The art of research – shaping science in the Grand Challenge

People with type 1 diabetes are at the heart of the Type 1 Diabetes Grand Challenge. Their experiences are woven into everything we do, from the design to delivery to dissemination of research.

We spoke to Amelia Skachill Burke, a glass artist from Wales and mum of Ruby who lives with type 1, who works closely with Professor David Hodson, Dr Ildem Akerman, and Dr Johannes Broichhagen’s team, drawing on her family’s experience of the condition, to make sure their research is relevant and accessible to people with type 1 diabetes.

Type 1 diabetes in the family

Amelia’s daughter Ruby was diagnosed with type 1 diabetes when she was nine.

Amelia said: “I had some awareness of the condition because we have a family history, but it crept up on us all. After Ruby was diagnosed, it took a few years for us as a family to get a handle on it and her insulin regimes.

“She’s now 16 and gets amazing support from her school and ever-improving diabetes technology like hybrid closed-loop systems. But insulin and technology aren’t cures for type 1.”

Stepping towards science

Amelia said: “I heard about the Type 1 Diabetes Grand Challenge from Professor David Hodson. I approached him about two years ago when I was applying for grant funding from the Arts Council Wales, for my artwork. I wanted to do some background research for my art – to look at islet cells, gain information, gain imagery, things to work from to make glassware inspired by type 1 diabetes.

“He showed me around his offices and labs, and he and the team were so accommodating. We had a lot of conversations, and then he spoke to me about the Grand Challenge. He asked if I wanted to be involved as a PPI (patient and public involvement) co-applicant, and I was more than happy to do anything I can to help.”

Professor David Hodson said:

“Amelia has vast lived experience of type 1 diabetes, but is also a very kind, compassionate, and talented individual. It’s important for us to have someone like Amelia on the research team, to ensure that all aspects of the studies are relatable and relevant to those living with type 1 diabetes.”

From research to reality

Much of the research funded by the Grand Challenge is shaped, supported, and shared by people like Amelia, whose lived experience of type 1 diabetes through Ruby is completely invaluable to our scientists.

Amelia said: “I’m not from a science background, so the goal of my role is to give a realistic view of the research. To make sure the information is accessible to anyone wanting to know what’s being done to help type 1 diabetes.

“Scientific terms need to be well-explained. And when there’s a potential solution or a breakthrough, what’s the real impact it could have on the day-to-day life of someone with type 1?”

Amelia Skachill Burke gives a talk about how she represents beta cells in her art

Bringing science to the studio

Amelia combines her interest in science with her passion of glass art, drawing inspiration from her experiences and the world around her.

Amelia said: “My daughter inspires me. She’s struggled so much with her diabetes and we’ve all struggled together. But we’ve always done it as a family – we never wanted her to feel alone or overwhelmed by it. So anything we could do to support Ruby is what we’ve always done. When the opportunity came for me to bring medicine and art together, it just felt like a no-brainer. I’m inspired by scientific imagery, but at the heart it’s Ruby that inspires me all the way through.

“I think art and research work together – the art explains the research and gives people a visual representation of what’s happening in the world. I’m currently working on a glass interpretation of a pancreas – the pancreas is a very important organ with lots of functions, but only 2% of it is actually made up of beta cells.

“These infinitesimally tiny cells have a huge impact on everyone’s everyday life – they’re like gold dust, and I’m playing with the idea of using gold dust to try to explain the significance of them in my glass art.”

More of Amelia’s artwork

Research through the looking glass

Working closely with Grand Challenge researchers puts Amelia at the cutting edge of type 1 diabetes research. Amelia said: “My hope for the future is a cure. Prof Hodson’s team and lots of other scientists are working on this at a beta cell level, and it would be amazing if we can find a solution where people with type 1 don’t have to rely on technology or insulin. Something that makes their lives easier, whether it comes in the form of medicine or not.

“I’m planning to run some glass workshops as well with kids and teenagers with type 1, to try to expand and explain my artwork and type 1 diabetes research. Anything we can do to shed more light on the condition and research, spread awareness, and support everyone living with type 1 diabetes.”

Professor David Hodson said:

“It’s been an amazing experience to see Amelia turn our microscope images into colourful and tactile artwork installations, which simultaneously represent the beauty and challenges of type 1 diabetes.”

Find out more about our community of people with type 1 who are involved with the Grand Challenge.

Glass art in the kiln