Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…
Launching later this week the BDFA will have special Easter hunt buckets available to buy from our online shop, filled to the brim with delicious chocolates, including some specially wrapped in BDFA colours and our logo. Our wonderful supporters, Beefy's…
We believe it's important to work together with our global patient advocacy partners to share important research updates in a unified, timely, and factual manner. Our network of organizations has worked together on this statement to share with our families…
The BDFA is very pleased to announce that Dr Joanna Nightingale, our part-time Scientific Officer, will take up a new expanded role from April. Joanna will take up the role of Head of Scientific Affairs, a full-time post which will…
New advance to the Theranexus and BBDF Batten-1 program for juvenileBatten disease (CLN3) Read the press release from Beyond Batten and Theranexus regarding Phase I/II trial data at the link below. https://beyondbatten.org/wp-content/uploads/2023/01/Theranexus_PR_Batten-1_Program_VDEF.pdf They are hosting a Quarterly Family Research call…
Following on from our successful family conference in September, we have set the date for our Family conference in 2023! We had some wonderful feedback from the conference, so we are working hard make 2023 even better. One big change…
Why not kick off 2023 with a new challenge to help support other Batten families! The course starts on Tuesday 24th January 2023, where you will have expert training and become a vital part of our wonderful Peer befriending volunteer…
An important official update from REGENXBIO on gene therapy developments for CLN2 Batten disease, read the press release here or via the link. December 21, 2022 at 7:05 AM EST RGX-181 and RGX-381 are potential one-time AAV Therapeutics for the…
Every emotion resonated at our family conference in Stratford Upon Avon last weekend, the first in five years. The joy of reunion, the power of connection, the comfort of camaraderie… it was such a special weekend with tears and laughter…
Exciting update from Theranexus regarding clinical trial in 2023 for CLN3 Please read the article below
With your support we can help support families living with the devastating diagnosis of Batten disease
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