Scientists need to better understand how MND affects people living with the disease so that research can be translated into useful treatments as effectively as possible.
Supported by the MND Association and MND Scotland, the UK MND research institute set up a new pre-fellowship buddy scheme that will help a new generation of researchers develop their skills and spark an interest in MND research early in their careers, encouraging them to become the next leaders in MND research.
Each of our pre-fellows have been partnered with a ‘buddy’ who is living with MND, so they can better understand the unmet needs of people living with the disease. Let’s meet some of our pairs and hear what this new scheme means to them.
Alannah Mole (University of Sheffield and funded by the MND Association) and David Setters
David – “The buddy scheme is a very important element of the UK MND Research Institute programme. Speaking with Alannah has helped me understand more about how core neuroscience feeds into translational research and clinical trials. At the same time, I have learned much about the research environment she works in and some of the barriers that stand in the way of progress, so I can work with fellow patients to try to remove them. It’s also a great opportunity for Alannah to gain a greater understanding of what patients need.”
Alannah – “After completing my PhD, I moved to the University of Sheffield where I utilise lab models and electrophysiology to pull apart and better understand where and when things go wrong in motor neurons during disease. I joined the Buddy Scheme to connect with patients on a personal level, hear about their experiences and develop skills in communicating my work in an accessible way. This scheme is invaluable; after every meeting, I am inspired and motivated to continue my work and contribute towards gaining a better understanding of MND and finding effective therapies.”
Beatrix Cardus (University of Oxford) and Nicola McFarlane
Nicola – “Being diagnosed with MND is very difficult, and the current lack of treatment or cure adds to the sense of hopelessness that comes with this disease. Buddying with researchers is crucial to me as I can see first-hand the passion and drive to better understand MND and find new treatments. As Doddie Weir said, this is not an untreatable disease, it is just underfunded and under-researched. This has changed so much over the last few years, and this gives me confidence that one day we will live in a world free of MND.”
Beatrix –“I was motivated to join MND research after meeting people living with the disease whilst working on a neurology ward. I saw the profound impact the disease has on them and their families. The MND RI Buddy Scheme allows me to connect with people living with MND and hear about the issues that matter most to them. This provides essential context for my research and ensures they are informed about our progress. I find their perspectives both humbling and educational, reinforcing the importance of keeping them at the heart of our work.”
Andrew Douglas (University of Oxford) and Jennie Starkey
Jennie – “When I was diagnosed with MND, it was a devastating blow for us all, I didn’t know what the future held and how long I had left with the people I loved. The only thing I was certain of was the lack of a significantly effective treatment. Thankfully, I have progressed slowly, and I am still independent. I want to give as much support as I can to the research community by providing them with a patient perspective. I hope that all this work will eventually lead to new life-extending treatments, and a cure will be the stuff dreams are made of.”
Andrew – “As a clinical geneticist, I see relatives with family histories of MND and related conditions. Where a known genetic cause has been identified, we offer predictive genetic testing following adequate genetic counselling. However, not everyone who inherits a faulty copy of an MND-linked gene goes on to develop the condition. My work is looking to better understand why this happens. I hope to identify modifying genetic factors that can help give unaffected relatives better estimates of their MND risk and hope to uncover new genetic targets to help prevent the onset of MND.”
Heather Marriott (King’s College London and funded by the MND Association) and Lee Millard
Lee – “One of our young researchers is going to make a breakthrough in the years to come, and I am thrilled to work with such enthusiastic and talented people. Heather’s work is fascinating as she is looking at the genetic diversity and fingerprints of patients. As a person fortunate to have a relatively slow form of MND I have seen many years of research progress, patients, and different disease progressions. We have open, free-form discussions, and I hope I can help maintain her enthusiasm and provide valuable input that might aid her research. You never know where it might lead!”
Heather – “My work analyses large amounts of data from people with MND using statistical and computational techniques. The aim is to place people into groups based on genetic changes, to see if they display differences in onset and progression. This aspect of the scheme is vital for researchers to connect with people affected by MND and they will impact this project in a meaningful way. At the end of this pre-fellowship, I want to become an independent researcher and continue to use the experiences of people with MND to shape my research. I hope this will improve outcomes and access to personalised treatments.”
Thank you to both the MND Association and MND Scotland for supporting this scheme.
To find out more about our research and new, visit here, and you can read more about the scheme, click here.
