Health Secretary Yvette Cooper has pledged to accelerate support for individuals living with motor neurone disease (MND) during a visit to the Rob Burrow Centre for Motor Neurone Disease in Leeds. The centre is named after the late rugby league star Rob Burrow, who passed away in 2024 at age 41 after more than four years of battling the terminal condition.
In her visit, Cooper emphasized the importance of improved care and timely assistance for MND patients. She also acknowledged the significant contributions of Burrow and fellow rugby player Sir Kevin Sinfield in raising public awareness and generating funding for research. Their efforts, along with those of Burrow’s family, have helped bring greater attention to the disease.
Professor Dame Pamela Shaw, a leading MND researcher, highlighted the role of high-profile rugby players in increasing awareness of the disease, which was previously better known through the case of astrophysicist Stephen Hawking. Shaw credited Burrow, Doddie Weir—another rugby figure who died from MND in 2022 at age 52—and Sinfield for courageously displaying the effects of the disease and helping raise millions for research.
Dame Pamela Shaw, who directs the Sheffield Institute for Translational Neuroscience, spoke about her lifelong dedication to understanding MND and advancing treatment options. The institute, which employs over 300 clinicians and researchers, was established with £12 million in donations and was opened by Queen Elizabeth II in 2010. Its capacity is set to double with a new building scheduled to open in October.
Shaw noted that while MND progression varies widely—citing Hawking’s 50-year battle and the more rapid decline observed in others—it remains a devastating diagnosis with limited treatment options until recently. Among her key contributions are the introduction of riluzole, currently the only drug proven to extend survival in some patients, and the identification of non-invasive ventilation as a way to improve quality of life and longevity.
Despite the challenges, Shaw expressed cautious optimism about future therapies and said the ongoing need for progress motivates her continued work. “That’s why I can’t retire yet,” she said.
Tanya Curry, chief executive of the Motor Neurone Disease Association, welcomed Cooper’s announcement as a positive step toward addressing the delays and complexities that often hinder effective care for MND patients. Curry called for the government’s expressed commitment to be translated into concrete changes within health and social care systems to better meet the urgent needs of those affected by the rapidly progressing disease.