.”
For parents Jody Penn and Dee Evans, from Hereford, the possibility of clinical trials leading to an eventual treatment means everything. Their twin boys Toby and Corey, 14, and daughter Izzy, nine, are all affected by juvenile Batten disease.
Children affected by juvenile Batten disease experience a wide range of 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. And tragically, the disease is fatal.
Commenting on the study supported by Action, Jody says: “We know it will take time, and there won’t be a cure in our children’s lifetime, but we just hope that one day other families won’t have to go through what we’ve been through.”
The Big Give Christmas Challenge opens at 12 noon on 28 November: https://secure.thebiggive.org.uk/projects/view/27237.
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Notes to Editors
- 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
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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.
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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.
- 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/research/juvenile-batten-disease-could-widely-used-medicine-help-children-devastating-rare-condi
- The Big Give Christmas Challenge, founded by entrepreneur and philanthropist Sir Alec Reed CBE, is the UK’s biggest online match funding campaign, helping UK-registered charities raise funds for their cause. It offers supporters of participating charities the opportunity to have their donation doubled during the week of the campaign. Since the Big Give launched the campaign in 2008, the Christmas Challenge has raised over £78 million for more than 2,800 charity projects.
For further information on Action Medical Research:
Please contact Kate Lee, Research Communications Officer (Mon-Weds)
T: 01403 327478
Follow us on Twitter at @actionmedres and @amr_events
Like our Facebook page at facebook.com/actionmedres
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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.
Join our fight for little lives today.
Charity reg. nos 208701 and SC039284.