Keeping people living with MND at the centre of research

25 January 2024

One of the key approaches to our research strategy is involving people affected by MND at the heart of everything we do. For example, they form a vital part of our research review committee, which rigorously reviews funding applications and makes recommendations to the board of trustees about which projects to fund. Their involvement ensures we fund the research that is likely to have the biggest impact for people living with this devastating disease.

Jennie Starkey, who is living with MND, attended our recent Scientific Advisory Meeting, providing her insights into her own MND journey.

Jennie said “Being diagnosed with MND is indescribable. After the diagnosis conversation, life that remains won’t be the same as before. Many of us learn to live in the moment, making the most of simple pleasures. Some of us want to go on bucket list adventures revelling in what we can do now. We all walk our own journeys beside MND, both physically & mentally.   

The one thing that we do all strive for is hope. A small ray of light, not necessarily a cure, slowing of disease progression would be more than we have now.  That’s why patients being at the centre of MND research is vital.

Being part of what’s going on keeps us energised & tops up our little pot of hope. Of course, we are realists & understand that robust science makes final decisions. However, having fingers on the pulse of research happening now, helps us to feel in touch with what may be just round the corner.

Being involved is two-fold. Researchers remark that lived experience of MND is invaluable to them, staying in touch with patients enables laboratory-based work to hold a more tangible meaning. 

As Doddie would say ‘Let’s Crack on’ together. Beating MND is a team effort, just like on the rugby field, we all have our part to play in getting the ball over the try line.