Our MND stories

I have been researching MND for 15 years. Sometimes it strikes me that the more I learn, the less I think I know. I have had the privilege of working with many people affected by MND, and I am always inspired by their bravery, engagement and selflessness. They are inspirational and provide me with motivation to continue to learn, understand and try to beat MND.

Scott Allen

Lecturer, Neuroscience-SMPH

Inspired by having completed the Sheffield Half marathon and 10K back in 2022 fundraising for genetic research, this year I am taking on The Big Walk. Combating these awful degenerative diseases with research is so important to me. I lost my dad in 2016 to CJD and the rapid deterioration and dreadful onset of these conditions shouldn't be endured by others.

Sara Bacon

Centre Manager, NTDC/USO

Over the past three years, staff, students, alumni and the general public, including people directly affected by MND, have raised over £180,000 for University MND research. One of my major projects is to plan and deliver The Big Walk. It is both saddening and humbling to hear that over 100 of the 450 participants have a personal or professional connection to the cause.

Sarah Barnes

Fundraising Officer, CAR

My friend Mark died of MND in his early 30s. He left a wife, daughter and many friends behind. Since then I have completed the Lyke Wake Walk (40 miles in one day) to raise money for the MND Association and I am also doing The Big Walk. My friend’s dad is currently suffering from MND and Rob Burrow’s death reinforces the urgency of MND research.

Jayne Carrick

Post Doc RA, Politics & IR

My Dad was diagnosed with MND in November 2016 and passed away less than five months later. The speed in the decline of his health was shocking and awful to witness. We felt so helpless. It was very difficult to come to terms with his suffering from an illness that seemed so random and utterly, utterly unfair. I truly hope that research can find some way of putting a stop to this.

Keith Dean

Research Project Manager, EEE

My dad passed away in the early 90s. This was a time when little was known about MND. From his diagnosis to when he passed away, it was only six months. I decided then to run the Sheffield Half Marathon to raise funds for MND. Since then, I have carried on running, raising hundreds of pounds for MND research. My work colleagues have played a large part in this. 

Peter Ellis

Security Controller, Security Services

I'd like to remember my father. He was a Dakota pilot who survived Pegasus Bridge and Arnhem and had a 35-year career as a commercial pilot, only to succumb to this miserable disease in his 77th year, 1997. This was the year my family and I moved to Sheffield with obviously mixed emotions. I am fiercely proud to be writing this in his memory on the 80th anniversary of D-Day, and desperately sad that we still have no cure for MND.

Andrew Furley

Professor of Developmental Neuroscience, Biosciences

My Grandma died from MND in 2010. Professor Dame Pamela Shaw was her consultant – she came and spoke to us at the Royal Hallamshire about a clinical trial and together we signed up for it. Grandma was so keen to help find ways to stop the disease for other people. Sadly she didn't live long enough to participate but I'm always proud to know that groundbreaking MND research is taking place right here in Sheffield.

Anne Greaves

Research Administrator, Medicine and Population Health

It is hard, until you see for yourself, to credit just what MND does to people. My mother remarried for a third time quite late in life. Bob was a lovely gentle chap and they were very happy. He was diagnosed with MND in the 1980s. Then in the early 2000s, MND entered my life again. A young colleague, Dr David Laws, was struck with the disease and died in 2008. He was only in his 30s and a fine lecturer and promising researcher.

Tony O'Hagan

Professor Emeritus

I am a neuropathologist – a doctor and scientist trained to characterise diseased brain. I specialise in MND and run the Sheffield Brain Tissue Bank. I analyse, study and archive brain and spinal cord kindly donated by people, with and without MND. Samples are then given to scientists. Together we work to improve our understanding of MND so that we can develop better treatments for the disease.

Robin Highley

Senior Clinical Lecturer in Neuropathology, SITraN

I have been caring for people with MND and their families for over 15 years. What has always struck me is the bravery, care and kindness shown by people facing such a devastating disease. I develop digital services to improve access to high quality care and research for everyone living with MND, regardless of where they live. With an NIHR grant, I’ll also be running a UK trial aiming to improve how we help people using breathing support.

Esther Hobson

Senior Clinical Lecturer and Honorary Consultant Neurologist, Neuroscience

The loss of the ability to speak, and/or to operate a computer or technology, is almost always an inevitable part of MND. Our service works with hundreds of people throughout Yorkshire and Humber to support them with communication and control. In my role at the University I also research into how we can improve assistive technology support. I’m always humbled and inspired by the people that I work with who are living with MND.

Dr Simon Judge

Honorary Research Fellow (SCHARR) and Service Lead of Barnsley Hospital Assistive Technology Team

I first learnt about MND when I secured a post-doc with Prof Pamela Shaw to look for mutations in the SOD1 gene, the first identified MND gene. Mutations in SOD1 are the second most common cause of MND, and recently an effective genetic therapy for individuals with SOD1 mutations has been demonstrated. This approach is now being applied to other genetic causes.

