Batten Disease Newsletter ISSUE 31 AUTUMN/WINTER 2015 from the only dedicated UK charity raising awareness, providing support and funding research into Batten disease Batten Disease Family Association Registered Charity No. 1084908 01252 416323
[email protected] www.bdfa-uk.org.uk The Old Library, 4 Boundary Road, Farnborough, Hants. GU14 6SF 2 Dear Member From our Chief Executive From our Chair Dear BDFA members, friends and Dear all, colleagues, In our Spring newsletter, Andrea and I wrote When I sit down to write my piece for the about the new members of our staff team. I BDFA newsletter it always gives me the am very pleased to report that the staff have opportunity to take some time and look settled in well and are greatly enhancing our at what has been achieved over the past work. As a Board we consistently challenge few months. A wise friend always says that ourselves on every penny spent by the BDFA Andrea sometimes we are so focussed on getting so it has been very pleasing to see the benefits to where we want to be that we forget how that investment in our infrastructure and staff far we have come. The end of our journey is a much longed-for world Mike team has made. without Batten disease but we sometimes forget that we get there by all the single steps taken by our fundraisers, members, supporters As I write this report it is sad to see a major UK charity, Kids and families who live with this disease and its legacy every day.