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Family Support Update

Thank you so much for supporting me and helping me to feel welcomed (and useful!) in my role. I have enjoyed a busy 6 months in post and feel I am developing a stronger understanding of who we support and…

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CLN3 Community News- November 2023

Dear CLN3 Community, Please find below some information about the ongoing research into CLN3, the Miglustat trial hopefully coming next year, and a link to the BDSRA Australia project looking to speech and language in individuals with Batten disease .…

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BDFA CLN2 Families Meeting, Thursday 21st Dec, 12pm- Re PR And Communications For Regenexbio News Last Month

   Dear Families,As per our communication on social media yesterday the BDFA would like to invite you to attend a short call on Thursday 21st December at 12pm.The purpose of the call is to update you on our PR and…

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Thank You! Our Big Give Christmas Challenge Total Is…….

A grand total of £12,242.50 including Gift Aidhas been raised through our Big Give Christmas Challenge 2023!Thank you! We would like to say a huge thank you for your support in raising such a phenomenal amount, which will fund our…

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One Donation, Twice The Impact! The Big Give #ChristmasChallenge 2023 Is Here And We’re Asking For Your Support!

Would you like to give the gift of companionship this Christmas and see your donation have twice the impact? The Big Give #ChristmasChallenge 2023 is here and we’re asking for your support! The Batten Disease Family Association are raising funds…

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Regenexbio Update Meeting For CLN2 Families, Wednesday 29th Nov, 12-1pm

Dear Families, Following the news two weeks ago that Regenexbio have halted enrolment into their development programmes RGX-181 and RGX-381, the BDFA would like to invite you to a call on Wednesday 29th November at 12-1pm. This is an opportunity…

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Managed Access Agreement For Brineura Survey Update, Deadline Monday 20th November

Dear Families, Thank you to those of you who have filled out the CLN2 survey. We have received some responses from both parents and teachers.  However, in order to make as much of an impact as possible on the outcome of…

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Summary Of Beyond Batten Disease Foundation Quarterly Family Research Call- Phase III Batten-1 Clinical Trial, Updates On CLN3 Research

Dear Families, At 4pm CST (10pm GMT) on 15th November 2023, Beyond Batten Disease Foundation held their quarterly Family Research Call. This was led by Mary Beth Kiser (CEO), Dr Ineka Whiteman (Scientific Consultant) and Craig Benson (Chair of the…

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🚹 NEXT DAD’S CHAT 🚹

Thursday 23rd November 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…

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Next Quarterly Town Hall Family Meeting

Next quarterly Town Hall Meeting Dear Families, The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 4.30pm on Friday 24th November. The purpose of the meeting is to provide families with…

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