£10,000 donation to help motor neurone sufferers ‘bank’ their voices

  • Jersey charity donates to UK ‘voice-banking’ scheme
  • Project aims to help motor neurone disease sufferers record their voices for use when they lose the power of speech
  • Existing technology provides only a limited choice of synthetic voice recordings

A JERSEY charity has given £10,000 to a project which could help Islanders affected by a debilitating disease to reclaim their voices.

The Jersey Motor Neurone Disease (MND) Association has given the donation to a voice-banking scheme which aims to create personalised synthetic voices for those who lose the ability to talk because of their condition.

Currently, people who suffer from the progressive illness, which attacks the nerves in the brain and spinal cord, can communicate using aids that generate synthetic speech. These are linked to a keyboard or an eye-tracking system, such as the one MND sufferer Stephen Hawking uses. However, users are often limited to a choice of just a few voices, few of which are British. There is also a lack of regional British accents.

Theoretical physicist Stephen Hawking was diagnosed with a form of motor neurone disease in 1963. He controls a speech-generating device with a single cheek muscle. The American, synthetic voice recording he uses is no longer produced, but has become an identifying part of the physicist's character

Now clinical researchers have teamed up with the University of Edinburgh’s Centre for Speech Technology Research to try to create specialist software that will enable people to ‘bank’ their voices for when they lose their speech.

The national MND Association has contributed £127,000 to the £227,000 project. The Medical Research Council and the University of Edinburgh have made up the rest. It is hoped that the project, which started in 2012, will be completed by autumn 2016.

Dr Belinda Cupid, head of research at the MND Association, was due to visit the Island today to give the charity an update of the progress of the project.

She said: ‘Eighty per cent of people with MND have problems with speech and swallowing, causing them to lose their voice.

‘There are communication aids but they don’t sound like the person; voices are distinctive. We are hoping to create something that means people don’t lose part of their identity.’

Six people in Jersey are known to be living with the condition and Dr Cupid, along with her team, will also meet Island medics and carers to talk about the latest research the UK association is working on.

Margaret McGovern is the chairwoman of the Jersey MND Association

Margaret McGovern, chair of the Jersey MND Association, said: ‘All the funds raised in Jersey stay in Jersey, but whatever research projects that are under way in the UK, which local Jersey people will benefit from, we see if we can help.

‘I think this project will make a wonderful difference to people. It will help people with MND not to feel as if they are robbed of their own voice and their own communication skills.’

She added that the Jersey branch had previously used funds to help Islanders cope with their condition through paying for items such as a mobility scooter, a stairlift and a laptop.

The Jersey association will be collecting money from the Market Square Fountain between 28 May and 11 June.

  • Motor neurone disease is the name given to a group of related conditions that affect nerve cells (motor neurones) in the brain and spinal cord
  • Life expectancy for most people diagnosed with the disease is between two and five years. Around half of sufferers die within 14 months of diagnosis, but Professor Stephen Hawking, who has a rare, slow-progressing form of MND, has lived with the condition for 35 years
  • It can affect any adult at any time, with more men suffering from the disease than women
  • MND can leave people unable to walk, talk or feed themselves, but sufferers’ brain power remains unaffected, as do their senses
  • The cause of the condition is not known and there is no cure
  • There are thought to be around 5,000 sufferers in the UK at any one time

Not all MND sufferers go on to experience problems with speech.

However, those that do face huge challenges in expressing themselves or holding a conversation.

Technology has moved on a great deal over the years from a time when those with MND may have had to spend minutes spelling out a single word with a helper using a letter board.

Some who lose the power of speech because of MND can use sophisticated devices like this eye-controlled speech screen

For some years now synthetic voice devices have been available to give those who can no longer control their vocal cords the power of speech.

MND can leave those afflicted with weakness in the muscles of the tongue and lips, making speech difficult or altogether impossible. They can have particular difficulty with the letters p, b, t, d, k and g.

Communication can be aided through the simple use of pen and paper, writing boards or communication charts that carry different words and phrases.

More sophisticated devices include voice amplification units, for those still able to speak, but at a quieter level, computer programmes controlled by the user or voice output communication aids for people who have difficulty speaking.

Today laptop, tablet and smartphone applications are being developed to provide convenient help for MND sufferers.

By banking their own voice, MND sufferers may be able to use it later if speech becomes impossible.

Motor neurone disease, sometimes called ALS (Amyotrophic lateral sclerosis) in America, sparked a charity challenge that went viral on social media in the summer of 2014.

People around the world, including some of the planet’s most famous celebrities, filmed themselves tipping buckets of ice water over their heads to raise awareness about the condition. The so-called ‘ice bucket challenge’ would then be issued to one or two friends of the participant, who were also encouraged to repeat the process.

Staff from State Street, a finance firm, gathered on top of Green Street car park last year for a group ice bucket challenge

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