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NEXT DAD’S CHAT, Wednesday 28th February At 8pm

A chance to come together on Zoom with other dads from the BDFA community and have a chat.Led by trained Peer Befriender Andrew Dawkins and James Yarrow. If you are interested in joining the session or to find out more,…

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Theranexus Update For CLN3 Programme

Dear Families, You may be aware that there was a press release last week from Theranexus about the Batten-1 clinical trial for CLN3 (Theranexus_PR_Cash_Position_Dec_31_2023_VDEF.pdf). Beyond Batten have followed this up in an e-mail to their registered families and the BDFA…

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Taysha Gene Therapies Provides Update On Deprioritized Pipeline Programs

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…

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International Epilepsy Day

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…

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Joint Statement To The Global Batten Disease Community Regarding The Future Of The CLN3 And CLN6 Gene Therapy Clinical Programs Led By Amicus Therapeutics

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…

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Join Us For Parent Led Zoom Meeting, Understanding Blended Diets For Children With A Gastrostomy

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…

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Neurogene Announces Business Update And 2024 Outlook, CLN5 Program Update

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…

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New CLN Group Meetings                                Facilitated By Sarah Kenrick And Mimi Petty

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…

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Next Mums Chat, Wednesday 17th Jan, 8pm

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…

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Update On The Ongoing Gene Therapy Trial For Treating CLN7 Batten Disease, Hosted By Elpida Therapeutics

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…

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