It is with great sadness that the MND Association has learnt of the death of our patron Rob Burrow CBE, four and half years after his diagnosis of motor neurone disease.
Our thoughts today are with Rob’s wife Lindsey, children Macy, Maya and Jackson, family and friends and the rugby community.
Rob, who played at number 7 for Leeds Rhinos, lived with this brutal disease in the public eye after choosing to announce his diagnosis shortly before Christmas 2019. He used every opportunity to raise awareness of the disease, speaking publicly, undertaking media interviews and opening his life up in two moving BBC documentaries My Year With MND and Rob Burrow: Living With MND.
He remained a consistent and passionate advocate for people with MND – he became the first person to use a communications aid to read a bedtime story on CBeebies. And he joined the United To End MND coalition which successfully campaigned for a £50million Government investment in targeted MND research.
In doing so much, he inspired support from so many. On the weekend of the Challenge Cup Final in October 2020, fans and supporters donated an incredible £70,000 to the MND Association. Just two months later, Rob’s former captain Kevin Sinfield CBE took on the first of four incredible challenges raising more than £7 million for MND charities, including the MND Association. Rob and Kev’s friendship made headline news around the world. Thousands of well-wishers, not just in rugby’s heartland, but across the country donated, took on fundraising challenges and pledged support in tribute to Rob’s bravery.
Rob’s contribution to rugby league and awareness of MND were recognised in the 2021 New Year’s Honours List when he was made an MBE and that same year Rob accepted the role of patron of the MND Association. Rob was subsequently awarded a CBE in the 2024 New Year’s Honours list.
It is testament to the strength of feeling people have for Rob that the support in his name has never wavered.
The MND Association is incredibly grateful to Rob and his family for helping to raise awareness of MND, and funds for the Association, by sharing the details of their journey and by inspiring so many people both within the MND community and the wider public.