General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  

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.


Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.