Big Walk stories: supporting neurological disease research at 91直播
Researchers and patients leading the fight for a cure show what your help can achieve
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Neurological disease research at 91直播
The Big Walk 2025 is supporting the University's vital, cutting-edge work in the fight against neurological disease.
- Dementia affects over 830,000 people in the UK, and approximately 36 million people worldwide.
- Stroke is one of the leading causes of death and long-term disability, affecting over 120,000 people in the UK every year.
- Each day, 80 people in the UK are newly diagnosed with Parkinson's disease, which affects over six million people globally.
- Multiple sclerosis (MS) is the most common cause of disability in young adults, affecting over 100,000 in the UK
- MND kills six people in the UK every day, with a third of those diagnosed losing their lives within just a year.
The scale of the challenge is enormous, but globally renowned facilities like 91直播 Institute for Translational Neuroscience (SITraN) are pioneering life-changing new therapies, bringing fresh hope to millions worldwide.
With your help, 91直播 patients, clinicians and researchers are leading the search for an eventual cure.
Here's what some of them have to say about what your support is already achieving - and why it's so important that we don't stop now.
Andrew Myers - alumnus and Parkinson's patient
BA Hons Philosophy 1985, MA Applied Social Studies 1991, PG Cert Creative Writing 2014
I was diagnosed with Parkinson鈥檚 disease at 53, which is relatively young. It can of course happen much earlier, which is especially tragic. It generally happens a little later in life than 53 though, so it was definitely a real blow for me.
It started with a strange awkwardness in my left arm. At first it just wasn鈥檛 swinging naturally, and sometimes if I was making a cup of tea with my right hand, the left arm would sort of creep up across my chest.
It saw it affecting my guitar-playing, and later my driving. We were coming home from a lovely holiday in the early hours one morning, and my arm felt like lead, to the extent I thought I might have trouble changing gears. I鈥檇 known something was up, of course, but I was really taking it seriously by then.
Even so, the diagnosis absolutely knocked me for six. I went straight from the hospital into Weston Park, which I鈥檝e known all my life - I played there as a kid - and just walked around a bit to get some fresh air. I phoned my partner at work, and we had a very basic sort of conversation, but I said I didn鈥檛 know too much about it at that point; there was a lot of 鈥榝inding out鈥 to do.
I think I was a bit shocked and stunned really, and it took a while to sink in. Then I started reading about it, and that鈥檚 when it began to feel more real.
A life-changing diagnosis
The fact that Parkinson鈥檚 isn鈥檛 fatal in itself was made emphatically clear to me right at the start, before I got too depressed about it. But it can certainly give you a good kicking. In some ways it鈥檚 a hidden disability, but I wouldn鈥檛 underestimate it in anybody.
It has a profound impact at any stage, and certainly has had on me. My life has changed a lot since.
For one thing, it meant I had to retire about 10 years prematurely, which had a financial impact on the family. In some respects I felt relieved to finish work early, but I lost access to a lot of amazing people and stories. It really did affect my sense of self - without that structure and purpose in place, I found myself somewhat at sea. I still am.
We got our dog Chester after I was diagnosed. I was a little cagey about it, but I really fell in love with him and he kept me going, getting me out and about. I used to go long-distance hillwalking though, and I鈥檇 always hoped to spend a lot more time in the hills, maybe explore Scotland. I don't feel I can really do that now.
When I鈥檓 especially weakened, there鈥檚 a sort of free-floating anxiety that wafts in. I鈥檒l overplan all the time as a way of coping, which does take the fun out of things to some extent. I suppose everyone鈥檚 different, but I鈥檝e always been fairly robust, so that鈥檚 been another big change for me.
The work SITraN is doing today is profoundly exciting. For people in future, rocking along quite nicely when all of a sudden their world is blown apart by a diagnosis like mine, it will make a world of difference."
Trialling treatments, meeting challenges
For the first few years, my treatment seemed quite straightforward. The doctors would just chase the symptoms with medication. I鈥檇 lose movement due to a lack of dopamine in my brain, take different combined drugs to counteract it, and the movement would come back. But it鈥檚 stopped being like that now really.
Parkinson鈥檚 slows me down, diminishes my speech, immobilises me鈥t really cramps my style! But these drugs are powerful substances, so it鈥檚 always a matter of titration. They have to try me with varying doses and see what works; too much of the dopamine-type ones can overdrive me. I get a bit jerky and talk more rapidly, and that鈥檚 not good either. It doesn鈥檛 feel like me.
