My Name’5 Doddie Foundation brings together leading MND experts at Scientific Advisory Meeting
31 May 2023
31 May 2023
On Monday 22nd May, we brought together leading MND experts at our bi-annual Scientific Advisory Meeting. We were kindly hosted by Richard Scott, Duke of Buccleuch, at Drumlanrig Castle in Scotland. These meetings kick-start in-depth discussions about all aspects of MND research and spark new ideas about how we can progress the MND landscape together, and this meeting was no exception!
We started the day by updating our advisors on our fundraising activity in the last six months and everyone in the room felt immensely grateful to the efforts of our incredible supporters who go to such great lengths to help us deliver on Doddie’s legacy. It was also an opportunity to discuss our new research strategy, Catalysing a Cure, which was met with great enthusiasm. We will continue to work with our advisors to ensure we implement our strategy in the most efficient way.
Professor Nigel Leigh gave an update on the results of the MIROCALS clinical trial that tested low-dose IL-2 as a treatment for MND. A pharmaceutical company based in Paris, ILTOO, has now signed a licensing agreement that gives them the commercial right to the MIROCALS data. ILTOO intends to collate the data to submit to regulatory authorities, to gain a marketing authorisation, which is a key step in enabling people living with MND to access the drug. We discussed how we can ensure the MND community is kept informed of the latest developments in MND research, particularly in relation to the licensing of new drugs, and that the information they receive is reliable. We work hard to ensure we are a trusted voice in the community and will provide new updates as soon as they are available.
We also discussed the current challenges facing MND researchers conducting drug trials, in particular how to manage expectations of people living with MND and how to manage competing trials. Having multiple trials for MND at one time was something we could only have dreamed of a decade ago, but it does come with its challenges.
Dr Tim Williams led a brilliant discussion on opportunities for earlier detection and diagnosis of MND. We recognise that it can take over a year for some people to receive an MND diagnosis, but that treatments are likely to be more effective if given earlier in the disease course. We are keen to explore ways that the Foundation can have an impact in this area. We discussed the pathway from GP to neurologist and the potential opportunities for improvement, and have come away with lots of ideas for our next steps. We were especially grateful to Davy Zyw, who is living with MND and joined us for the meeting, for sharing his own experience of diagnosis and bringing home the reality that so many people living with MND experience.
In the afternoon, we heard from Professor Orla Hardiman about the Precision ALS programme, of which she is the Director. The programme brings together scientists, engineers, technologists, and industry partners to develop novel approaches to drug development. Specifically, the programme focuses on ensuring the right patient receives the right dose of the right drug at the right time; a more tailored approach to treatment that aims to improve outcomes for all.
Professor Martin Turner, University of Oxford and Scientific Advisor to the Foundation, said “This meeting is a unique opportunity to get MND-focused neurologists together in one room to discuss and debate the rapid developments that are happening in lab research and drug trials. It serves an extremely important function in benchmarking research strategy and care in a setting where opinions can be freely exchanged. We always leave with a renewed sense of purpose and optimism.”
Davy Zyw said “It was a fascinating day, looking under the bonnet of neuroscience research. I have the highest regard for everyone in the room for pushing us all closer to finding a cure. On behalf of the MND patient community, it feels like infuriatingly slow progress, yet I now know many of the challenges we face are out of the control of the Foundation and the scientists. But there is much to be optimistic about and I hope that all the MND community live long enough to see the potential benefit. In my 5 years living with the condition, we have never had so many options; we are moving forward, but we need to run quicker, and it’s days like today that quicken our pace. Let’s do it for Doddie.”
We extend our thanks to our advisors for their continued support of the Foundation, and to the Duke of Buccleuch, for hosting us all. We will host our next meeting in November and we look forward to updating you on what is discussed then.