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 held its first Peer befriending retreat this past weekend in Surrey, gathering together some of our wonderful peer befriending volunteers for some training and connection time as a team. We have also just started our second Peer Befriending…
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…
🚹 Join our friendly Dads chat session on Thursday 2nd February at 8pm on zoom. 🚹 The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained…
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…
Our Christmas cards for 2022 are on sale in the BDFA shop on the website now! Pack of 12 cards includes 4 from each of our design winners and included envelopes. Visit the BDFA shop here Take me to the…
Date change SATURDAY 3rd DECEMBER 2pm Via Zoom The nominations were outstanding this year and the judges have had a tough job on their hands choosing our deserving winners and runners up for this years Pride of Batten awards. We…