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…
Thursday 2nd November 8pm (until 9:30pm) (for mums of children and young people of all CLN variants) This is held once a month on Zoom and is a chance for mums from the BDFA community to come together in a…
Dear Families, Managed Access Agreement – Re-evaluation Submission We would like to invite all Parents and family members from the CLN2 community to take part in a meeting to discuss the BDFA’s submission to NICE for the re-evaluation of Brineura,…
We are looking for some amazing Christmas designs from our Batten community to feature on this years Christmas card! After the success of the past 2 years with our Christmas card design competition, it is that time of year again!…