A portrait of a voice - now restored through AI

Yvonne Johnson has been living with motor neuron disease (MND) for almost six years. It has taken much of her mobility, her strength, and her ability to work – but the most painful loss has been her voice.

Yvonne was always the one leading the conversation, quick with a joke and full of energy. When her speech began to fade, she felt present but not always heard. Losing her voice felt like losing part of who she was.

But now, Yvonne has regained the ability to communicate in her own voice, thanks to innovative AI-driven technology developed by a company called ElevenLabs. Using old voice notes and answering machine recordings, the system digitally recreates how she once sounded.

Recently Yvonne travelled to ElevenLab’s first-ever summit in San Francisco to speak about how this technology works for people living with MND, and how it can help restore something so personal.

“It was an honour and a pleasure to be asked to be a guest speaker,” she said, and went on to explain how the system works: “It’s like when you send a text – that sort of way. But instead of it just being words on a screen, people are hearing my voice again. This is my voice – but it’s being spoken through technology. Being able to communicate again changes everything.”

A proud and bubbly Londoner with Barbadian roots, Yvonne worked in customer services for more than 20 years before retraining in health and social care. Known for her warmth and humour, she was always on the move – cycling everywhere, keeping her family and friends close, and rarely without a smile.

But in 2020, she and her friends noticed her speech starting to falter. Months of tests and misdiagnoses followed before she was told in 2021 that she had MND.

I was in the hospital alone when the doctor told me,” Yvonne recounted. “I was in shock. I asked if I could record what she was saying. I needed proof that it was real."

Later that night, the reality of the diagnosis hit.

“I woke up at 2am and just cried. I was angry. I asked God, ‘Why me?’ I didn’t want to tell my family – I felt like I had to protect them.”

Eventually, she sat down with her husband of 25 years, Orville, a mental health support worker.

“I said, ‘I have MND.’ He didn’t flinch. He just said, ‘I’m going to look after you. We have our faith, and your disease does not define you – you are still Yvonne.’ That moment meant everything.”

MND affects the brain and nerves, causing muscles to waste away, and around 80% of people with MND lose their ability to speak.

“For me, that’s been the hardest thing,” Yvonne said. “Not being able to sound like myself. Your voice is such a big part of your identity. When that’s taken away, it feels like you’re fading.”

Before Yvonne was able to communicate again in her own voice, her personality was captured in a striking portrait by renowned artist Sara Pope – best known for becoming the first woman in more than 70 years to have a work hung in the Vatican. The painting is part of Sara’s Portrait of a Voice project, which aims to raise awareness of the impact of MND.

Sara, known for her high-gloss, hyper-real lip portraits exploring identity and expression through the mouth, first encountered Yvonne through the ‘I’ll Always Be Me’ campaign – a Rolls-Royce-backed project using technology to help people with MND preserve their voices. The campaign was documented in a short film which highlighted the reality of living with MND.

Struck by the impact of the disease, Sara was inspired to launch the Portrait of a Voice project and knew immediately who the subject should be.

“I didn’t know much about MND before, but I was shocked by the devastation it causes,” said Sara. “When I saw Yvonne in the documentary, I knew she was the one. Her smile arrives before she does. There's such light in her.”

The two women met for a photoshoot in London early last year, the first step in Sara’s creative process, where she captures the emotion and personality that will later shape her lip portrait paintings.

“I was so nervous,” Yvonne said, “but Sara made me feel so special. She really saw me.”

Sara spent months painting the portrait in her Brighton studio, working layer by layer to capture Yvonne’s expression – her essence and her warmth.

“I wasn’t painting Yvonne’s illness,” Sara explained. “I was painting her resilience, determination and hope.”

Seeing the finished portrait had a profound effect on Yvonne.

“I saw my personality in it,” she remarked. “It’s not just about me – it's about all of us with MND. Even when your voice fails, you still matter. You're still heard.”

Watch below to hear more from Yvonne and Sara, as they met to start working on the Portrait of a Voice project.

The portrait was auctioned at a charity dinner and dance in Aberdeen last year, in support of us. Yvonne and Orville were in attendance, and the portrait sold for £15,500.

Nicola Roseman, our CEO, said the Portrait of a Voice project highlights the human impact of MND.

“You only need to spend five minutes with Yvonne to see how perfectly this portrait captures her,” she went on. “MND takes so much – which is why we are determined to fund research that brings hope.”

“MND isn’t incurable,” Yvonne stated. “It’s underfunded. That’s what needs to change.”

To find out more about how you can support us as we continue to fund vital MND research, click here.