“I love going to Rangers and I’m now doing my Bronze Duke of Edinburgh Award…Batten disease will not stop me.” Annabelle Hover, aged 14, tells of the difficulties of living with CLN3 as a teenager, and the amazing achievements she…
“We can’t stay hidden away forever, there will be tough decisions... but for now we will keep on going and hope things start improving soon.” Donna Brown tells her story about the highs and lows of life in ‘lockdown’ with…
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…
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…
