Jane Haley, PhD, MND Scotland, discusses the priorities of individuals affected by motor neuron disease (MND). As part of their commitment to putting the MND community at the heart of all their work, MND Scotland prioritizes patient concerns when considering grant proposals. These interactions have uncovered that, beyond disease modification, symptom management is one of the main concerns for patients. These insights have led Dr Haley and her team to incorporate research on the management of symptoms as a crucial aspect of their funding. By involving the voices of those directly impacted, researchers can better align their efforts with the needs and desires of the MND community. This approach ensures a comprehensive and holistic approach to tackling the challenges posed by MND and fosters a greater understanding of the disease from both scientific and patient perspectives. This interview took place at The BNA 2023 International Festival of Neuroscience in Brighton, UK.
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