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…
After the success of last years BDFA Christmas card design competition, we are launching it for 2022! Make your design colourful and Christmassy and send it into us and your design could be chosen for our Christmas card this year.…
Has someone gone the extra mile to support you or a member of your family with Batten disease? This is your opportunity to highlight the very best practice across the UK and thank them in a really special way! We…
We are pleased to announce that we will be running the Pride of Batten awards again this year. This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family…
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…