Professor Janine Kirby

Medicine and Population Health

My research focuses on developing healthcare services for people with MND, including trying to lower diagnosis times, and improving communication between patients, their carers, and healthcare professionals. I’m also involved in developing an online platform to help people with MND to participate in research from the comfort of their own homes.

Liam Knox

Research Fellow, Neuroscience

I first heard of MND and SITraN when we interviewed Professor Dame Pam Shaw for a research magazine I was editing. Tragically, eight years later my mum was diagnosed with MND. Knowing the University’s research efforts does give me some comfort, and I hope it prevents others from experiencing the rapid decline my Mum faced before passing away. Thank you to everyone involved in MND research and fundraising.

Rachel Latham

Communications Manager, Research, Partnerships and Innovation

I am passionate about improving psychological care for people living with this cruel disease, and through my clinical experience have seen the difference psychology can make. I am currently leading a study funded by the MND Association looking at how to improve delivery of psychological care in MND across the UK, so that everyone living with and affected by MND can access the support they need, when they need it.  

Emily Mayberry

Senior Clinical Psychologist and Honorary Senior Lecturer, SITraN

My research involves understanding the information and support needs of people with MND considering having a genetic test. We are developing resources to help people make informed decisions and to support relatives to navigate the decision of whether or not to have a predictive genetic test. New treatments only work for specific genetic types of MND, and facilitating genetic testing for MND is key to accessing these treatments.

Alisdair McNeill

Senior Clinical Lecturer, Neuroscience

I have met some terrific people connected to this terrible disease. People like Gemma Middleton. Gemma was a shining star and really believed in the work happening in Sheffield. She left a gift in her Will and raised an incredible amount to support our research. Gemma and her family are a real inspiration to me and I hope to raise as much as I can through The Big Walk to play my part in the fight against MND.

David Meadows

Senior Philanthropy Manager - Legacies, CAR

Watching Rob Burrow’s journey has brought back many memories for me after my husband was diagnosed with this ‘not so well known’ disease in 2002. Tom left us on 1 June 2004. We watched a healthy man waste away month by month, losing his muscle function, speech and ability to swallow. I cannot say enough about the dedication of Professor Shaw and her team who are dedicated to fighting this disease and raising awareness.

Helen Morris

Learning & Teaching Manager, Landscape Architecture

I am passionate about MND research and have worked on several research projects and done several fundraising events. In the absence of a cure I want to help to improve the lives of people living with MND. I started my PhD in March 2023 with the aim of exploring how we can remotely monitor respiratory function and physical activity in MND. The hope is that this will allow patients to get access to treatments and support in a timely manner.

Lucy Musson

PGR student, Neuroscience

My Aunty was diagnosed with motor neurone disease in October 2023 after experiencing symptoms for a few months, and sadly passed away very quickly in November 2023. She was only 65 years old. Her deterioration was rapid and unexpected so I fully support the University’s research into MND and the efforts to highlight this terrible condition.

Nina Price

Access Development Manager (Evaluation & Reporting), Access Service

I’m part of a team investigating the nutritional management of people living with MND. Researchers have developed and are now trialling a complex nutritional intervention designed to increase the available energy for nerve cells, which may make them more resistant to the degenerative process in MND. This may lead to a slowing down of disease progression.

Elaine Scott

Trial Manager, Clinical Trials Research Unit, Medicine and Population Health

My father-in-law-to-be was diagnosed with MND late in 2016. He found out due to loss of speech that was down to bulbar MND eventually taking the left side of his body. He was given between three months to a year but fought until 8 June 2018. My wife (Cheryl Parkin-Templeman) and I did two Tough Mudder runs to raise funds and awareness for MND, along with local fundraising in the form of concerts in local pubs and clubs.

Thomas Templeman

Senior Project Technician, EEE

Through observing real-world practice my research aims to understand the enablers and barriers to healthcare professionals and people with MND engaging in meaningful discussions about their options, to reach informed and importantly, timely decisions about gastrostomy. My fundraising activities have included the Paris Marathon, stopping all oral diet and fluids for a week, and experiencing using a naso-gastric tube. 

Sean White

PGR student, Neuroscience

I started fundraising for MND Research at the 2023 Students’ Union Christmas Fair. With the help of some crafting colleagues we raised over £1,000. I am also doing The Big Walk with my Engineering colleagues, as well as a few smaller initiatives, including macrame keyrings; how to crochet and knit sessions; and sweepstakes for cycling tours.

Erica Williams

Knowledge Exchange Manager, RPI PKES

I develop ways to capture the impact that health conditions such as MND have on quality of life. Clinical trials for new MND treatments often use a questionnaire focussed only on physical abilities. MND affects so much more than that. I am part of a team working with people living with MND to develop a new questionnaire that better captures people’s quality of life.

Jill Carlton

Professor of Health Outcomes Research, SCHARR

I am working with clinicians, researchers, and people living with MND to improve quality of life outcomes. I have been inspired by those I have collaborated with who are living with MND. Their desire to get involved and give up their time to help improve outcomes, not only for themselves, but for people who may be diagnosed with MND in the future, is truly admirable.

Philip Powell

Senior Research Fellow, SCHARR

This feature is part of our making MND history campaign