Jane Haley, PhD, MND Scotland, highlights the major unmet needs of individuals living with motor neuron disease (MND). Given the devastating nature of MND progression, patients require urgent and comprehensive support throughout their journey. Existing support structures often fall short in providing adequate services due to the rapid progression seen in MND. Housing adaptations, for example, can quickly become crucial for individuals who require wheelchair accessibility. However, the current processes at the local government level are unable to keep up with the timescale of the disease. This highlights the critical need to streamline and expedite the provision of support services to meet the needs of individuals with MND. In terms of research, Dr Haley describes the major unmet need for effective treatments. Currently, there is only one licensed treatment in the UK for MND, known as riluzole, which only extends life expectancy by 2-3 months. This interview took place at The BNA 2023 International Festival of Neuroscience in Brighton, UK.
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