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…
The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten disease to maximise their quality of life and secure the…
Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day; thank you for all your support. We have put together…
What is cerliponase alfa? Cerliponase Alfa, which is marketed as Brineura, is the first disease-modifying treatment for any type of Batten disease. Children with CLN2 Batten disease have a genetic mutation which prevents them from producing enough of an enzyme…
NICE Decision - 22.02.2019 We are very disappointed that NICE has published their decision not to recommend Cerliponase alfa, also known as Brineura, as a treatment for CLN2. This is a dreadful blow to all those with children on treatment,…
With your support we can help support families living with the devastating diagnosis of Batten disease
Thank you for making a donation to the work of the BDFA.
The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.
Thank you so much for your support
How your donation can help
£5 a month
provides a support and information
folder for a newly diagnosed family
£20 a month
helps to run our family support services
£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease