BDSRA Australia is beyond proud to share this research news (and our second publication this week!).Progressive speech and language impairment is a prominent feature of Batten Disease, yet to date there has been no systematic characterisation of speech and language in this condition.
Understanding the decline in communication in Batten disease helps us better understand the disease biology, may be an important measure of treatment efficacy in clinical trials, and critically, can help inform families and clinicians’ in optimal speech & language therapy approaches.
BDSRA Australia is proud to have instrumentally supported this research in numerous ways from grant funding and participant recruitment, to families providing feedback on materials, and academic contribution from our Head of Research and Medical Affairs, Dr Ineka Whiteman.
This paper is freely available to read in the Journal of Inherited Metabolic Disease.
Free Patient Resources are also available, including Plain Language Summary of this research and Fact Sheets about speech & language in CLN2 and CLN3 Batten disease.
Thanks to the Translational Centre for Speech Disorders at MCRI.
Download the PDF resources here:
Our sincerest gratitude to the families across the globe who participated in the study, research leads Prof. Angela Morgan and Lottie Morrison, to the whole research team - including FOUR members of the BDSRA Australian Medical & Scientific Advisory Board, and fellow patient advocate groups BDSRA Foundation and Batten Disease Family Association
