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…
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…
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…
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…
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…
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…
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…
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…
Great news! We have decided to re-open the nominations for this year’s Pride of Batten awards! Unfortunately, we have not had the response of nominations like previous years, so to give you all more of a chance to nominate, we…
Bertie’s Helpers provides a week’s food shop delivered to the door for families with children with Batten disease who are going through a time of crisis. Mimi and Andrew Petty set up Bertie’s Helpers in memory of their son Bertie…