By Dr Tom Robinson

 

My name is Dr Tom Robinson, I’m a research fellow working in the Healthcare Technologies Institute at the University of Birmingham, and I develop materials-based technologies to improve the quality of life for people with EB.

 

Which aspect of EB research are you most interested in?

My focus is developing technologies that will improve quality of life for people suffering with EB in the short to medium term. I’m hopeful for a cure to the underlying causes of EB, and progress is being made all the time, but until then there’s a lot we can do to ease symptoms and improve everyday life. My specific interest is preventing the progressive scarring some people with EB get on the internal mucosa, for example in the mouth, which can make it difficult for them to eat, drink, and brush their teeth – simple things many of us take for granted. To help with this, I’m formulating new multifunctional materials that can prevent this problem in several ways simultaneously. On the large scale, materials that stick to the inside of the mouth and stay there for a long time, providing lubrication and protection against the initial damage that initiates the problem. On the small scale, molecules that can inhibit the biological pathways that cause fibrosis, as well as prevent scar material being laid down. My vision is a technology that people with EB can use easily every day, without any additional disruption to their lives, that makes a real difference to them.

 

What inspired you to work in EB research?

The thing that inspires me most are the people I’ve met with EB, the way they overcome the extra challenges they face every day and just get on with their lives. That’s my biggest motivation, trying to lessen those daily burdens to make it easier for people, to go to school, go to work, and go out with their friends. Everyone I’ve met who works in EB has a really positive attitude as well; clinicians, researchers, fundraisers, everyone is so driven to make a difference to the EB community, it’s a very inspiring area to work in.

 

What does funding from DEBRA mean to you?

The funding from DEBRA is so important because it allows me to commit my time and energy to EB and focus on developing new technologies and therapeutic strategies. We can only spend time researching what’s funded, which is why it’s crucial to have DEBRA as a funder dedicated solely to EB research. DEBRA is such a special funding partner, there’s constant back and forth and everyone is on the same page, so it really feels like a team effort.

 

What does a day in your life as an EB researcher look like?

Most days I’ll be in the lab first thing in the morning. My interdisciplinary approach to EB research means my lab work is really varied. Some days it’s formulating new materials and examining their properties; how lubricating are they, how long might they stay in one place? Other days I’ll be modelling their biological response – are they safe, how well do they prevent fibrosis? Outside the lab, I’ll be analysing the results of these experiments, interpreting the data, and reading scientific literature to contextualise my results. I then make graphs and figures of my data, to explain what I’ve found and share my results. I also prepare my work for dissemination, which can be in writing, for example articles in scientific journals, or as a presentation. I’ve presented my EB research at scientific conferences, to the DEBRA research and scientific teams, and to non-specialist audiences and the public through outreach events. 

 

Who's on your team and what do they do to support your EB research?

My approach to creating new EB technologies is highly interdisciplinary, which means combining expertise in materials science, biology, chemistry, formulation engineering and clinical practice. I’m really privileged to work with a group of people who are so knowledgeable, but also incredibly passionate about EB. Profs Liam Grover and Anthony Metcalfe are the gurus of materials and biology, respectively, specifically in wound healing which they have both been working in for a number of years. In addition to a plethora of fundamental understanding, both Liam and Tony have experience in translating benchtop innovations to patient use, something that’s really important to making a real difference to the EB community. I also work with Profs Adrian Heagerty and Iain Chapple, academic clinicians who specialise in the dermal and dental aspects of EB, respectively. Both have unique insights, and their input is invaluable when considering which innovations might have the greatest positive impact on the daily life of someone with EB.

 

How do you relax when you're not working on your research?

I try and do some sort of exercise most days, to keep the body and brain ticking over. I love running around the canals and country paths of Birmingham, swimming, both indoor and open water, and I’ve done a few triathlons, but I’m not a very good cyclist! I listen to a lot of audiobooks and podcasts, usually when I’m running or commuting, I enjoy board games and video games, and I’m very partial to a quiz.