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Latest research has shown the importance of singing with Juvenile Batten Disease. Do you know someone with a diagnosis of JNCL? Would they be interested in taking part in a project about music?

Who can participate?

If you are the parent or guardian of a child aged between 0-18 years who has a diagnosis of Juvenile Batten disease, then this project may be of interest to you. The University of Roehampton are looking for children and education staff to participate.

What will happen?

The project will be looking into the impact of singing on speech and language skills in JNCL. Education staff will be asked to run through a 10 minute daily singing program with your child over the course of year. The aim is to see whether the program can help to maintain speech and language skills. Staff will be asked to make short videos of the music protocol using an app on their mobile phone or other device, which will be analysed as part of a doctoral study with the University of Roehampton.

What should I do next?

Please get in touch! Call Rebecca Atkinson on 01442 780541 or email atkinsor@Roehampton.ac.uk by 24 July 2019.

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With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease