Foundation hosts bi-annual Scientific Advisory Board meeting

19 January 2023

My Name'5 Doddie Foundation held its Scientific Advisory Board (SAB) recently (Monday 16 January), at Boughton House, kindly hosted by Richard Scott, Duke of Buccleuch. 

This was the first SAB meeting since the death of our founder, Doddie Weir OBE. A regular attendee at these meetings, his absence was felt. We took a moment at the beginning to recognise that, had he been in the room, he would have continued to ask difficult questions of the Foundation and the researchers and challenged us to drive forward MND research.

During a busy day of presentations and discussion sessions, we heard the latest updates on the UK MND Research Institute and the £50m targeted investment from the government. Professors Ammar Al-Chalabi and Chris McDermott, co-directors of the Institute, are continuing to work closely with government, people with MND, industry and charity funders to get the infrastructure of the Institute in place ahead of the first tranche of promised funds being delivered. Research within the MND Collaborative Partnership, to which the Foundation has contributed £1m and is the springboard for the larger funding rounds, is already underway and we look forward to bringing you updates on the progress of that research soon.

Professors Chris Shaw and Steven Gill presented their research projects looking at improving drug delivery techniques to ensure drugs can reach motor neurons effectively, and Professor Dame Pam Shaw presented on her study aiming to unravel a potential link between strenuous physical exercise and the development of MND. These projects are all supported by funds from the Foundation and we were encouraged to see thoughtful and engaging discussion around the research topics, and new ideas about how they might progress in the future.

We were updated on the progress of clinical trials that have been supported by the Foundation including MND-SMART (Dr Suvankar Pal), TRICALS (Professor Ammar Al-Chalabi) and TRUST (Professor Kevin Talbot), as well as a more general update on the international trial landscape. It is promising to see so many trials with candidate drugs in the pipeline and we hope that by encouraging discussion among researchers we can promote the opening of more clinical trials in the UK, so that everyone affected by MND will have the opportunity to take part. It was noted that the Foundation has had a huge impact in contributing to the understanding of clinical trials already taking place, where funding for the trial itself does not cover analysis of samples donated by participants. This is particularly relevant to the MIROCALS trial, for which we have funded three separate sample analysis studies, that will improve our understanding of the drug and how it works more than the clinical data would ever allow.

In addition to hearing research updates from the scientific community, this meeting was an excellent opportunity to share our own plans for our Research Strategy and hear feedback from our advisors. We had a good discussion about how the Foundation can have the most impact in the field, ensuring our funds are spent in the best places, and we are excited to be sharing our new Research Strategy with you in the spring.

We would like to thank Richard Scott for his generous hospitality, the members of our Scientific Advisory Board for their presentations, fruitful discussions and continued support of the Foundation. We extend our thanks to Dr Brian Dickie MBE (MND Association) and Dr Jane Haley MBE (MND Scotland) who also joined us, and we continue to work with them closely towards our shared vision of a world free of MND.