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…
BDFA INSTAGRAM UPDATE! After a LOT of back and forth and trying to gain access to the BDFA instagram account, we have had to create a new account, so please follow us and tag the new #bdfa_battendiseaseuk https://www.instagram.com/bdfa_battendiseaseuk/ Come and…
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…
Dont Forget Batten Disease Awareness Day Tuesday June 9th 2020
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…
Today we joined forces with Rett UK to write to the Chancellor, Rishi Sunak, highlighting the funding gap for small, national VITAL rare disease charities like the BDFA. We are at the #invisiblefrontline and are #NeverMoreNeeded but we miss out…
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)…
A big welcome to Becky Bower, who will be covering Laura while she is on maternity leave from May A message from Becky, I just wanted to take the time to quickly introduce myself to you all. As you…