When one of Professor Pam Shaw’s patients asked her if she were given £20 million how would she spend it to find a cure for one of the world’s most devastating diseases, the distinguished neurologist thought she was just being asked a polite question to pass the time.
But she was wrong. Her patient, one of the more than 5,000 people in the UK who suffer from motor neuron disease (MND), was the wife of an eminent obstetrician at St Mary’s Hospital in London and an experienced fundraiser for healthcare causes.
“I thought about it for a few seconds before saying how I would build a dedicated research institute where we would have clinicians and scientists working together under the same roof,” Professor Shaw said as we met in the light-filled atrium of the recently built Sheffield Institute for Translational Neuroscience (SITraN).
“I told her I would have a team of people with a diverse range of skills because this is a very complicated disease and that I would have a building with lots of natural light coming in and the very best facilities so that we could attract the best people from around the world,” she added. “And that was my vision in the very unlikely event that someone would give me £20 million.
That her dream is now a reality is largely the result of what she calls “a magical combination of people who got behind the idea” and helped raise more than £15 million in private donations. Some of the benefactors were wealthy individuals who not only gave large sums, but who also worked tirelessly to ensure she reached her goal.
Others were people who did remarkable things to raise money – from skiing to the South Pole to repeating William Bligh’s journey from Tonga to Timor – to help defeat a disease that has devastated the lives not only of those afflicted by it, but also their families, friends and colleagues.
“I never imagined that something so magical could happen. Very early in my medical career I came to understand how terrible this disease was, and how it has a shattering impact not only on the sufferer but also on their family and friends,” Professor Shaw adds.
Four years since that conversation with her patient, Professor Shaw and her team are at the forefront of finding therapies and treatments for the disease. It is a measure of their success that, since the new building was officially opened by the Queen two years ago, it has tripled the annual amount of research funding.
She attributes this success to a number of factors, but not least to the physical and cultural openness of the new institute which she believes stimulates and facilitates collaboration between scientists and clinicians.
“In the past, we had good facilities but our research teams were scattered at some distance from one another. Now we bump in to one another all the time. SITRaN is a truly multi-disciplinary environment where teams form to find solutions. Sheffield is so good at that.”
She cites a recent clinical project called Head Up, which was set up to design a much more comfortable and cosmetically acceptable supportive collar for patients whose neck muscles are impaired by the disease. “One of our colleagues Dr Chris McDermott has brought together a team including clinicians, patients, nurses, physiotherapists, fashion designers, and bio-material engineers, who have now designed a prototype collar which will soon go in to production.” The result will be a medical device that improves the quality of life of the patient – which is a key part of the institute’s work.
The other aspect is the search for therapies and cures, and one of those leading this quest is Professor Mimoun Azzouz, who is one of the world’s leading experts in the development of gene therapies for motor neuron disease. Professor Azzouz has been extremely successful in attracting an array of scientific awards including the prestigious European Research Council’s Advanced Investigator Award - a top level EU award which acknowledges his pre-eminence in European biomedical research. “This institute is the right place, with the right people at the right time”, says Professor Azzouz. “As a result, we are attracting a lot of interest from medical companies around the world who are beginning to take an interest in the less common diseases such as MND. But MND is only seen as less because it kills its victims so quickly. Our aim is to improve these survival rates dramatically.”