Rob Burrow Centre: New team for world-leading MND research in Yorkshire

The Rob Burrow Centre for Motor Neurone Disease (MND), funded through donations and fundraising, was launched last month by the Prince of Wales.

Now, with the dedicated centre up and running in Yorkshire, a new team steps into post. It means the centre can drive world-leading research. The hope is that it can lead to better diagnosis, treatment and care, improving the experience of those with the life-limiting condition.

Gary Jevon is centre manager, funded by Leeds Hospitals Charity.

“This is a really exciting opportunity to be involved at the beginning of something new and innovative," he said. "The vision is to make it a globally recognised, international centre of excellence for MND."

Father-of-three Rob Burrow died last year at the age of 41, having lived with MND since his 2019 diagnosis.

Fundraising for the new centre in his name was led by Leeds Hospitals Charity and Rob's consultant Dr Agam Jung, topping £6.8m. Coach Kevin Sinfield, and the entire Leeds Rhinos' community, were among those to back it, in a campaign that communities took close to heart.

And Prince William, fulfilling a quiet promise he had made to Rob before his death, was there last month to declare it formally open.

The new centre has a family room, for children to play, and a quite space for reflection. Most notably, it has staff in new posts with an incredible focus and expertise.

There are family support workers, funded by MND Association and with backing from Leeds Hospitals Charity, in recognition that it isn't just patients who are affected.

Among them, Sam Oakes, who said it's important that people with MND aren't defined by their illness.

"We take time to learn who they are, what they enjoy, what has shaped their life to date," she said.

The MND Association has also funded a new research nurse, Emelda Veraque, to help patients take part in vital trials.

And also in the field of research, Dr Amr Tageldin is a neurology registrar, still carrying out clinical work and training as a consultant while studying for a medical doctorate at the University of Leeds. His role is funded by Leeds Hospitals Charity, using AI and MRI to detect clinical features found in MND.

“The aim is to help shorten the time to diagnosis,” he said.

“The current delay in diagnosis, estimated at between nine and 18 months, puts patients and families in uncertainty and causes delay in accessing care and support they need until they get the diagnosis."

Mr Jevon, leading the team, began his career as a radiographer in the city in the 1990s. He's now come "full circle" to return after serving as a chief executive of Healthwatch Wakefield and on West Yorkshire's Integrated Care Board.

This is a proud moment for the region, he said, and for the family that Rob leaves behind.

He added: "It’s not just about how we treat MND, it’s about making it a holistic care centre, looking after families and carers, looking at the bigger picture and doing things differently."