Joint Statement to the Global Batten Disease Community On Thursday, February 15, 2024, important news broke regarding CLN1 clinical research that global Batten disease patient advocacy groups wish to share with the Batten community. A patient with CLN1 disease was…
It’s International Epilepsy Day - a day for coming together to raise awareness. Batten Disease is one of many rare and complex epilepsies affecting families in the UK. While everyone’s epilepsy journey is unique, we take many steps in common…
Dear Batten community, As many of you know, we have been awaiting further news regarding the future of the CLN3 and CLN6 gene therapy clinical programs led by Amicus Therapeutics. Today, we wish to share an important update relating to…
Join us for this parent led session to give other parents an insight to a blended diet and a family’s personal journey, enabling you to explore and share your experiences around the topic. Hosted by Holli Longley and Sarah Kenrick…
CLN5 Program Update Neurogene has completed enrolment of Cohorts 1 and 2 in the ongoing Phase 1/2 clinical trial for CLN5 Batten disease, and interim clinical data are expected in the second half of 2024. Neurogene is currently enrolling a…
Dear Parent’s, I have enjoyed speaking to most of you over the past 7 months and many of you have said how you would like to have informal meetings specific to your child’s CLN diagnosis, so Mimi Petty - Peer…
Join us for the next Mums chat! WEDNESDAY 17th JAN, 8pm on Zoom This is held once a month on Zoom and is a chance for mums from the BDFA community to come together in a relaxed setting and get…
Elpida Therapeutics will be hosting an open virtual meeting via Zoom on Thursday,January 18, from 3-4 p.m. EST (8-9pm UK time), to provide an update on the ongoing gene therapy trial for treating CLN7 Batten disease, which has been led…
The BDFA are really proud to share this fantastic new initiative from the Dodkin family through their Pedal4Memories cause. They have set up ‘Arthur’s Gift’ for siblings of children with Batten disease, to show that they are ‘loved, appreciated and…
Dear all, As we approach the end of the year I would like to express our grateful thanks to all the families in our community for their tremendous support this year. It has been a challenging year for the BDFA,…