MND is a neurodegenerative condition that deteriorates muscular nerve cells, ultimately taking away an individual’s ability to speak over time. 

To raise awareness of the condition and support those navigating it, Dell Technologies and Intel, in partnership with the Motor Neurone Disease Association and Rolls-Royce, have teamed up with VMLY&R to create “I Will Always Be Me”. The campaign includes the creation of a first-of-its-kind book for people living with motor neurone disease (MND) that banks their voices as they read aloud. 

Written by New York Times bestselling author Jill Twiss, “I Will Always Be Me” is a book created from the perspective of a person living with MND which explains what they will be going through in a thoughtful, informative way through an immersive digital experience. By integrating voice banking technology with the difficult task of explaining MND to loved ones, the project simplifies and humanizes the experience while encouraging individuals to take action earlier in their diagnosis.

To launch the project, VMLY&R has created a documentary showing a group of people with MND and their families as they experience the book for the first time.

People with MND can visit the “I Will Always Be Me” website where they can learn about the initiative and start the recording experience. Once the book opens, and as the user reads through the story to their loved ones, their voice is automatically recorded for storage. 

The story has been created so that every sound necessary to create a digital voice is embedded into the narrative naturally. By the time the reader completes the book, their digital voice can be processed. Once all pages are recorded, they can review their recording and re-record pieces as necessary. 

For those ready to get a digital and synthetic voice created, the programme allows them to share their recording with SpeakUnique to request a digital voice. People can also share their recorded version of the book with friends and family via a unique link.

The technical process involves extracting specific sounds from the recording and aligning them with pre-written text. An algorithm then extrapolates unique voice characteristics (and based on gender, age, accent, etc.) to create a synthetic voice that can be installed on any assistive technology device.

With this project, people with MND are able to start the process of voice banking earlier while the voice is intact to get a good digital voice before voice loss. The story has been designed as an easier and friendlier version of voice banking; an empowering way to maintain identity and personal expression by creating a digital replica that can be used as the disease progresses. 

Where the current process of voice banking entails reading disconnected phrases into a microphone, this story allows people living with MND a seamless, connected experience they can share with loved ones.

“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 recognizing the human experience and building around it,” explained Lama Nachman, Intel Fellow, Director of Human & AI Systems Research Lab, Intel Corporation.

For those with MND, the “I Will Always Be Me” project simplifies a process that might otherwise cause worry and stress by simplifying the experience. By bringing families together and creating a shared moment the campaign creates a compelling and genuine example of inclusive design, using tech for good. Visit the site here: https://iwillalwaysbeme.com/