Rob Burrow CBE was just 37 years old when he was diagnosed with motor neurone disease (MND) in December 2019.

Announcing his diagnosis, Rob – a legend in the world of rugby league - spoke of his positivity and determination to fight the disease, with the love and support of his wife Lindsey, parents Geoff and Irene and his three young children Macy, Maya and Jackson. 

In the four years until his death in June 2024, Rob did that – and so much more – tirelessly raising awareness of MND. As our patron, Rob inspired individuals, families, clubs and societies, companies and trusts to support the work of the Association, by taking on challenges, fundraising and donating.

A giant in the world of rugby league 

In the city of Leeds, Rob Burrow has been, and always will be, a hero.

Having started playing rugby at a very early age, Rob played for the Leeds Rhinos for his entire sporting career, making 492 appearances over the course of 16 years.

During that time, he was an integral part of the team which won eight Super League Grand Finals. He was capped by England 15 times and won the Challenge Cup in 2014 and 2015 before retiring in 2017.

Away from the pitch, Rob was a devoted family man married to his childhood sweetheart, Lindsey, and with three beautiful children, Macy, Maya and Jackson. 

On December 19, 2019, Rob announced he had been diagnosed with MND having first noticed problems with his speech during an awards ceremony.

Within weeks, Rob had been diagnosed with MND.

During an interview at the time Rob explained: “When I was diagnosed, I think I took it better than Lyns. I think I was just happy for it to be me and not anyone else in my family."  

Rob Burrow CBE: MND campaigner and fundraiser

In the months following his diagnosis, Rob and his family made the courageous decision to share their story, helping to raise awareness of MND among audiences of millions.

Alongside fellow sportsmen, Doddie Weir MBE and Stephen Darby who had both been diagnosed with MND, Rob appeared on BBC Breakfast, talking openly about the impact of the disease and the challenges he now faced. 

Very quickly, Rob’s story captured the heart of the nation, inspiring his friend and former teammate, Kevin Sinfield to undertake his first 7 in 7 Challenge to raise money for the MND community in 2020.

In the same year, a moving documentary, Rob Burrow: My Year With MND was broadcast on the BBC, opening a window on life with MND for the first time. In 2022, a second documentary, Living With MND, was aired on primetime television, documenting day-to-day life for people living with and affected by MND.

In 2023, the city of Leeds honoured Rob by hosting the first Rob Burrow Leeds Marathon. In 2024 the race raised £500,000 to support the Association’s work.  

Rob’s courage, together with the support and love of his family and his teammates, touched people across the world, galvanising them to take action. Whether it was by taking part in a fundraising event or by choosing to give their time through volunteering, the wave of support for the MND community, and the outpouring of love for Rob, changed everything.

In recognition of his immense achievements, Rob was awarded an MBE for services to rugby league and the motor neurone disease community in 2021. He was further honoured with a CBE in the 2024 New Year Honours in recognition of his services to motor neurone disease awareness.

In 2021, Rob accepted an invitation to become a patron of the MND Association, lending his support and experience to our work.  

Understanding Rob’s impact and his legacy

It’s impossible to overestimate Rob’s achievements and just how much he did to support the Association and the wider MND community.

Thanks to Rob, people with MND have told us they no longer have to explain what MND is to strangers, people understand and have seen the impact on families and friends. They have been inspired to fundraise like never before, going to extraordinary lengths to bring new awareness to this devastating disease.

The money raised through Kevin Sinfield’s 7 in 7 Challenges has funded vital translational research into genetic therapies aimed at slowing the progression of MND, as well as supporting the Association’s network of 23 care centres and networks.

Elsewhere, children whose lives have been turned upside down by MND are getting the information and support they need through our work with Children, Young People and Families.

But perhaps most importantly of all, Rob’s legacy of love and hope continues to inspire so many people driving us towards our vision of a world free from MND.

In Rob’s own words, 

In a world full of adversity we must dare to dream.

Rob Burrow, CBE


Learn more about the ways in which you can get involved in the work of the Association or support us by making a donation.