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Children with neurodegenerative disease and visual impairment will be supported in their music education

Harriet Clifford

Music service launched for visually impaired children with neurodegenerative disease

3:00, 11th November 2020

On 16 November, the Amber Trust and the ISM Trust will launch With Music in Mind, a new music service aimed at transforming music provision for children and young people with neurodegenerative disease who are visually impaired. 

The new service provides parents, carers, teachers, and therapists with free, specially designed resources and offers families weekly music lessons or family sessions from specially trained music practitioners. These sessions, which will be available online, will aim to support engagement with music, as well as focus on language and communication.

With Music in Mind follows a recent research project undertaken by Professor Adam Ockelford at the University of Roehampton, which indicated that some children with neurodegenerative disease are able to keep using words for months or even years longer if they are sung rather than spoken.

Neurodegenerative disease, or dementia, in children is rare, but the effects are devastating for the child and family. Children gradually lose their ability to communicate, move, or think. This service has been made with children suffering from ‘Batten disease’ – a neurodegenerative condition which causes children to go blind – in mind, but will be accessible to all children with similar needs. 

Adam Ockelford, trustee of the Amber Trust and professor of Music at Roehampton, said, ‘Research by the University of Roehampton shows that music can play a unique and vital role in the lives of children with juvenile dementia, and I am delighted that, with the generous support of the Linbury Trust and the GC Gibson Charitable Trust, we are able to offer a new, targeted service for families who are affected across the UK.’

The Amber Trust is a national charity dedicated to supporting visually impaired children with their musical education and aspirations. The partnership with the ISM Trust, the Incorporated Society of Musicians’ sister charity, began with the launch of Amber Sound Touch, an online teaching resource specifically for teachers working with blind or partially sighted children. Launched in June, nearly 300 participants attended the webinar, and 1,200 users accessed the website within the first three months. 

Chief executive of the ISM, Deborah Annetts, said, ‘Creative subjects have never been more important to wellbeing for children, but we recognise that barriers to inclusion remain. That is why we are proud to support initiatives for accessible music-making so even more young people can enjoy the rich benefits of participation in music. 

‘This new music service will not only provide a fantastic benefit to children with visual impairments and juvenile dementia, but will also help tackle family isolation at this difficult time.’

With Music in Mind will launch on 16 November at 4pm with a webinar hosted by the ISM Trust. To attend, register online



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