Child smiling

Murdoch Children’s Research Institute (MCRI) PhD candidate Ms Lottie Morison (pictured below) has been awarded a Batten Disease Research Grant for $13,950 to help improve the quality of life of children with Batten disease, also known as neuronal ceroid lipofuscinoses (NCL).

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Batten disease is a family of progressive, degenerative brain disorders that mainly affect children. Batten disease symptoms include changes in a child’s behaviour, progressive loss of vision, complex movement disorders and seizures. Children with Batten disease also experience a gradual loss of speech and language, cognitive abilities, and fine and gross motor skills.

The gradual loss of speech and language skills can cause serious communication problems for children and is the focus of this MCRI-led research. Ms Morison aims to characterise speech and language decline in CLN2 and CLN3 disease, two of the most common forms of Batten disease.

Ms Morison said, “Carefully recording the speech and language symptoms in Batten disease has not been done before and we believe these may be a valuable measure of disease progression and may serve as useful biomarkers for assessing the efficacy of precision medicine trials.

“We are especially excited to be working with the children living with Batten disease and their families, in partnership with BDSRA Australia.”

Dr Ineka Whiteman from Batten Disease Support and Research Association (BDSRA) said, “We are very proud to support this patient-focused research that will address some important gaps in our current knowledge of Batten disease.

“As children with Batten disease lose speech and communication abilities, the everyday things that most of us take for granted become harder. It's a huge challenge not only for the affected child, but the entire family unit." 

Ms Morison’s research is supported by fellow researchers at MCRI and multidisciplinary researchers from around Australia.

Ms Morison is a part of the Speech and Language group at MCRI which is headed by Professor Angela Morgan.

Funding

This project is supported by BDSRA Australia.