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…
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…
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…
Notice of Annual General Meeting of the Batten Disease Family Association NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held on Saturday 25th April 2020 12pm in the Davies Room The…
BDFA CEO APPOINTMENT The Board of Trustees of the BDFA is very pleased to announce the appointment of Amanda Mortensen as the BDFA’s new Chief Executive. As many of you know, Amanda has served as a trustee and then as…
As you recall, the Dementia Strikes Children Too campaign has been working to raise awareness of the conditions that affect our children and campaign for better access to services and support for our families since 2018. Now, building on the campaign’s success…