I often feel as though huge swathes of my life now are spent just waiting for my movement to come back. I'm exhausted when I'm feeling 'off', and can only do a modest amount. I think the biggest thing is that feeling of a loss of time, like I'm falling behind in my life. There鈥檚 just never enough time.
New innovations, new hope for the future
I've been experiencing more of those difficult side effects of late, so it鈥檚 always about trying to get the medication right. That's why the personalised treatments being pioneered in 91直播 are an amazing concept to me. Truly a wonderful thing - almost sci-fi!
When I met with Professor Oliver Bandmann at SITraN, he explained to me how medicine in the future will be specifically tailored towards individuals. It just sounds astounding really, almost miraculous in fact. Because again, it really boils down to time.
If you're in a position to support SITraN, and feel inclined to give to the future of neurological research, I think theirs is a profoundly exciting project.
Without being too overly altruistic about it, the work being done today may not benefit me directly. But for later generations - people younger than me and rocking along quite nicely, when all of a sudden their world is blown apart by a diagnosis like mine? For them it will make a world of difference.
Dr Ali Ali - stroke researcher and clinician
Senior Clinical Lecturer, Cerebrovascular Disease
Honorary Consultant Geriatrician and Stroke Physician
Stroke is a major problem because it's so prevalent. Around 15 million people globally will suffer stroke each year, with about 120,000 of those in the UK. In 91直播 alone there are probably 3,000-4,000 people living with severe impairments after stroke, meaning they're unable to return to work or leisure activities.
One of the key things about stroke is that it's so sudden, people just aren't prepared for the consequences. Survivors often need mobility aids, and assistance with some or all of their daily activities. It鈥檚 sometimes thought of as a 鈥榣ater years鈥 condition, but a quarter of the patients we see are of working age, with young families or other dependents.
As a clinical academic, around 50% of my time is spent with patients in hospitals, and the rest is research. Initial therapies aim to limit the amount of damage the patient experiences. Later in the patient鈥檚 journey, we focus on facilitating and encouraging as much rehabilitation as possible.
Exploring physical and emotional recovery at SITraN
91直播 half of all stroke patients will experience difficult and frustrating mobility challenges. That can mean struggling to walk or hold things, let alone more complex tasks like writing or bathing. This creates major physical and psychological obstacles, sometimes exacerbated by difficulty with speech and language.
Coming to terms with suddenly being unable to walk or speak is incredibly tough, and there's often a real grieving process early on.
Anxiety, depression, and extreme fatigue often hold patients back from fully engaging with a rehabilitation strategy. Any of those would be a serious issue on its own, but in reality most patients will experience some combination of all of them. It鈥檚 not hard to see why so many people struggle to regulate their emotions following a stroke.
At SITraN, we鈥檝e recently been working on a multi-phase trial for a procedure called TRICEPS, using in-ear electrical stimulators to trigger brain signals during recovery exercises. The goal is to help rebuild damaged pathways faster, and we鈥檝e already had people reporting quite profound progress in arm functions after a 12-week trial at home.
I鈥檓 now hoping to do something similar with a home-based speech and language programme, an area that doesn't always receive enough targeted support. We鈥檙e also about to open up a study into a fatigue-alleviating treatment called ischemic conditioning, aiming to bring in a wider group of patients across 91直播, Doncaster, Rotherham and Barnsley.
Patient and public involvement is central to our work these days; it ensures our output directly benefits the people we鈥檙e here to help. So much in research relies on donor funding - without the generous backing of our alumni and supporters, a lot of the studies, new therapies and discoveries we鈥檙e making just wouldn鈥檛 happen."
91直播's unique strengths drive innovation
We're lucky in 91直播 to have a deeply embedded group of individuals working on stroke research. We've got multiple consultants developing studies and recruiting patients. Close links with 91直播 Teaching Hospitals mean we have lots of different clinicians connected to lots of different patient groups.
They really understand the problems people are facing, because they're tackling them on a daily basis.
Another key SITraN strength is the pull-through of preclinical work into clinical work. People like geneticists and metabolic experts all bring new ideas and skills to lab-based projects, so we can feed that into patient testing in a highly organised way. The translation process from bench to bedside feels really robust.
