UPDATE NEW DATE of Annual General Meeting of the Batten Disease Family Association Notice is hereby given that the 2021 Annual General Meeting of the Batten Disease Family Association to be held via Zoom video-conferencing on Saturday 9th July 2022,…
Thanks to Theranexus for sharing this update, and also for being one of our gold sponsors at the BDFA family conference in September. Theranexus is committed to support patients with rare neurological disorders by focusing all its research efforts on…
The BDFA is proud to offer an exciting new service for families. We have just completed our first Peer Befriending training course and have a team of peer befriender volunteers ready to support parents in the Battens community… ‘What is…
Dear all, Due to unforeseen circumstances, we have had to postpone our AGM that was being held on June 24th 2022. We are working on arranging a new date for the meeting and will communicate this new date with you…
“In my heart I know it was her time and asked to take my girl home… Bee taught us so much during our time together and those lessons will be there for the rest of our life.” Blanie White’s family…
“I would describe myself as very hands on dad and I love being able to look after Nicole and Jessica and their big brother Louis who is amazing.” Matthew Rich is dad to Louis age 11, Nicole age 10 and…
“Even when children seemed to be ‘locked-in,’ music could find a way in.” Rebecca Atkinson, researcher at the University of Brighton and Director of Chiltern Music Therapy tells how music therapy programmes have helped children with Batten disease I remember…
“The children and young people I have worked with, alongside their parents and carers, have taught me so much,” The inspirational Laura Lee is a Clinical Nurse Specialist at Great Ormond Street (GOSH), working with children and young people with…
“The hardest part of Batten disease is watching Jeffrey’s ability decline, but his smile and laugh keeps the whole family going.” Sheryl Lawson, from Accrington, talks about her son Jeffrey, five, his diagnosis with CLN2 Batten disease and how the…
“I try and help them all as best I can.” Sylvia Langford, from Devon, gives a grandmother’s perspective as she tells the story of her grandson Rio, 20, and how his diagnosis of Batten disease CLN3 has had an impact…