Words by Smiley Team
For the first time ever, people living with motor neurone disease (MND) have used their voices to read aloud a story, in a one-of-a-kind ebook called “I Will Always Be Me”.
It aims to improve the quality of life for people with MND, make a tangible difference and help raise awareness of the rare condition.
The story is written from the perspective of someone living with MND, explaining to their loved ones about the condition and their experience with the disease. The author, Jill Twise, is a New York Times bestseller, and the book takes less than half an hour to read. It’s designed to be a shared experience for all family and friends to be a part of.
It uses a communication technique called voice banking, which enables someone with MND to record sample words and phrases that can be used as a synthesised version of their voice. MND can cause weakness in the tongue, lips, vocal cords and chest – which causes speech to become faint, unclear or slurred – so voice banking can help make speech and communication easier.
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After finishing the story, the recording is uploaded and transformed into a digital voice by SpeakUnique, which can then be used with communication devices when needed. The result is a digital voice that can create any word or sentence with the same characteristics as the original voice.
Michael, who is living with MND, was able to trial the book in his home ahead of the launch. “When I was diagnosed with MND I decided I can sit back and feel sorry for myself, or I can do something positive to help others,” he said.
“Being involved in I Will Always Be Me was absolutely brilliant – my family were there to support me, and we all had a fun day. I’m hoping this project will lead to a much better understanding and awareness of MND, not just for families and friends, but for the general public as well.”
(Read more about this man living with MND who took on an 100 mile trek)
The book is dedicated to the memory of Brian Moss, who died of MND in 2014. His son Stuart, Head of IT Innovation at Rolls Royce, decided to help improve the lives of others affected by the disease, and so created the NextGen Think Tank in 2019, alongside the MND Association.
Many companies including Intel and Companies Dell Technologies came on board, and helped develop I Will Always Be Me.
Nick Goldup, Director of Care Improvement at the MND Association said: “Voice banking is incredibly important for someone diagnosed with MND, but traditionally it could be extremely time-consuming, laborious and often a very lonely process for the person taking part.
“We wanted to change that – and so we are incredibly proud that I Will Always Be Me is a completely different experience. People with MND have been at the heart of this project from the very start so it was important for us to develop something that was easy to use, engaging, and offer the opportunity to become a long-lasting, treasured resource.”
GET INVOLVED: You can find out more about the story, and even have your voice banked yourself, on the I Will Always Be Me website.
DONATE: Donate to the MND Association to help support their mission on beating MND.
VOLUNTEER: The MND Association is always looking for more volunteers.