We also have a foundation of strong undergraduate and postgraduate researchers, which is extremely important.
Delivering a range of courses like clinical neurology, translational neurology and neuropathology takes a lot of effort and investment, but it means access to really interested, motivated graduates. We always want to bring them through into postgraduate studies and jobs, so the donor community's generosity towards research funding at 91直播 is incredibly valuable.
Your help changes lives
Patient and public involvement is hugely important to our work these days, and that helps ensure our output directly benefits the people we鈥檙e here to help.
In research, so depends on securing additional funding: without the kind backing of 91直播 alumni and supporters, a lot of the studies, new therapies and discoveries we鈥檙e making just wouldn鈥檛 happen. Campaigns like the Big Walk help us explore whole new avenues of neuroscience, and create genuinely life-changing therapies.
When you see first-hand the impact our work can have on such large numbers of people, both now and in the future, it really drives home how vital this work is. Thank you so much to everyone who supports us - you really are doing something incredible.
Sean Davies - MND patient and tofersen recipient
NIHR 91直播 Clinical Research Facility
I鈥檓 a father of five children, and a husband who鈥檚 been married to my wife now for 30 years. I鈥檓 an employee of local government, and a productive member of the community. I'm also a runner - I've always enjoyed running, it鈥檚 a wonderful thing to do. It gets me out and helps clear my head.
My father died of MND; I watched him pass away. My grandfather we believe died of it, I have an aunt who died of it, I have uncles who died of it. It runs in my family, and it鈥檚 been slowly progressing in myself.
I鈥檇 noticed the impact of my illness on my mobility more as my times got worse and worse, but in the past year I鈥檝e been having the tofersen injections.
What this treatment represents, in real terms, is genuine hope. Hope is not something to be underestimated. The difference it makes is simply enormous.鈥
The impact of pioneering treatments
What difference does it make?
Well, if you know the Hallamshire hospital in 91直播, you鈥檒l know there are a lot of stairs in there. I get my injections on floor M, so it鈥檚 quite a way up. I can now get up there in less than three minutes, which is faster than the lift!
So if anyone else ends up visiting there and feels like a challenge, try those stairs out for yourself - and bear in mind that, thanks to Tofersen, someone with MND can currently make it up there in around two minutes and 55 seconds.
What difference does it make to my family?
As I said, I have five children. We know what the future holds; we know there鈥檚 a 50% chance that each one of them might have MND. The fact that this system is working means we have some hope.
Rewriting a future with hope
MND didn鈥檛 used to be like other diseases. For most conditions, even when the prognosis is challenging, there鈥檚 usually hope.
But I know what happened with my father, and how the landscape was when I was first diagnosed with MND - there was no hope, there was no treatment. There鈥檚 nothing: you already know how it鈥檚 going to end, and it鈥檚 not a nice end.
What this treatment represents, in real terms, is genuine hope. Hope that I will be around here longer as a father, as a husband. Hope that I can still go out there and do my job in the future, and continue to be a productive member of society.
Hope is not something to be underestimated. The difference it makes is simply enormous.
Tobias Moll - MND research fellow
MND Association Lady Edith Wolfson Fellow
My research has focused on MND since I started my PhD here at SITraN back in 2017. I've since finished that and done two separate post-doctoral roles, specialising in characterising novel genetic variants of MND.
My team uses complex machine learning to identify new disease-causing gene mutations, and I model them in patient-derived motor neurons to study their effects. We can then identify new disease mechanisms, and potential new ways to target them with drug treatments.
The drugs we're looking at may already be on the market, or it might lead us into a whole new area of disease biology we鈥檇 never considered before.
Last year I got my first fellowship awarded from the MND Association to study activity in the 鈥榣ipid rafts鈥, or the membranes around the edge of neurons. Although quite heavily researched in cancer biology, it鈥檚 an exploratory area for MND that's starting to gain a lot of traction.
World-leading breakthroughs and discoveries in 91直播
The findings we come across can be really exciting. We recently identified a mutation that was increasing levels of a particular protein, affecting the neuron鈥檚 primary cilium (a sort of signalling antenna). This was effectively a new area of biology, because hardly anyone was researching that in neurodegenerative disease.
