The BDFA is the only charity dedicated to supporting families and children affected by Batten disease, a terminal and devastating neurological condition. As Chair of the BDFA I know how much families need support and what a difference we make to families. We have two regional support workers and a specialist nurse at Great Ormond Street as well as a volunteer who is an education expert. We also support families through the very complicated system around access to drugs and have recently successfully secured a positive result for Brineura, for one type of Batten disease, CLN2. We are a tiny charity doing a big job and rely almost entirely on events like this, with no government or local authority funding. I know many of my friends are involved in so many brilliant charities, even a few pounds is a huge help!! Amanda