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A Quick Reminder, it is not too late to sign up!


Just a reminder that we have our ‘pre-AGM’ family meeting tomorrow at 2pm on Zoom about the BDFA’s accounts (year end 2019) and our current position and future plans. Please email to sign up.

It would be great to see as many families as possible on the call but we recognise everybody is under extra pressure at the moment. We will summarise the meeting for those who can’t join us.

The meeting will be chaired by our new Treasurer, Richard Whitbread. Richard joins us with a wealth of financial experience with 25 years experience as a Senior Financial manager in the Consumer Goods industry until he retired 6 years ago. Richard is a bereaved parent and his daughter Stephanie, who had CLN3 Batten disease, died in 2013 at the age of 22.

Welcome to Richard.


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 Thank you for doubling your donation!