That’s why, each day, Stoke Mandeville Spinal Research does the same, thinking long and hard about how we can make life livable for people with spinal cord injury. With new medical breakthroughs, technological innovation and social insight – and your generous support – we can do more to help people get on with life after paralysis.
Stoke Mandeville Spinal Research brings together the spinally injured, carers, healthcare professionals and researchers to:
As a charity, we can’t do it alone. We work closely with the National Spinal Injuries Centre at Stoke Mandeville Hospital and other spinal centres. And with you, through the generosity of your donation.
Please continue to do so, because your support helps people see there’s life after paralysis.
Founded in 2006, Stoke Mandeville Spinal Research is a national charity that promotes excellence and sustainability in applied clinical research into spinal cord injury. Motivated by the needs of people in the National Spinal Injuries Centre, our vision is to enable people with spinal cord injury to have life after paralysis without the setbacks of debilitating health complications.
Ludwig Guttmann first came across spinal cord injury when he was volunteering as a medic in Germany in 1917. He went on to study medicine in 1918, and by 1933 was considered the top neurosurgeon in Germany.
In early 1939, he left Germany because of the Nazi persecution of Jews, and was able to settle in Oxford, where he continued his research into spinal cord injury at the Radcliffe Infirmary.
In September 1943, the British government asked Dr Guttmann to establish the National Spinal Injuries Centre at Stoke Mandeville Hospital. When the centre opened on 1 February 1944, Guttmann was appointed Director (a position he held until 1966). He believed sport played a significant role in helping injured military personnel to build up physical strength and self-respect.
Guttmann went on to organise the first Stoke Mandeville Games for disabled personnel on 28 July 1948, the same day as the start of the London 1948 Summer Olympics. Dr. Guttmann used the term paraplegic games in order to encourage his patients to take part – which later became known as the Paralympics – and subsequently took the form of the parallel games to the Olympics, to include other disabilities.
Stoke Mandeville Spinal Research is governed by a Board of Trustees that oversees our charitable aims.
Peter has become a widely respected commentator on risk in all its forms, working with Thomson Reuters. Injured on an assignment in Sri Lanka, Peter became a tetraplegic, bringing new perspective to his life.
One of the successors to Dr Ludwig Guttmann at Stoke Mandeville Hospital, Professor Frankel continued the tradition of dedicated care, learning, and research at this institution. His contribution to SCI care and research is immense and still continues into his retirement.
Nick Hutton has worked in advertising for over 20 years. He was spinally injured in a rugby accident in 1994 and spent 13 months rehabilitating at the NSIC. He lives in London with his wife and twin daughters.
Professor Paul Kennedy was a founding trustee of Stoke Mandeville Spinal Research and his sudden passing on September 13th 2016 has left us all at Stoke Mandeville Spinal Research deeply shocked and saddened. He dedicated his life to improving the lives of people with spinal cord injury, in particular their psychological wellbeing, and a tribute to him can be found at www.kennedymemorial.org.uk.
Amanda has over 25 years’ experience of fundraising, publishing and marketing for not-for-profit organisations in the UK and overseas. She currently manages major fundraising campaigns for Buckinghamshire Healthcare NHS Trust, alongside consultancy and voluntary work for other healthcare, research and membership organisations.
Richard Tolkien has worked in the financial sector for over 30 years, now acting as a non-executive director for two companies and an independent expert witness. His brother David had a spinal cord injury in 1982 and spent nine months rehabilitating at the NSIC. Richard’s passion for Stoke Mandeville Spinal Research continues to be motivated by the memory of his brother, who despite overcoming numerous health complications throughout his life, sadly passed away in 2014.
Dr van Middendorp was appointed Research Director at Stoke Mandeville Spinal Research in March 2012. He began his medical and scientific career in the Netherlands and continued conducting clinical research in Brisbane, Australia. Having successfully developed the SMSR portfolio of projects, and achieving highly acclaimed results, he is now a Medical Advisor for Pfizer, Netherlands.
Mr Henderson is a co-opted member of Stoke Mandeville Spinal Research. He is Clinical Director of the National Spinal Injuries Centre.
In 2000, Jamie had a diving accident that left him paralysed from the chest down. Following this life changing incident, Jamie decided work needed to be something that he really loved doing, so he left the city and set up his own art dealership – the Animal Art Fair. Jamie is a passionate supporter of SMSR and helps raise awareness of the vital work we do through our Ambassador programme.
The Trustees are delighted to welcome Dr Taylor to SMSR who brings with him a wealth of experience and passion for research into spinal cord injury. Dr Taylor graduated in Physiology from the University of Sheffield (1986) with a PhD in Neurophysiology and Neuropharmacology from the University of Nottingham (1990). Before joining SMSR, Julian was directing clinical and basic studies focused on sensorimotor mechanisms of chronic complications of spinal cord injury including spasticity and neuropathic pain at the National Hospital for Paraplegia in Toledo, Spain. He is member of the Neuroscience Society (1990), IASP (2001) and founding member of the Castilla LaMancha Pain Society (2010).
