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News
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BDFA Support Team Lead, Rachel Griffith, talks of her family's experience We would like to share with you Rachel and Pete Griffith talking recently on a local TV channel about their family’s experience of Batten disease and the BDFA. Rachel was a former Chair of the BDFA and is now one of our LINCL family befrienders and Pete organised our great sponsored walk in 2008. Could you share your family story? Do you have a personal story about your experience of Batten Disease that you may be willing to share in a public way? As a charity with a growing presence in the media, we are beginning to be called upon to provide "personal stories" to accompany news items about the work we do and what we are trying to achieve. Our aim is to build up a database of families who have a personal story to tell. Putting a face to Batten Disease in any story makes it far more accessible to the public and ultimately will help us raise awareness of the disease and the BDFA. In this way we hope to raise more funds which can be put into further research and family support. If you would like to find out more, please contact Jan Sablitzky our Development Officer here at the BDFA for an informal discussion. We also would appreciate it if you let us know if you set up eg a YouTube link or FaceBook page or your own family website or justgiving.com page – it all helps to raise awareness especially if you put the BDFA’s website link on www.bdfa-uk.org.uk somewhere.
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