Motor neurone disease (MND) is a terminal and incurable condition. But for the people and families who live with it, that stark reality is not what defines them. It does not capture the love, strength or determination they carry with them every day. Nor does it help to build a sense of community.

What does build community is hope. That hope can include participating in research that may one day lead to earlier diagnoses and better treatments. For families with a history of this condition, getting involved in research is not just about contributing data, it‘s about helping to shape a different future for themselves and for the next generation.

To support this challenge, we are collaborating with the Oxford Motor Neurone Disease Centre to develop a website and community-building platform called ACORN. The project aims to grow an inclusive and diverse national community of people with genetic markers associated with MND, enabling them to work alongside researchers to better understand the relationship between genetics and disease progression. Ultimately, the goal is to improve diagnosis and develop potential treatments before symptoms appear.

If you are working with complex health conditions and would like to explore how communication design can help build bridges between your research and the needs of diverse communities, we would love to hear from you.