The ART-TRAnslations Project, supported by Life Arc and the Cambridge Rare Disease Network, is more than just an art exhibition; it’s a radical merging of art and science designed to render rare diseases visible in new and imaginative ways. This visionary initiative pairs 20 scientists with 20 artists, resulting in a collection of awe-inspiring artworks that convey the science, struggles, and resilience of the rare disease community.
In one such collaboration, Dr Gavin McStay and ceramic artist Charlotte Morrison reinterpret mitochondria through ceramics, while Dr Katie Coveney and illustrator Lele Saa illuminate the realities of Noonan syndrome with an interactive activity book. These unique artistic expressions delve into the world of science through powerful, sensory storytelling, inviting audiences to connect with rare diseases in a profound and personal way. Here’s a glimpse into these remarkable collaborative journeys.
Exploring the Powerhouses of Life: Gavin McStay and Charlotte Morrison’s Mitochondrial Art
For Dr Gavin McStay, mitochondria are more than just cellular powerhouses—they are a fascinating microcosm of energy, life, and resilience. With a decade of experience in public engagement, Gavin’s passion lies in making science accessible through innovative, tangible means. Collaborating with ceramicist Charlotte Morrison, Gavin found a way to bring his research on mitochondria to life, inviting audiences to interact with intricate, hand-crafted ceramic pieces that embody the essence of mitochondrial structures.
Together, Gavin and Charlotte explored mitochondria’s role in life—from conception through to the final moments. They focused especially on mitochondrial diseases and the impact these elusive disorders have on patients through a humanistic perspective. This dialogue sparked an exploration that saw Charlotte translating the mitochondrion’s complexity and multifaceted role into ceramic forms, each piece capturing aspects of the cell’s strength, vulnerability, and essentiality to life.
“I want people to understand scientists and appreciate who we are and what we do,” Gavin expressed. There are profound similarities between scientific research and art: both demand observation, iteration, and creativity. I aim to make the world a better place by creating projects that engage and inspire, especially for young people who may one day become scientists.” Gavin’s enthusiasm for public engagement fuels his vision to make science not just educational but immersive and inspiring.
“I want people to understand scientists and appreciate who we are and what we do,” Gavin expressed. There are profound similarities between scientific research and art: both demand observation, iteration, and creativity. I aim to make the world a better place by creating projects that engage and inspire, especially for young people who may one day become scientists.”
Charlotte’s ceramic works evoke the mitochondria’s delicate folds and ridges, symbolising both the resilience and fragility of these structures. Her approach allows visitors to not only observe the ceramic forms but also to hold and feel them, bridging a sensory connection to these vital cellular elements. Each piece bears quotes, associations, and fragmented text, woven together like a mosaic to convey the myriad roles mitochondria play in both health and disease. Charlotte dissected printed text and reconstructed it in strands, forming connections and organic shapes.
Their work is displayed on a pedestal, with each piece arranged to create a flowing path symbolising the ceaseless flux of metabolic activity. This sensory experience invites viewers to hold the pieces in their hands, feeling both the vitality and fragility of mitochondria, rendering science into something tangible and profoundly intimate. This collaboration has left Gavin feeling energised to take this concept further. At Liverpool John Moores University, he is already working with student artists in science and art master’s programmes to embark on new creative scientific projects.
Bridging Research and Compassion: Lele Saa’s Interactive Book on Noonan Syndrome
Lele Saa, an illustrator with a flair for character design, joined forces with Dr Katie Coveney to create a warm and engaging activity book tailored for children and families impacted by Noonan syndrome. Noonan Syndrome affects approximately 1 in 2,500 people worldwide yet resources that provide accessible and empathetic, non-clinical information can be hard to find. Inspired by Dr Coveney’s research on the lived experiences of those with Noonan syndrome, Lele brought to life a visually captivating, activity-rich book.
This interactive book includes word searches about the condition’s symptoms, an “I spy” game, a maze, and even a “chatterbox” featuring positive affirmations for caregivers. Lele’s illustrations invite children to learn and engage with the realities of Noonan syndrome in a playful, comforting way.
“I included care tips to caregivers like, ‘Do a silly dance’. It’s a gentle reminder for caregivers to prioritise self-care, shared in a way that a child could pass along to their parents. Katie and I worked closely to ensure these mindful activities were sensitive to the daily lives of caregivers.”
Lele also designed a board game for families and the public to play together, highlighting the ups and downs of living with a rare disease. Initially, a “hospital appointment” card instructed players to lose 2 turns, but through thoughtful dialogue with Dr Coveney, the pair rethought this, reframing it as “you miss school for a hospital appointment, lose 2 turns” This subtle shift represents a powerful reframe, blending realism with optimism.
Reflecting on the project, Lele shared, “I learned so much, especially about the similarities people experience across different rare conditions. The most important takeaway is that, with the right support, people with rare diseases can truly thrive.” Her Noonan syndrome book will be displayed at Rarefest24 alongside her board game, providing visitors with a memorable, hands-on experience in learning about rare diseases. Lele’s upcoming children’s picture book and commissions showcase her commitment to intricate, impactful storytelling.
Celebrating Connections: The Artistic Process in Bridging Science and the Public
At the core of the Art Translations Project is dialogue—between scientists and artists, and between the artworks and the public. For instance, Gavin and Charlotte’s mitochondrial ceramics were showcased at the Lily Foundation Adult Support Weekend, where individuals affected by mitochondrial disorders had the opportunity to physically engage with the pieces. The response was both heartwarming and profound, as people expressed feeling an intimate connection to their health journeys and the strength required to manage their conditions. Likewise, Lele’s Noonan syndrome activity book is already making a difference, filling a knowledge gap and fostering a sense of community, fun, and understanding among families.
Rarefest24: An Unmissable Exhibition of Art and Science
This November, the full collection of 20 art-science collaborations from the Art Translations Project will be displayed at Rarefest24. Visitors will have the chance to witness this breathtaking array of artwork firsthand, each piece a testament to the transformative power of art in illuminating the complexities of rare diseases. Gavin and Charlotte’s mitochondrial ceramics will invite attendees to experience the sensory world of these cellular powerhouses, while Lele and Dr Coveney’s interactive Noonan syndrome book and board game will provide families with an innovative, playful way to learn about and connect with rare disease experiences.
Rarefest24 promises an unforgettable journey into the creative world of rare disease science, celebrating the resilience of the rare disease community and the imaginative power of art. Don’t miss your chance to experience this extraordinary fusion of art and science at Rarefest24, where the boundaries between imagination and discovery dissolve, leaving behind a legacy of inspiration.