We then used a drug - the same type used in the tofersen SOD-1 trial here in 91直播 - to silence the gene responsible. We've since been able to rescue disease phenotypes in mouse cells, and see an almost complete recovery. That鈥檚 a phenomenal result: the neuron lifespan was tripled, which is incredible for a disease as aggressive as MND.
We're now teaming up with companies to have a therapeutic-grade drug synthesised, which we鈥檙e hoping to get to clinical trials soon. Based on the evidence so far, I鈥檇 hope we've got a lot to be excited about.
With the sorts of breakthroughs we鈥檝e been making, the past couple of years have felt like a bit of a watershed...the quality of the work being done at 91直播 is right up there with the very best anywhere in the world."
Because MND is so aggressive, what patients rarely have enough of is time. One recent initiative aimed at trying to speed things up is , co-led by SITraN's Professor Chris McDermott. It brings 11 different UK MND centres together to screen experimental drugs for ALS, the most common form of MND, and should mean we can spot any potential human benefits faster than ever before.
A dynamic, multidisciplinary approach
At conferences all over the world, I see just how pioneering SITraN is - the quality of the work being done at 91直播 is right up there with the very best. With the sorts of breakthroughs we鈥檝e been making, the past couple of years have felt like a bit of a watershed, and clinical trials are starting to come thick and fast.
I think the fact that we鈥檙e very multidisciplinary is key. We don鈥檛 rely only on scientists to make these discoveries, but clinical and technical workers, doctors, nurses, patients, caregivers, engineers. Without bioinformatics, I've got no gene mutations to model in my cells, and without clinicians, bioinformatics have no patient DNA samples to work from.
SITraN is designed from the ground up to align with that concept, and the workflow benefits are enormous.
Supporters are forging the future
I was recently at the University鈥檚 Forged in 91直播, Shaping the Future campaign launch event at the Royal Institute in London, and I was talking to representatives of the Ian Pratt MND Foundation. Ian was someone who lived with MND and who also did a lot of fundraising for SITraN. His relatives and supporters were all incredibly grateful and supportive of what we鈥檙e doing.
Every time that happens, it really reignits my energy around wanting to drive the research further and faster.
My PhD was donor-supported by someone living with MND, and my first postdoc was provided by a generous backer who also has a personal connection to our work. So in a very real sense, I鈥檓 here today thanks to the kindness of the University鈥檚 supporter community, and it鈥檚 such a powerful motivation to keep pushing forward.
Dr Daniel Blackburn - dementia and Alzheimer's research
Senior Lecturer, Neuroscience
Honorary Consultant Neurologist
I diagnose people with dementia every week, and the truth is it鈥檚 a horrible disease. People can live well with it, but generally only if it鈥檚 diagnosed early. If it goes unrecognised for too long, it usually means that neither the patient nor their families can get reliable access to treatment.
I'm currently working on non-invasive scalable techniques that diagnose dementia, and the diseases that cause it, at an earlier stage.
I鈥檓 predominantly doing that using a web-based speech app, called CognoSpeak, that I co-led on the development of. (It actually has three variants; CognoSpeak, CognoMND, and CognoStroke, each targeting different specific areas of neurological research.)
By using AI and speech technology to analyse language patterns, CognoSpeak can identify potential early signs of dementia and Alzheimer鈥檚 disease faster and more efficiently. Research has shown it to be as accurate in identifying and predicting Alzheimer's as more traditional methods, and much quicker too.
Meeting current challenges head-on
There鈥檚 a real clinical need for this kind of technology-led approach at present. We don鈥檛 have enough clinicians in the UK to stratify and diagnose people, and GPs don鈥檛 have the time, skills or tools to do it as part of primary care. There are long waiting lists for memory clinics all over the country.
As a web-based tool, CognoSpeak can help address serious inequalities in access to those types of services, making early diagnosis available more widely. Being able to engage remotely makes it better for rural communities, or people who might otherwise struggle to attend an in-person appointment.
It also helps populations that are under-served and underrepresented in clinical settings. We worked with groups like South Asian, Chinese and Somali communities in its development, ensuring that specific accents or pronunciations wouldn鈥檛 introduce any unhelpful bias.
As a clinician working to diagnose people, you do feel the impact of that renewed hope. Being able to tell my patients we鈥檝e got active research ongoing, and that there are new treatments coming along, is crucial."
