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Motor Neurone Disease Association and tech innovators collaborate to produce I Will Always Be Me

The book, the first of its kind, is for people living with MND and banks their voices as they read aloud

Motor Neurone Disease book

Intel and Dell Technologies – in collaboration with the Motor Neurone Disease Association (MNDA) and Rolls-Royce – have worked alongside VMLY&R to produce a new book called I Will Always Be Me, for people living with motor neurone disease (MND). The first-of-its-kind book is for people living with MND and banks their voices as they read the story out loud.

I Will Always Be Me is a book written by Jill Twiss, a New York Times bestselling author and is told from the point of view of a person living with MND. The narrative explains the person’s journey, describing what they will be going through, including insightful thoughts and feelings in an informative and accessible way via an immersive virtual experience.

As a neurodegenerative condition, MND deteriorates muscular nerve cells, taking away a person’s ability to talk. The project aims to simplify and humanise the person’s experience through integrating the highly emotional task of explaining their condition to loved ones with the use of voice bank technology. It is hoped that this integration will encourage people diagnosed with MND to take action earlier on in their diagnosis.

The creators launched the project by producing a documentary which showed a group of people living with MND and their respective families as they see the book for the first time.

Lama Nachman, Intel Fellow and director of human & AI systems research lab at Intel Corporation said: “What I think is brilliant about this project is that you’re asking people to do something that’s very natural to them. True accessibility is about recognising the human experience and building around it.”

For those interested in learning more, people can learn about how the programme works by visiting the website’s homepage and can begin the recording from there. The book opens and the user’s voice is automatically recorded as they read through the book to their loved ones.

Nick Goldup, director of care improvement at MNDA, said: “We’ve seen the impact of people reading the book and it’s an impact that is not just about making the voice banking process easier. ‘I Will Always Be Me’ gets the heart and soul of people battling MND.”

Every sound needed in order to create a digital voice is embedded into the story naturally. Once the reader has finished the book, their digital voice can be processed efficiently. As soon as the pages are recorded, they can review and listen back to their recording, with the opportunity to re-record pieces if they would like to.

When the user is ready, they are able to share their recording with SpeakUnique to request their digital voice, with the ability to share their recorded version of the book with family and friends through a unique link.

“This is something that you can share with other people to explain what you’re going through. Beyond banking your voice, the experience becomes a memory and this book is an heirloom that will be there forever,” said Stuart Moss, head of IT innovation at Rolls-Royce.

The process of voice banking involves extracting specific sounds from the recording and matches them with pre-written text. Through the use of an algorithm, unique vocal qualities are then applied – based on age, gender accent etc – to produce a synthetic voice which can then be installed onto any assistive technology device.

“This is a lovely way to bank your voice. Do it now while you can record your voice with all your character, and your intonation, and the way you move through a sentence,” said Ursula, a
person living with MND who banked her voice with I Will Always Be Me.

The book is available at and a video of the documentary can be viewed here.

Article by
Fleur Jeffries

8th March 2022

From: Healthcare



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