As part of my volunteering with AbilityNet, I recently attended a training session on motor neurone disease (MND) — and it quietly shifted how I think about what technology is actually for.
What is MND?
MND affects nerves in the brain and spinal cord called motor neurones — the nerve cells that tell your muscles what to do. It's a rare but progressive condition. There is no cure, and it's usually life-shortening.
Around 5,000 people in the UK are living with MND at any one time. Six people are diagnosed every single day.
Voice banking
Voice banking was something I hadn't encountered before this session. It allows a person to record their own voice or create personalised messages for use with speech-generating devices — and the MND Association recommends starting early, even before speech is significantly affected.
The goal is to preserve something that can't be replaced once it's gone: the sound of you.
Research shows that "preserving identity" is the overarching motivation for people who choose to voice bank. Yet only around 12% of people diagnosed with MND in the UK actually go through with it — because the process has historically been too long, too hard, and too clinical.
That gap between what's available and what people can actually access is exactly where technology and human support need to meet.
Good technology serves the people
You don't need to be in tech to show up for this. Anyone can volunteer, learn, and help bridge that gap.
If you want to understand more about what living with MND actually looks like, this is a good place to start:
Further reading: