Our colleague Dave has a daughter called Addy who has been diagnosed with Batten Disease. As the Directors of Youth for Christ Centres across the South West of England we stand together to support Dave and his family and the other families affected by the disease.

Addy will have to travel a 162 mile round trip to Great Ormond Street Hospital every other week for treatment. We are trying to complete that equivalent journey by walking, cycling or running by the end of 2020. We all run charities and have full lives, getting that mileage in over six weeks will be a challenge. However, that challenge pales into insignificance next to the challenges Addy and her friends face.

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!