Tuesday, 14 May 2024
Research
Earlier this week, we met with our Scientific Advisors, who represent the leading minds of MND research in the UK. Kindly hosted by the Duke of Buccleuch at Boughton House, in Northamptonshire, we updated the group on the ambitious new structure of our research programme and discussed the latest developments in the MND research landscape. We were joined by two people living with MND who shared their stories and in true Doddie-style, held the scientists to account.
Our newly appointed CEO Nicola Roseman kicked off the day with an update on our fundraising, which continues to grow, and our Director of Research, Jessica Lee, explained the evolution of our research programme. She discussed our new Discovery Network, which aims to provide a better understanding of MND and identify new potential treatment avenues to explore, as well as a clinical infrastructure award launching later in the year to help individual MND centres recruit for clinical trials.
The reality of living with MND was shared by Davy Zyw and Nicola McFarlane, who explained the experiences and challenges they face every day. Davy and Nicola had very different paths to diagnosis, with Nicola’s coming rapidly while it took much longer for Davy, involving several specialists before making it to a neurologist. Both talked about the crucial need for greater care and support after diagnosis and between consultant appointments, whether through physiotherapy, masseuse or personal assistance. Although our mission is to accelerate the development of new treatments, this reminds us that we can’t ever forget the role we can play in improving the everyday reality faced by people living with MND.
It was a privilege to attend the Scientific Advisory meeting this week. I experienced first-hand the drive, commitment and passion the Foundation and leading UK neurologists have as they work towards creating 'A World Free of MND'. The generosity and wonderful hospitality of the Duke and his support of the Foundation was incredibly moving. It was rewarding to witness the critical collaboration and challenging discussions that this event facilitated. It is only through working together with transparency and innovation that the drive for research for effective treatments will be achieved. Thank you to the Foundation for bringing everyone together, listening to patient's perspectives and your unwavering commitment to continuing Doddie's legacy.
Other topics included updates on clinical trials both in the UK and abroad, in particular MIROCALS. We learnt that the team are now on track to submit their scientific paper for publication towards the end of next month (June 2024). We welcome this news, though recognise the frustration people have felt over the past several months in waiting.
Professor Ammar Al-Chalabi also updated on progress of the UK MND Research Institute and its future plans to continue coordinating the UK MND research landscape. Finally, we spoke about the importance of opening up new potential treatment pathways through high quality discovery-based research, a new focus for the Foundation. On this topic, Professor Andrea Malaspina spoke about his Foundation-funded work exploring the potential of Neurofilament Heavy Chain as a potential target for future treatments.
Our Scientific Advisors serve a vital role for the Foundation and we’re always grateful for their time along with that of our special guests, especially Davy and Nicola. As always, huge thanks go to Richard Scott, Duke of Buccleuch, whose generous hospitality allows us to convene these meetings. We look forward to our next meeting in November.
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