About Batten Disease

Library

Keep up with the latest developments in Batten disease…

On 17th June 2008 , a group of more than 40 family members, scientists, clinicians and professionals met at King’s College London for a discussion meeting entitled: “Where are we now and where are we going?” co-hosted by the Patient Organisation - the BDFA - and the Pediatric Storage Disorders Lab. The day included scientific updates from Dr Jon Cooper from King’s, a tour of the PSDL’s labs and discussions on experimental therapies being developed for Batten Disease. Julie Pickering, Chair of the BDFA also outlined the role of the BDFA in the ‘Batten Disease UK jigsaw’ in how we can significantly improve support and facilitating research and reported on the BDFA’s recent successful scientist-clinician meeting which took place at UCL in March 2008. Dr Sasha Scambler, a medical sociologist from King’s College London and a founding member of the BDFA, presented the BDFA-commissioned report findings on ‘The Support Needs of Families of Children with Batten Disease’.

The day was designed to update on what is being done towards finding therapies and what we can do to provide a better quality of life for our children. As the feedback from the day has been excellent – everyone found it very interesting and supportive - all agreed that another one should be organised in 2009 so the next one will be held on Tuesday 16th June 2009, again at Dr Cooper’s lab in London. If you are interested, please contact Jan Sablitzky, BDFA Development Officer 0115 965 4815 or email: info@bdfa-uk.org.uk for further information.