Bàrbara Morera Màiquez: "Tourette syndrome is greatly misunderstood"

LondonIn the latest edition of the Baftas, Robert Aramayo won the award for best actor for his portrayal of John Davidson (1971), a Scottish activist who suffers from a severe form of Tourette syndrome (TS), with involuntary physical and verbal tics. In 1989, a BBC documentary, John’s Not Mad, showed the misunderstandings and aggressions he endured as a young man. Over the years, he became one of the most visible faces of Tourette awareness in the United Kingdom and in 2019, he received a decoration from Elisabeth II.

The film I swear (Uncontrollable), released in April, synthesizes his biography. In one of the film's scenes, Davidson is interviewed in Nottingham by a neuroscientist who researches the syndrome and how to improve the condition of those affected. Thanks to practical application, Davidson improved remarkably. In the credits, she is identified only as Barbara and is played by the Catalan Carolina Valdés. However, in reality, she is Dr. Bàrbara Morera Màiquez, born in Sant Cugat del Vallès (1990). She studied Biology at the University of Girona.

In 2015, just one year before the Brexit referendum, Morera completed a master's degree in Cognitive Neuroscience in Swansea (Wales). Subsequently, she obtained her doctorate in Neuroscience from the University of Nottingham, with a thesis focused on the development of a technology to reduce the tics caused by Tourette syndrome, a condition that affects, to varying degrees, 1% of the population. She is now the co-founder and research director of Neupulse, a spin-off company from the University of Nottingham to develop a device that uses the technology developed during her doctorate and to commercialize it.

Why did you come to the UK?

— Partly due to the adventure of living abroad, but also because we are part of a generation that enjoys unprecedented freedom of movement and work internationally – at least for those of us who are fortunate enough to have access to it. This opens doors for you not only in one country, but throughout Europe and beyond. At that time, before Brexit, the United Kingdom offered particularly strong funding for research, which allowed me to access cutting-edge technologies in neuroimaging and neurostimulation, essential for my work.

To what extent does the film Uncontrollable reflect your real collaboration with John Davidson?

— It is quite true to reality. John came to Nottingham when he participated in our clinical trial, and it was then that he tried the Neupulse device for the first time.

With great success, right?

— The device's effect on John can be defined as decisive, as can be seen in the movie. And when he has it, it will be able to change his life.

Were you involved in the production of Incontrolable to ensure the scientific rigor of the film?

— Yes, Kirk Jones, the director, asked me to review the script (only the part where John meets Barbara and tests the device) before shooting the film, to ensure that all the scientific approach was accurate. I also traveled to Glasgow – where it was being filmed – with the clinical trial device to explain to Kirk how the setup with John had been done, so that they could recreate it with the greatest possible fidelity.

What do you think the movie gets right about Tourette syndrome and chronic tic disorders?

— Practically everything. However, it is important to note that the film revolves around John's life, so the tics shown are those he usually has. Not all people with TS have the same ones, nor do they suffer from them with the same severity as John.

Why did you become professionally interested in the study of disorders like Tourette syndrome?

— The brain has always fascinated me and the idea of developing treatments that can truly improve people's quality of life has always motivated me. My path to studying Tourette syndrome was more of a coincidence, but once I entered this field, I immediately realized the enormous impact this research could have on patients and their families.

Is it a disease known to the vast majority of the population and the scientific community?

— Tourette Syndrome is greatly misunderstood by most of society. The purpose of Uncontrollable is precisely to dismantle these misunderstandings. Within the scientific community, there is indeed some consensus on what activity and brain dysfunction are linked to the appearance of tics. It is known that there is spontaneous activity in the striatum, which causes hyperexcitation of the sensorimotor cortex. This translates into the execution of tics.

How did your research on median nerve stimulation to combat tics begin?

— During the doctorate. We knew that the activity of the sensorimotor cortex is linked to the execution of tics, and that we can modulate this area of the brain by stimulating the median nerve.

Why did they prioritize a portable device for home use instead of a conventional clinical treatment model?

— We asked the community of people with TS here in the UK what they thought we should be prioritising in our research at the University of Nottingham. They told us that what they really wanted was a non-invasive, drug-free treatment that they could use at home and that would give them back control over their own tics.

What does the clinical trial tell us, at this point, about the effectiveness of this approach?

— The clinical trial shows that 59% of people with TS respond to stimulation in a clinically significant way. It may be worth noting that the reduction in tic frequency – an average of 25% – occurs immediately while stimulation is active; on the other hand, the reduction in severity – an average of 35% – is observed after using the device for 10 minutes a day for four weeks. Both motor and vocal tics are reduced.

What are the main scientific or practical limitations that still need to be resolved?

— We still don't know why some people, like John, get an extraordinary benefit from stimulation, while others don't notice such a marked improvement.

Do you believe this type of treatment offers real hope for people living with Tourette syndrome and chronic tic disorders?

— Without a doubt. What's exciting about technologies like Neupulse is that they propose a different approach to current treatments. The most common options are medication and behavioral therapy, which aim to reduce or eliminate Tourette's symptoms. Neupulse proposes an alternative: it serves as a tool that gives people more options and offers them greater autonomy in managing their symptoms. At its core, Neupulse's goal is to empower the individual.

How do patients and families typically receive an intervention based on a device and without drugs like this?

— It gives them hope.

Do you collaborate with any scientific institution or clinical center in Catalonia or in Spain?

— No. Our current objective is to bring this device to market for all those who wish to use it.

As a Catalan scientist working in the United Kingdom, how do you see the possibility of developing or scaling similar research projects in Catalonia in the future?

— I cannot answer this question because I do not know how research funding works in Catalonia. But it is important to consider that in Spain, TS is classified as a rare disease, while in the United Kingdom or other countries it is not. This will make it very difficult to obtain funds for Tourette.