15 February 2022 Care
A first-of-its-kind e-book which banks people’s voices as they read the story aloud has been launched today for people living with motor neurone disease (MND).
“I Will Always Be Me” 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 short story, authored by New York Times bestseller, Jill Twiss, takes less than half an hour to read and is designed to be a shared experience for family and friends to be part of.
Upon 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 MND Association will provide funding for people with MND living in England, Wales and Northern Ireland to take part, thanks to donations from Dell Technologies and Intel. This free service also extends to people living with MND in Scotland, with funding provided by MND Scotland.
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. 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.”
I Will Always Be Me is dedicated to the memory of Brian Moss, who died of MND in 2014. His son Stuart, Head of IT Innovation at Rolls Royce, was compelled to help better the lives of other people affected by MND and so, together with the MND Association, created the NextGen Think Tank in 2019.
Companies Dell Technologies and Intel were first to join this effort and other organisations soon followed. Over the past year, these companies came together to develop I Will Always Be Me to provide an alternative voice banking option. See the story behind the book in our exclusive video.
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. I Will Always Be Me is a brilliant example of how bringing together the Think Tank’s expertise and resources can improve the quality of life for people with MND and we can’t wait to find other ways to make a real difference.”