James graduated from the University of Southampton in MSc Public Health Nutrition (2010). Since graduating he has worked in Dietetics and more recently in clinical research as a Research Support Manager at Oxford University Hospitals NHS Foundation Trust. James is excited to be joining the team as NIHR Research Manager for the PReSUTINEeB trial. This involves assessing the effectiveness of a new pro-biotic vaccine for the treatment of urinary tract infections. Those with paralysis are particularly prone to such infections due to damage to internal organs such as the bladder caused by spinal cord injury.
Bashak grew up in Cyprus and studied at the University of Hull where she undertook undergraduate and postgraduate study, gained clinical experience and won numerous awards. She is looking forward to submitting an ethical application for her multi-centric study identifying research priorities for young people with spinal cord injury.
Bethel joins us from University of Glasgow having recently complete his PhD. He looks forward to joining SMSR and combining his engineering background with the latest cutting-edge rehabilitation techniques.
Charlotte began her fundraising career at Macmillan Cancer Support, and has since worked for a range of different causes. She is passionate about working closely with supporters to ensure that every penny raised is maximised and appreciated.
Briony has come straight from a 6 month internship at Child Bereavement UK where she learnt a great deal about all aspects of fundraising. She is looking forward to growing the Wheels at Work campaign, as well as expanding the charities presence through the use of social media and supporter engagement.
Anne joins us from Spinal Injuries Association, where she worked for 12 years, 4 years as Director of Fundraising. She brings with her a wealth of experience which she will be directing towards developing SMSR's Corporate Fundraising.
Spinal cord injury is something very close to Melanie's heart, as in 2014 her father spent 6 months in the NSIC following an accident. He is now paralysed and a full time wheelchair user. His life, and the lives of their family are now very different from what they were before, which is why they value the work of SMSR in trying to improve the day to day lives of those affected by spinal cord injury, so highly. Melanie wanted to recognise the value of SMSR's work in some way, and so decided to use her experience to volunteer behind the scenes in the office, with a focus on admin and database management. We are incredibly lucky to have her dedicated skills
As well as her many other commitments, Gill has become a central part of the SMSR fundraising team since she joined us in January 2015 on a voluntary basis. Working along side Briony and Charlotte, Gill supports all aspects of fundraising and is developing new relationships with community groups .
With a background in corporate communications, we are delighted that Caroline has chosen to share her skills with SMSR on a voluntary basis. Caroline will be working with our whole team to raise awareness of our research and generate more publicity for our fundraising and we are really grateful for her time.
Throughout her career, Judith was involved in pharmaceutical and medical research in both administrative and project management roles. More recently, she worked for Buckinghamshire Healthcare Trust in the NSIC at Stoke Mandeville Hospital, and from there she has undertaken the role of Voluntary Secretary to the Trustees.
Here are some of the people who have experienced a major change in their life, adapted to it and made a success of it. Their stories are an inspiration to us, and hopefully to you.
In 2000, I had a diving accident that has left me paralysed from the chest down. I decided work needed to be something that I love doing, so left the city and set up my own art dealership – the Animal Art Fair.
Urinary tract infections drive me up the wall. You can be as careful as you like but they still strike unexpectedly. That’s the difficulty. You cannot be sure, you cannot commit to things, and it really affects my business. Meetings have to be cancelled, clients are let down, artists get frustrated, and you cannot really give them the reason behind it.
I’m really excited that Stoke Mandeville Spinal Research is focusing more on the day-to-day impact of spinal cord injury. The sooner we can clear up UTIs, the sooner I can work on a level playing field.
In June 2008, I was involved in a car accident whilst driving back from my second year at university, in which I crushed my T10 to T12 vertebrae and became paralysed below the middle of my back. After a week in intensive care, I was transferred to Stoke Mandeville National Spinal Injuries Centre, where the nurses, physios and doctors taught me how to go back to living a ‘normal’ life, but now in a wheelchair.
I spent 10 weeks at the NSIC and then returned to Oxford to finish my degree. Whilst in hospital I watched the Beijing Paralympics and was in awe of the competitors I saw on screen, particularly the wheelchair track athletes. Therefore sport, which I had always participated in before my accident, became a huge part of my rehabilitation.
After graduating, I went on to represent Great Britain on the track, alongside working in Commercial Negotiations at the London 2012 Olympic Organising Committee. I proved to myself that being in a wheelchair didn’t stop me from achieving my goals – it actually pushed me to reach for even bigger ones.
I now work for a company called Tough Mudder which puts on big endurance events, running our commercial deals across Europe. This means lots of travel to our New York HQ, and around Europe which I find really easy with my wheelchair. However, travelling across London from Fulham to the City, where our London office is based, is far less easy!
