Dear Families,

You may be aware that there was a press release last week from Theranexus about the Batten-1 clinical trial for CLN3 (Theranexus_PR_Cash_Position_Dec_31_2023_VDEF.pdf).

Beyond Batten have followed this up in an e-mail to their registered families and the BDFA saying “Theranexus has run into some unanticipated delays. Options are currently being considered and we will schedule a family research call to follow up as soon as we have more definitive information and timelines to share with you.”

We will let you know as soon as we hear when the Beyond Batten research call is scheduled. In the meantime, if you require any further information, please contact Jo (joannanightingale@bdfa-uk.org.uk).