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Dear families,

Please find details and link below to attend a meeting being held by Beyond Batten on November 15th at 9pm GMT, giving updates on research and sites for the Batten-1 (Miglustat) Phase III clinical trial. This meeting is being recorded for all those unable to attend.

If you have any questions you would like answered, please send them to Jo at who will forward them on to our contact at Beyond Batten. I will also be attending this meeting in person, so if anyone thinks of a question nearer the time or doesn’t want to ask it themselves on the call, I will be able to represent you.

We are also in communication with Theranexus, the company who manufacture Miglustat, and there is also the possibility of meeting them directly either later this year or early next year. I will keep you informed of this if it goes ahead.

As always, if you have any questions about ongoing research, please give me a call or send me an e-mail.

Kind regards,


Dear BBDF Family Partners,  

Please join our next quarterly family research call on Wednesday, November 15th at 4:00 pm CST. 

We will announce the sites for Phase III Batten-1 clinical trial, answer your questions, and provide updates on CLN3 research.  

Please register to participate in the family call –    

If you are not able to attend, we will make a recording available after the meeting.  

We look forward to seeing you on the 15th.   


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