I think it’s vital that SMSR continues to focus on issues affecting the quality of life for people with SCI. It’s all very well other foundations working to find a ‘cure’ for spinal cord injury, but in reality that is a long way off and is unlikely to be effective for someone who has been injured for a long time.
In addition, I really do feel that had I not broken my back and become a wheelchair user, I wouldn’t have had such incredible experiences, from traveling the world representing my country to working with incredible businesspeople.
For me then, the priority is continuing to make sure that my wheelchair doesn’t stop me living life as I want to live it – whether that be through prevention of pressure sores and infections or through improving technology. This is why I fully support the work of SMSR.
In 1996 my motorbike collided with a tractor pulling an 18 tonne trailer that ran over my chest. I broke my T6-T8 vertebrae so am now paralysed below T6. I was a fit an active 24 year old who’d been working in the Royal Air Force for 8 years, losing use of my legs was one of the worst things imaginable to me. I spent the following 7 weeks in the Intensive Care Unit and I don’t have much recollection of that time, or of the accident itself.
I have now been working at the National Spinal Injuries Centre for 4 years. Since my injury I have continued to ski, scuba dive and cycle as well as abseiling and other activities. I have done a couple of charity cycle rides: London to Paris, and London to Amsterdam. I am probably most proud of having qualified as a scuba diving instructor subsequent to my injury.
It’s so important for people to get on with their life after injury and not to wait for a cure. There are many things that can affect your everyday quality of life. Things such as bladder care, bowel care and prevention of pressure ulcers; any of these three things, even individually, can stop an individual from being an active member of society and seriously affect self-esteem and psychological well being. Another important thing, which for me was always a priority, was to get back in to work. I wanted to be earning and feeling like I was contributing. To paraphrase Ludwig Guttmann, rehab isn’t over until you’re a taxpayer again.
In 1969, I was paralysed below the chest in a road traffic accident in Yugoslavia. I returned to work as an Oceanographer in early 1970, and my UK employers allowed me to continue doing marine research using scuba diving equipment, and I travelled all over the world doing so. I retired in 2001.
I was lucky with my health, but slow healing wounds, a burn, and two occasions of pressure sores, have caused real problems. Trips have had to be cancelled at short notice. Even with a lot of care and first aid, things still go wrong.
The day-to-day complications that follow a spinal cord injury can often hinder people from working and can make life very difficult for the family, and in to old age. It is crucial to identify new methods to relieve complications and improve quality of life.
I began riding seriously at the age of 11 and was lucky enough to have been bought my first pony, with whom I competed in local show jumping and one day events. In March 2009, I entered my first season in British Eventing and began with promising results. On the 31st May 2009, I was approaching the final fence in a one day event when both my horse, and I, fell. I landed on my head and suffered a head and brain injury which, after many months in rehabilitation, left me unable to walk or talk and with left sided hemiplegia. After extensive rehabilitation I proudly represented Great Britain in Para Dressage in July 2013.
However, on the 18th December 2013, I was involved in a head on car accident. I suffered another bleed to my brain and lost the use of my arm among other more minor injuries. After weeks of physiotherapy, it was discovered that the three main nerves connecting my spinal cord to my arm; c5, 6 and 7 had become detached, and without surgery I would have no hope of recovery. In April 2014, I decided to undergo the six and a half hour operation in an attempt to regain some use. I am now working hard in my physiotherapy and rehabilitation in order to return to competitive riding.
The complications that come with an injury to the spinal cord are challenging, for me losing the function of my arm, make chasing my dreams of riding much more difficult, but I will never give up. My motto throughout has been: ‘look forward, don’t dwell on the past, turn every negative into a positive, and never let your disability hold you back or determine who you are.’
I was involved in a diving accident when I was 18, leading me to becoming tetraplegic. I underwent extensive rehabilitation at the National Spinal Injuries Centre at Stoke Mandeville Hospital and following that I went on to the University of Cambridge to undertake a degree in engineering. Since graduating, I have worked as a researcher in IT – and I love research of all kinds, whether it be technology, medical, or examining ancient scrolls. I believe research makes our lives better – and I have evidence to prove it. In the twenty years I have been doing research, my field has turned the internet from something that only a few professors could access at a few leading universities, into something that anyone can access, at any time, through the phone in their pocket.
In comparison to the ever-growing technology field, developments which support people with Spinal Cord Injuries are frustratingly slow. In areas such as improved catheter design, muscle stimulation and hands-free control, the latest materials and miniaturisation techniques should be enabling us to do things that were impossible twenty years ago, whilst avoiding many medical complications – but these innovations are not yet in the mainstream, if they exist at all.
I am delighted that SMSR is taking on the task of researching new ways to manage Spinal cord Injuries. I sincerely hope that with the support of the NSIC and it’s world-renowned medical expertise, combined with imaginative researchers, companies, academics and medical engineers, SMSR can produce new treatments that are effective, practical and commercially available, and I greatly look forward to their success!