Thursday, 14 December 2023
Research
We recently brought together 12 of the leading minds in MND research in the UK, at Boughton House, Kettering, to discuss the latest developments in the research landscape and share our latest plans for driving forward our research strategy. The meeting was hosted almost a year to the date since our founder, Doddie Weir OBE, died, six years after being diagnosed with MND. We were pleased to be joined at this meeting by Kathy Weir, Doddie’s wife and Trustee of the Foundation, and by two people living with MND and their partners, who shared their experiences of the disease and reminded us of how far we still have to go.
Jennie Starkey, who is living with MND, shared her story of her MND diagnosis, opening a discussion about the opportunities there are to speed up the diagnostic process. We hear too often that the pathway to an MND diagnosis is long and inefficient, with many people receiving their diagnosis more than 12 months after onset of their first symptoms. Within the Foundation’s strategic priority “Improving translation” lies a focus on accelerating MND diagnosis and we are now exploring how we can make a real difference in this space. You can read more about this strategic priority here.
In the afternoon, Professor Dame Pamela Shaw from the Sheffield Institute of Translational Neuroscience (SITraN) introduced her work in translating lab science into drug development programmes. Jessica Lee, the Foundation’s Director of Research followed by introducing our intent to catalyse more success stories like this, by introducing a new research programme to identify and validate therapeutic targets, which could open up new treatment avenues for this devastating disease. We discussed ideas about how to approach this initiative and we are excited to bring you more information when we kick off in 2024.
Other topics that were discussed include updates on clinical trials both in the UK and abroad, the drug approval process, genetic testing in MND and the work of the newly launched UK MND Research Institute. We’re so grateful to have had the opportunity to meet with our advisors and people affected by MND, to hear their thoughts on all these topics and to have come away with plenty of ideas for how we can make the most impact. Our thanks, as always, to Richard Scott, Duke of Buccleuch, whose generous hospitality allows us to convene these meetings.
It was a privilege to be included in the recent Doddie Foundation Advisory Meeting last month. A fantastic opportunity to share opinions and take part in pro-active discussions from a patient’s perspective.
The meeting was attended by Professor Ammar Al-Chalabi, Professor Orla Hardiman, Professor Chris McDermott, Judy Newton, Professor Suvankar Pal, Professor Rickie Patani, Professor Dame Pamela Shaw, Professor Chris Shaw, Professor Kevin Talbot, Professor Martin Turner, Dr Tim Williams, Professor Carolyn Young, Dr Giacomo Bertuzzi, Dr Olivia Bird, Jill Douglas, Jessica Lee, Sean McGrath, Claire Whatman, Lee & Jean Millard, Jennie Starkey, Mark Wallis, Kathy Weir, Dr Annabel Howell, Kenny Logan, Emma Hinshelwood, Lord Charles Montagu Douglas Scott and Richard Scott, Duke of Buccleuch.
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