General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
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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Speech And Language In Individuals With Batten Disease (CLN2 And CLN3)- An International Study

Dear CLN2 and CLN3 families, Lottie Morison is a speech pathologist and researcher leading a project on speech and language in individuals with CLN2/CLN3. She has had an encouraging response so far but Lottie has asked if we might be able to…

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REGENXBIO Halts Enrolment Into Their AVV Programme For CLN2 – Q3 Earnings Conference Call- Statement By The Batten Disease Family Association

As part of its third-quarter earnings release on Wednesday, November 8, 2023, REGENXBIO announced a corporate restructuring that includes halting enrolment of patients into their development programmes RGX-181 and RGX-381 for CLN2 Batten disease (https://ir.regenxbio.com/news-releases/news-release-details/regenxbio-announces-updated-strategic-plans-and-third-quarter). The BDFA has been an…

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Survey Now Online- Re-submission Survey For Managed Access Agreement

SURVEY NOW ONLINE Dear Parents,  As requested, we have generated an online version of both the family and education surveys to generate data for the Brineura re-submission process. The format we have used allows us rights over the data but unfortunately means…

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