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…
BDFA Christmas Card designs winners are.......WELL DONE to our 3 winners Oliwia, Louis and Arthur, who are all siblings to young people with Batten disease. We will be in touch with our wonderful winners soon, and the cards will be…
BIG GIVE CHRISTMAS CHALLENGE 2022 – ONE DONATION, TWICE THE IMPACT! MIDDAY TUESDAY 29TH NOVEMBER TO MIDDAY TUESDAY 6TH DECEMBER We are very excited to share with you that the Batten Disease Family Association has been selected to participate in…
Would YOU like to be a BDFA PEER BEFRIENDER? The BDFA were proud to launch a new Peer Befriending service in 2022 to help support families in a way that only other parents of children with Batten Disease will be…