My Name’5 Doddie Foundation’s latest meeting with Scientific Advisors

04 December 2024

Last week, our Scientific Advisors met once more for our bi-annual Scientific Advisory Meeting, gathering the UK’s leading MND experts, people directly affected by MND, and members of the Foundation and of our Board of Trustees. The meeting took place at Drumlanrig Castle in Scotland, generously hosted by Richard Scott, Duke of Buccleuch.

The meeting was kickstarted by a fundraising and research update from My Name’5 Doddie, showcasing our continued growth and commitment to respond to the needs of the MND community and accelerate our search for effective treatments. More information about some of our projects has now been released in our research strategy’s Year One Impact Report.

A packed agenda for the rest of the day sparked timely, frank discussions with topics ranging from research communication, clinical trial platform updates, EXPERTS-ALS, staffing of MND experts, the MND Research Institute, and MIROCALS, for which we expect to soon see published results.

We’re especially grateful to Dr Luke Hames-Brown, Jennie Starkey, and Stephen Darby who, based on their lived experience of MND, made powerful comments on our responsibility to produce transparent, regular, and effective research communication content. We heard the message loud and clear, and will continue to develop our research comms strategy with input from our community.

CEO Nicola Roseman said: ‘Bringing together our Scientific Advisors is always a great opportunity to hear what progress is being made. We value their leadership in the field and we demonstrate a real sense of urgency by including those who are living with MND in this meeting.  The candid discussion and updates shared are encouraging and, while we are realistic that this is a long road we're on to find a cure, we are all fully determined to make a difference to this terrible disease.’