Rob Burrow: New centre inspired by Leeds Rhinos legend provides hope for MND sufferers

Whilst the team did their best to support patients ‘live in the now’, it felt like we had little to offer in terms of new treatments or hope of a cure.

In January 2020 someone came into my clinic who would change all of that.

The first time I met Rob Burrow, I knew he was keen to share his story as he had been inspired by Doddy Weir, but I never imagined the journey we would go on together and the community we would go on to build.

In March 2020, Rob told me that I had seen him play when he was starting out on his Rugby career. That surreal conversation made me reflect on my purpose in life and what more I could do to make a difference.

I’d always known that our facilities for MND patients needed improvement; an ageing ward, doors not wide enough for wheelchairs and no privacy for families having difficult conversations.

With support from Rob, the Burrow family, Leeds Teaching Hospitals and the Leeds Hospitals Charity we set about building the most beautiful safe haven – The Rob Burrow Centre for Motor Neurone Disease.

Within two years, Leeds Hospitals Charity launched an appeal, with an eyewatering target to reach £6.8m.

Straight away, people were determined to help. Kevin Sinfield pledging a huge chunk of fundraising from his next running challenge, Rob’s sisters Jo and Claire organising the ‘Strictly Ball’ was just the start.

There were many small gestures of kindness too. People in the street folding £5 notes into buckets, training for months for the Leeds marathon, schoolchildren running around football pitches and community raffles and quizzes galore

By the time the appeal total was reached in December 2024, over 17,000 people, mostly from Yorkshire, had donated. Companies had given their time and resources, providing items for the centre for free.

More importantly, the campaign for the new centre gave my patients a voice, it gave them hope that people cared and that things would be better for them and their families. New patients now often say they have ‘Rob Burrow’s Disease’.

Thanks to Rob, it’s a condition that no longer lives in the shadows. In just a few months’ time, our new Centre will open at Seacroft Hospital. A beautiful new building, bathed in light, with a restorative garden and space for families to meet and get support.

The Centre will also grow to have holistic care and wellbeing for families, world class research and education.

This project shows the best of Yorkshire spirit, a new way of thinking for healthcare in our country, a model of real partnership working between the NHS, charity and commercial sector.

It is a shining example of what is achievable when people come together to make a difference and make dreams a reality.

Dr Agam Jung, Director of the Rob Burrow Centre for MND