7 July 2024 News

Today (7 July) the private funeral of rugby league legend and Motor Neurone Disease Association patron Rob Burrow CBE takes place. Rob died of motor neurone disease (MND) on 2 June 2024, four and a half years after being diagnosed.  

The service for Rob coincides with Rob Burrow Day – an annual event to honour Rob’s heroic efforts on and off the rugby field, and in tribute to the number seven shirt he wore during his rugby league career. Rob’s life will be publicly celebrated on 12 July at a civic reception, hosted by the Lord Mayor of Leeds for invited guests.  

In saying goodbye to Rob, we remember all of the incredible awareness raising he did and fundraising he inspired.

Raising awareness 

In a televised interview just days after his diagnosis, Rob shared the devastating news that he had MND. In the weeks, months and years that followed, Rob and his family selflessly shared their experiences of the disease with the world – the good days, and the bad days. In doing so, Rob educated people on the progressive nature of MND and the impact it has on lives.

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Rob with Sally Neugent, Stephen Darby and Doddie Weir

Sally Nugent meets Stephen Darby, Doddie Wier and Rob Burrow for BBC Breakfast

Rob Burrow Living With MND documentary

Rob featured in two documentaries to raise awareness of the reality of MND and its impact – both of which were shortlisted for National Television Awards.  

Seven Rob Burrow BBC podcast

Rob receives his CBE from the Prince of Wales

Campaigning

Rob accepted an invitation to become a patron of the MND Association in July 2021. A few months later in September 2021, along with his dad Geoff, he joined other people with MND to hand in a letter to 10 Downing Street urging the Government to invest £50m in funding targeted MND research under the #United2EndMND banner. This campaign was ultimately successful provided the building blocks for the new UK MND Research Institute, which is now up and running. This is supporting researchers across the country to carry out world-leading research in a co-ordinated way to accelerate the search for a cure.

Rob Outside 10 Downing Street

Rob Burrow outside 10 Downing Street

Rob and his dad Geoff Burrow outside 10 Downing Street.

Rob and Geoff Burrow smiling on the doorstep of 10 Downing Street

Rob and other campaigners outside 10 Downing Street

Rob, Stephen Darby and 2 other campaigners outside 10 Downing Street

The United 2 End MND campaigners outside Downing Street

Rob at the centre of the United 2 End MND campaign group outside Downing Street

Fundraising  

Rob’s strength and determination captured the hearts of tens of thousands of people who chose to support in his honour, completing everything from marathons to cake sales for the MND Association. Among that number is fellow MND Association patron and former teammate Kevin Sinfield CBE, who took on four epic challenges while Rob was living with MND, raising in excess of £5.5m for the MND Association. These funds have already been invested in our work across care and research. This includes vital translational research taking us towards treatments and, ultimately, a cure, improving the support and co-ordination of services for people with MND, and developing our support for children and young people who have a family member affected by the disease.

Rob and Kevin at Headingley Stadium at the end of the Extra Mile challenge

Rob pictured at Headingley Stadium with Kevin Sinfield, at the end of the Extra Mile challenge.

Rob and his team at the start of the inaugural Rob Burrow Leeds Marathon in May 2023

Rob completed the inaugural Rob Burrow Leeds Marathon in May 2023, with his team mate Kevin Sinfield CBE. His wife Lindsey also ran the event. More than 2,000 MND Association runners took part in the event, raising more than £1.5m to support our work.

Rob and Lindsey receiving their Rob Burrow MND rose which raises funds for the Association

Garden enthusiasts were able to combine their support of Rob and their love of gardening with a purchase of a Rob Burrow MND Rose. For each rose sold, £2.50 was donated to the MND Association by The Harkness Rose Company.