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…
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…
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…
** BDFA NEWS ** A message from Laura Lee our amazing Clinical Nurse Specialist Hello, I wanted to share with you all the exciting news that I am expecting a baby boy in June and will be going on Maternity…
*** UPDATE *** BDFA MEDICAL WEBINAR- CHANGE OF TIME Wednesday 22nd April- NEW TIME 4PM Dear All, Just to confirm our BDFA medical webinar tomorrow. Please note the change in time of 4pm. Unfortunately Professor Gissen has had…
BDFA MEDICAL WEBINAR Wednesday 22nd April- 11am We are holding our first BDFA Medical Webinar next Wednesday at 11am. We welcome our guests for this event Professor Paul Gissen and clinical nurse specialists Laura Lee and Becky Bower. They will be discussing…
** Some brighter news ** The board of the BDFA is pleased to announce an urgent family grant scheme to support families caring for a family member with Batten disease with the challenges faced due to Covid-19. We have…
Cancellation of AGM on 25th April 2020 Dear all, It is with great regret that we, the BDFA, have had to make the disappointing decision to cancel our AGM in April. We hope that you understand, in line with organisations…
The LSD collaborative and partners have organised a Webinar about Covid-19 and all families are invited to attend. Monday 23rd March, 11-12pm Questions need to be submitted in advance. We understand it's an incredibly stressful time for you all. Please…