General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
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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Pedal4Memories Launches Arthur’s Gift Initiative

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…

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Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

Please note that from midday on Tuesday 3rd December – midday Tuesday 10th December  the donation link will take you to our Big Give Christmas Challenge page, donations made via this campaign page will be doubled!

The Big Give Christmas Challenge page will appear in a new window for you to make your donation. Don’t forget to tick the Gift Aid box if you are a UK tax payer.

(If you have any issues with making your donation, please contact sarahchandler@bdfa-.uk.org.uk)

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease