The newly formed group met for the first time to share their experiences and priorities. Discussions focused on improving the diagnosis, treatment, and care for individuals living with Motor Neurone Disease (MND) throughout their journeys. Dr Agam Jung, Director of The Rob Burrow Centre for MND, highlighted the importance of patient input, stating, “It was wonderful to see so many patients and their families come together to help our researchers understand what’s really important to them.” He added that early diagnosis and treatment, alongside the hope for a cure, are key concerns for families, and that the centre's research can make a significant difference.
Amanda Attack, who has MND, attended with her husband Paul. Paul emphasised their commitment to the centre, saying, “We’ve always tried to get involved with the centre as much as we can. We helped raise money for the building and we want to be part of it as it grows. The teams here need to hear from us to get the essential information from a patient and carer perspective to build up a picture and be able to move research forwards.” Jean Wilson, recently diagnosed with MND, joined with her husband Maurice, who expressed a need to learn quickly to support his wife.
“"The Rob Burrow Centre for MND has a bold ambition to become a world-leading centre for MND research, and the voices of patients and families are central to that journey. By funding pioneering research, we’re working together towards earlier diagnosis, better treatments, and improved quality of life for people living with the condition."
The PPIE group is scheduled to meet biannually, with additional meetings as needed. The centre is actively pursuing several research projects, including the MND-SMART trial testing drug effectiveness, and a project using Magnetic Resonance Fingerprinting to detect upper motor neurone signals. Another initiative employs artificial intelligence to analyse patient videos for early MND detection, both funded by Leeds Hospitals Charity. By 2031, The Rob Burrow Centre for MND aims for global recognition in translational MND research, focusing on meaningful improvements in diagnosis, care, and treatment.
