Science Communication – and what I learned from the Kabuki Family Day 2022

As scientists, we have a special language

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As young, passionate, and devoted scientists, most of the time, we do not realize how much scientific knowledge we gain throughout our education paths. It is especially true for the Ph.D. period when our projects eventually become kind of our “babies” that we think of all the time.  Furthermore, as a consequence of spending most of our time in the laboratories to take the projects one step further, we generally interact with people just like “us”. What do I mean by us? I am talking about people who do not get surprised or glued to the spot when we say, “I had so many mice today to isolate organs from.” or “Can you lend me a small aliquot of heat-killed Salmonella typhimurium?” or “DNA library preparation for the sequencing was successful.” Quite often we are not aware of how often we use this scientific language in our daily lives. It is, of course, not a problem when you are in the scientific community. However, there is a life outside of science, and we need to connect these two worlds. At this point, being good at science communication is a great tool.

What is science communication, and why is it important?

Science communication is a process of transmitting complex science-related topics to nonexperts using strategic communication skills and storytelling elements. According to a report published in 2017 by the National Academies of Sciences, Engineering, and Medicine, there are five main goals of science communication.1 They can be listed as follows;

  • To share findings and excitement about science.
  • To increase appreciation for science as a useful way of understanding and navigating the modern world.
  • To increase knowledge and understanding of science.
  • To influence people’s opinions.
  • To engage with diverse groups which have different perspectives about science in pursuing solutions to societal problems.1,2

Overall, science communication aims to fill the gap between the scientific community and the general public. Even though I have heard it so many times as a term before, I have recently experienced the importance of it firsthand. Let me share this unique occasion with you.

My first experience with science communication

Copy right: Stichting Kabuki Syndroom

First, a quick background to grasp how things lead to this occasion. An essential part of my Ph.D. project consists of analyzing blood samples from young patients with several rare congenital disorders. One of them is called Kabuki syndrome. It has two types and they are caused by mutations occurring in a particular histone methyltransferase or a demethylase. The syndrome is classified as a multisystem disorder as it has vital effects on different systems, such as the nervous system, immune system, and skeletal system, among others.3 Briefly,myduty is to characterize these patient’s immune cells and to understand the immune response profile compared to a healthy cohort. As our collaborator who provides these samples locates in the Netherlands, all patients I have collected data from also live in the Netherlands. I had never thought that one day I would have the possibility to meet these children, spend a day with them and experience what their lives are like with the syndrome. Because their existence in my life was only blood samples that turned into cell populations, staining and stimulation protocols, acquired data, and eventually dots on graphs. I hope it does not sound so cruel, but I am sure you know what I am trying to say if you have ever run a clinical trial. One day members of the Kabuki syndrome organization contacted me via our collaborator. They invited me to Kabuki Family Day 2022 in the Netherlands to present my project findings to families who have kids with Kabuki syndrome. I first hesitated about transferring the information because I needed to figure out how to tell the parents what I do with their kids´ samples. Then, I realized it was a big opportunity to get in touch with the Kabuki syndrome community and, of course, to improve myself in science communication. I was going to learn to simplify my 2 years-long immunology-based project in such a way that it would be understandable for parents. It was more difficult than I thought to shape it simply but still show its importance by using non-scientific language.

Science communication – a positive effect for both sides

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On that day, over 100 people, including Kabuki syndrome patients (mostly kids), their parents, siblings, clinicians working in the field, members of the rare disease associations, and health care providers gathered in Valkenburg, the Netherlands. Some patients themselves talked about “life as a Kabuki patient”, and clinicians shared some of their recent research on the topic. After the presentations, some parents approached me and told me they would like to participate in the study. It was precious news for my project because one does not find an individual with the rare congenital syndrome who would like to participate in the study every day. One father especially explained to me why it is important for him to see us as scientists in such meetings. His big hope as a parent is that there is an effort in the scientific community to understand the syndrome better, to find a cure, or at least to improve their kids’ living standards. At that moment, I realized how valuable this interaction was for both of us. I experienced a wonderful and unique day with the Kabuki community. I got different perspectives from patients, parents, and clinicians on the syndrome. The project definitely became more meaningful for me. Overall, the event was fruitful and empowering for both sides.

To conclude, I want to highlight the significance of science communication in this article. The above-mentioned event was just a glimpse of how significant outcomes can be created if the scientific community and the public understand each other better.

Here is the link to a short movie from the Kabuki Day 2022.

Author: Burcu Al



1 National Academies of Sciences Engineering, and Medicine. (2017). Communicating Science Effectively: A Research Agenda (978-0-309-45102-4).

2 Kappel K and Holmen SJ (2019) Why Science Communication, and Does It Work? A Taxonomy of Science Communication Aims and a Survey of the Empirical Evidence. Front. Commun. 4:55. doi: 10.3389/fcomm.2019.00055

3 Lindsley, A.W. et al. (2016) “Defects of B-cell terminal differentiation in patients with type-1 kabuki syndrome,” Journal of Allergy and Clinical Immunology, 137(1). Available at: