A NEW advisory group which aims to get more patient and public involvement in Motor Neurone Disease (NMD) research has been set up in Sheffield.
The Sheffield Motor Neurone Disorders Research Advisory Group wants to use first-hand experiences of those living and affected by MND to better understand and inform research proposals.
It also aims to recruit more people with the disease into research programmes, in order to gain more effective and reliable results which can be developed into treatments.
Scientists and clinicians working at the Royal Hallamshire Hospital and The University of Sheffield will use the input both in their work in the lab and with patients in clinics.
A key part of the group's work is also to help scientists and clinicians write lay summaries of their proposals, because presenting complex studies in easy-to-understand language is key to achieving success in funding applications.
Members of the group meet up to four times a year, and are in contact each month to review progress.
Emily Goodall, a scientist working in MND research, became involved through her job and also because her dad died from the disease.
She said: "One of the hardest things about a diagnosis of MND is why. I hope by joining the group I can explain and share some of what I have learnt."
Stan Bedford is another group member. He is caring for his wife who has lived with MND for nearly two years and is now unable to speak, stand, swallow or walk.
He said: "The hardest part of all is being unable to do anything except be supportive. There is no magic cure and no-one can tell me why the deterioration is occurring or what causes it.
"I fully support research into MND - the silent killer. I know it is now too late for my wife but hopefully it will help people in future."
Dr Christopher McDermott, senior lecturer and honorary consultant neurologist at the Hallamshire, said the support of the group was invaluable.
The group is appealing for new members. Email email@example.com or call 0114 226 1490.
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