Dear Families,The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 7pm on Wednesday 13th March.The purpose of the meeting is to provide families with an update from the team and to…
Join us for this parent led session to give other parents an insight to a blended diet and a family’s personal journey, enabling you to explore and share your experiences around the topic. Hosted by Holli Longley and Sarah Kenrick…
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…
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…
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…
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…
This year the 18th International Congress on NCL was in Hamburg, Germany and was attended by our Head of Scientific Affairs, Dr Jo Nightingale. Here is her initial report. Before the main event there was a young investigators meeting and…
We’re proud to be one of the 41 small charities supported by Global’s Make Some Noise this year. Global is home to some of the UK’s biggest and best-loved radio stations including Capital, Heart, Classic FM, Smooth Radio and Radio X. On…
Learning and development news TRAINING FOR PROFESSIONALS SESSIONS, Oct 2023 The BDFA is pleased to offer training to, educators and paid carers, over the next three dates. This is for professionals who work with children/young people and adults who have…