Elis Norton

162 mile walk

Fundraising for Batten Disease Family Association
£140
raised of £1,000 target
Donations cannot currently be made to this page
Event: Walk for Addy, on 15 November 2020
This is a collaborative fundraiser bringing together families whose children have CLN2 Batten disease and are currently receiving treatment. Working with the BDFA, we are raising money for a potential treatment that may save our child's sight.

Story

I am looking to raise funds to help the BDFA towards a potential treatment which could save the eyesight of children with CLN2 Batten Disease. Among the many cruel symptoms of Batten disease and one that strikes fear into every parent is the loss of eyesight. The thought that their children will not be able to see their faces again is terrifying. It is believed that giving Brineura (the drug that is given during enzyme replacement therapy [ERT]) into the brain will not help save the sight because it is not known if it has the ability to cross through into the retina. Sadly there are some children who, despite receiving ERT, have lost their sight. Clinical trials for this are in early phases in Hamburg and Ohio and the Great Ormond Street team are in the process of exploring if they could conduct a similar programme in London. This will give children the chance to have the same opportunity. Please be part of something special and help us make a difference!

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About the campaign

This is a collaborative fundraiser bringing together families whose children have CLN2 Batten disease and are currently receiving treatment. Working with the BDFA, we are raising money for a potential treatment that may save our child's sight.

About the charity

Batten disease is a group of rare, progressive neurodegenerative, genetic metabolic diseases that occur in children & adults worldwide. The BDFA's Vision is to be the central point of excellence in the UK for supporting affected families funding research into a potential cure.

Donation summary

Total raised
£140.00
+ £10.00 Gift Aid
Online donations
£140.00
Offline donations
£0.00

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