Our Research Analyst, Kristina, attended the British Paediatric Neurology Association (BPNA) 2025 conference.
The conference was held from 8th – 10th January and was attended by doctors who specialise in the care of children with neurological disorders. We had a conference stand at the event to help raise awareness of leukodystrophy with doctors attending.
Our research summaries poster
BRIDGING THE GAP BETWEEN THE RESEARCH COMMUNITY AND THE ALEX TLC PATIENT AND CARER COMMUNITY
At the conference we presented poster about the development of our monthly research summaries. These summaries are shared on a monthly basis with our community members, professionals and researchers. They contain information about recent leukodystrophy research studies and clinical trials.
To view a PDF version: research summaries poster
Sessions at the conference
There was an interesting session called ‘Neurodegeneration’ The keynote speaker was Dr Chris Verity, Consultant Paediatric Neurologist who discussed the PIND study (https://www.rcpch.ac.uk/work-we-do/bpsu/study-pind-progressive-intellectual-neurological-deterioration). And there were oral presentations focusing on natural history studies and biomarkers in 3 neurological conditions, including Type 1 interferonopathies. AGS leukodystrophy is a type 1 interferonopathy.
There was a session called ‘Identifying Red Flags in Paediatric Neurology’. It addressed the challenges in diagnosing neurological symptoms in children, particularly distinguishing between primary neurological disorders and metabolic conditions. Dipak Ram, one of our medical advisors (https://alextlc.org/about/medical-advisors/), presented different clinical cases. He emphasised the importance of rapid diagnosis – metabolic and lysosomal enzyme tests should be done quickly, especially with how long MRI waits are – and to screen asymptomatic siblings.
