Summer 2025


A new approach to nursing and MND


Imagine a future where everyone diagnosed with MND has the chance to take part in research projects that could improve their lives, or even lead to a cure. It’s a future where MND care and research are intertwined – accelerating breakthroughs for everyone.


We’re investing in that future in the form of our Research Nurse Network. And Kate Hartley, our new Lead Research Nurse, is at the forefront of the revolution. We sat down with her to find out more.


Welcome to the team, Kate. How did you become involved in MND nursing?


I spent 18 years working with people with multiple sclerosis (MS). Four of those years were in the community as part of an integrated health and social care team. During that time, I attended several MND clinics and noticed strong similarities with MS and MND, both in symptoms and symptom management. I saw this role


as a chance to move things forward in MND research and patient care.


The Research Nurse Network is a bold new step forward for MND care and research. What’s its main goal?


We aim to embed a dedicated research nurse within every MND care centre and network. The goal is to ensure every person with MND is offered the chance to participate in research, if they’re eligible. It’s my job to build the network and recruit the nurses we need.


How will the network benefit MND research?


It will improve cross-collaboration between people with MND and the researchers trying to help them, ultimately increasing the number of people researchers might have to work with. It could even widen the range of projects the MND Association could fund in future.


How do you hope it will benefit people living with MND too?


A new MND diagnosis is overwhelming. When you’re told you have MND, usually you haven't got the time or headspace to discuss research and participating in trials. You need someone – when the time is right – to say ‘look, we’ve got all of these trials, are you interested in finding out more?’. Because at the moment, no one routinely says that. Participating in research also creates a greater sense of connection with your care team.


What’s your message to the MND Association supporters who are making this work possible?


Quite simply, thank you. I believe that it is fundamental that research is embedded in the clinical care setting. Because ultimately, this is about giving power back to those affected by MND to make decisions for themselves. And that’s what we’re about to start doing.


You make incredible projects like the Research Nurse Network possible. Will you help do even more for people with MND? Click here to donate now.


Page 1  |  Page 2  |  Page 3  |  Page 4