ISS UK has selected The Batten Disease Family Association (BDFA) as it’s registered charity for our fundraising activities to commemorate the UK leg of the ISS Global Lighthouse Relay Voyage. Batten Disease is the main paediatric neuro-degenerative disease in the UK. A child affected by Batten Disease will be born apparently healthy before developing epilepsy, losing their ability to see, walk, talk and eat, as well as developing dementia, before dying a premature death. There is no cure. The BDFA supports affected families on their journey with Batten Disease, brings further awareness to the disease and facilitates research into the disease process in order to develop therapies and future treatments.
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