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Message From Liz Brownnutt, Interim CEO

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,…

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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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