Rob Burrow Centre for Motor Neurone Disease: New centre opens as a lasting legacy to Leeds Rhinos legend

Rob died on June 2, 2024, aged 41, after inspiring the nation with his brave battle against Motor Neurone Disease (MND) since his diagnosis in December 2019.

Born in Pontefract, he campaigned tirelessly to raise funds and awareness to support everyone impacted by the disease.

The centre – at Seacroft Hospital – has been designed with patients and families at its heart and fulfils Rob’s determination to create a place that “treats patients as people, not conditions”.

It is the first purpose-built centre dedicated entirely to MND care, research, education and holistic support, and will be a trailblazer for other centres around the country.

Dr Agam Jung, consultant neurologist at Leeds Teaching Hospitals NHS Trust and director of The Rob Burrow Centre for Motor Neurone Disease, first discussed the idea with Rob back in 2020.

Dr Jung said: “It has been five years since the germination of the idea to build this centre – a legacy of Rob’s strength, his family’s support, and the compassion of an entire community.

“I’m so grateful to so many people who have worked together to make this dream a reality.

“I was very pleased when Rob fully embraced the Leeds MND Service ethos of ‘Living in the Now’. He wanted to leave a legacy for people to be able to do so, and this has spread across the MND community.

“All of us who work in this incredible new centre will focus on providing the very best care and community for families and patients to do just that.”

The new centre has been made possible thanks to a £6.8million fundraising campaign, led by Leeds Hospitals Charity and supported heavily by Kevin Sinfield and the wider Leeds Rhinos and Leeds communities.

More than 17,000 donors have contributed so far, and the charity is continuing to fundraise as part of ongoing efforts to transform lives for people living with MND and to support their loved ones.

Patients, their families, the hospital’s clinical specialists and the wider MND community have all been involved in designing the centre. Building work has been completed less than 18 months after Rob died.

Craige Richardson, director of estates and facilities at Leeds Teaching Hospitals, said: “Just 18 months ago we placed spades in the ground here, and now this state-of-the-art centre is complete, created with Rob’s vision to make MND care better for not just every patient living with MND, but for those families and carers who support them.

“This has been an exceptional effort from so many people, and I want to extend my thanks to everyone who has played a role, from the many contractors and suppliers, to the patients and their families, to all those who fundraised, and to Rob’s family, who have been such an important part of this journey every step of the way.

“We hope that this new space will provide the hope and light that Rob envisioned, and that we will set standards of care, education, research and community that will then be replicated far and wide.”

The vision for the centre and the influence of the design involved Rob and his wife Lindsey, a physiotherapist with Leeds Teaching Hospitals, and his parents Geoff and Irene.

Esther Wakeman, CEO of Leeds Hospitals Charity, said: “When we launched the fundraising appeal with Dr Jung and the Burrow family in September 2021, we could have never imagined the outpouring of support it would receive, from right across the country. In just three years, we were able to reach the £6.8million target.

“We would like to say a special thanks to Kevin Sinfield CBE, for his heroic fundraising, going above and beyond in honour of his friendship with Rob, and he goes again this year with his latest challenge. He has inspired so many people.

“This centre has only been made possible thanks to each and every person who donated, and as well as being a lasting legacy for our late patron, Rob Burrow CBE, it is also a legacy to all of you who got behind our appeal.

“As a first of its kind in the UK, we are excited to see how this centre will have a transformative impact and make a real difference for people living with Motor Neurone Disease, their loved ones and the hard-working staff.”

Sally Hughes, director of services and partnerships at the MND Association, said: “The Rob Burrow Centre for Motor Neurone Disease marks a transformative moment in care for people with MND in Leeds and across West Yorkshire.

“This purpose-built facility, inspired by our late patron, will provide a supportive and compassionate environment for everyone affected by MND – for the person diagnosed and their family too, which is so important when facing such a life-changing disease.

“Through our partnership with Leeds Teaching Hospitals NHS Trust, we’ve committed significant funding towards health and social care professionals based at the new centre, which includes our new MND Association research nurse who will boost MND research opportunities in Leeds.

“We’re incredibly proud to see Rob’s legacy come to life in a centre that reflects the excellence he championed.”

To find out more about the Rob Burrow Centre for Motor Neurone Disease, visit www.leedshospitalscharity.org.uk/mnd