We are writing to announce our intent to restart research activities funded by the BDFA, in collaboration with families. As you know, we had to pause this. Research is a key commitment in our plans and we are excited to be…
Come and join our team as our new Head of Fundraising.The BDFA is looking to diversify its income streams, secure its future and grow the support it can offer to families.We are looking for a strong fundraiser who has a…
POST TO THE BDFA- URGENT UPDATE 16 September 2020 We are currently not receiving any of the post that is being sent to our head office in London. There is an issue with the redirect currently which fingers crossed will…
BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…
International Batten Disease Awareness Day Tuesday 9th June 2020 4 DAYS TO GO! We are getting very excited about Batten disease awareness day next Tuesday 9th June which we are sharing with international peers. We are kicking off our awareness…
ONE WEEK TO GO until International Batten Disease Awareness Day! What you can do to raiseawarenes and be orange on the day? Use #battendiseaseuk #battenday2020 on your social media posts Dress in orange, but not just you, the dog, the…
Conference News Postponement of our face to face conference As I am sure you will understand, we have made the difficult decision to postpone our conference due to Covid19. The future is uncertain and October feels too soon for…
BDFA Financial and Organisation Update May 2020 We held a zoom meeting earlier this month to discuss the BDFA’s accounts (year-end August 2019) and we were joined by 11 parents as well as professionals working in the Batten arena.…
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…
Virtual ‘family’ meeting to share our future plans and financial position Friday 1st May from 2-3.30pm The BDFA is pleased to invite you to a virtual ‘family’ meeting on Zoom to discuss our latest accounts (year end August 2019)…