National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…
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…
*** 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…
One of our parents, Amanda Harrison, writes about her experience of lockdown during Coronavirus. Her feelings of isolation will resonate with many. Likewise, issues accessing shopping slots and the loss of key support such as the family's local hospice. Thank…
** 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…