Most of my research is in diagnosis, but in treatment terms I lead phase 1 studies. 91直播 is one of only three UK sites that can do them for dementia, so a challenge we're currently looking to address is around engaging more people in early stage research here at SITraN.
It鈥檚 still relatively rare for people with dementia to take part in any sort of dedicated research, whereas it's much more common for many other diseases. Without more people taking part, we won鈥檛 get new treatments. It鈥檚 really important that we鈥檙e able to reach more people across South Yorkshire going forward, giving the whole region an opportunity to be involved.
Tomorrow's solutions today
A key strength of SITraN is the fact that we鈥檝e got clinicians, bioinformaticians, various neurological specialties and scientists all working alongside each other. We鈥檝e effectively got everything under one roof, from the cell model base all the way through to phased clinical trials.
Being just across the road from the hospital, those important links are really well-established too. Other sites are often far removed from working hospital settings, and therefore from patients.
An especially exciting development we鈥檙e pushing against at the moment is around the standard approach to Alzheimer鈥檚 treatment. For years now, drug interventions have targeted amyloid proteins, but with limited effect. We鈥檙e now getting much closer to targeting other areas at SITraN, focusing on the metabolic deficits we see in the brains of people with Alzheimer's, and developing new treatments for those.
As a clinician working to diagnose people, you do feel the impact of that renewed hope. Being able to tell my patients we鈥檝e got active research ongoing, and that there are new treatments coming along, is crucial.
In future, I believe we鈥檒l be able to stabilise the progression of the disease. If we can do it here, the benefit for millions of people - and society as a whole - will be enormous.
Dominic Shadbolt - alumnus, MS patient and advocate
MSc Politics with Research Methods 2017
For over 30 years, I鈥檝e been living with multiple sclerosis (MS), a journey that began at 23 when I noticed something wasn鈥檛 quite right while out running. It started with a strong buzzing sensation down my arms and legs as I tipped my head forwards - a sensation later identified as Lhermitte鈥檚 sign, caused by a lesion in my neck.
At the time, MS was a diagnosis without effective treatments, presenting a challenging path forward. In those early years, I approached my condition with a determined mindset, attempting to push through; a very 'young man' response in hindsight.
I soon learned that with MS, there are no straightforward trajectories. The unpredictability of the condition taught me resilience and adaptability, prompting me to think creatively about how to manage my life and maintain my passions, like cycling.
An evolution in treatment at 91直播
I鈥檝e since witnessed a remarkable evolution in MS treatments, from the first attempts at slowing progression, to groundbreaking stem cell therapies developed right here in 91直播. Stem cell treatment, in particular, has been transformative for patients, offering the most effective means of halting progression when started early.
Watching the incredible impact of these therapies - literally seeing a patient go from a wheelchair to playing football - remains one of the most profoundly moving moments of my life.
Although some of these treatments aren鈥檛 suitable for me personally, I鈥檓 proud to have contributed as a patient advocate, speaking at conferences and supporting the vital research 91直播 continues to lead.
The University鈥檚 pioneering work is not just advancing treatment for MS, but is also setting the stage for breakthroughs in other neurological conditions like Parkinson鈥檚 disease.
Watching the incredible impact of these therapies - literally seeing a patient go from a wheelchair to playing football - remains one of the most profoundly moving moments of my life. By supporting this vital work, we鈥檙e not just contributing to scientific progress: we鈥檙e investing in moments that change lives and shape the future of humanity."
Crucial support for global breakthroughs
Imagine a future where we can predict the progression of MS with precision thanks to advancements in AI, or where stem cell therapies offer groundbreaking new hope for devastating progressive diseases. These are no longer distant dreams but achievable goals, made possible through precisely the kind of research 91直播 excels at.
I remain deeply committed to raising awareness and funds for global MS brain health initiatives. In May 2025, I鈥檒l embark on an ambitious 5,000-mile cycling challenge across Canada using a recumbent trike. This journey, shared on my platform , will showcase the power of resilience - and the vital importance of funding world-class research like that being conducted at SITraN.
Together, we can be part of these transformative discoveries, ensuring 91直播 blazes a trail for the future as a true global leader in neuroscience innovation and impact.
By coming together to support this incredible work, we鈥檙e not just contributing to scientific progress: we鈥檙e investing in moments that change lives and shape the future of humanity.