by Thanos P.
Last week I was invited to take part in the annual conference of Aniridia Network UK. There, I was given the opportunity to present the work we undertake in Liverpool University, alongside Dr. Kevin Hamill and Prof. Colin Willoughby, developing a therapeutic tool for Aniridia Associated Keratopathy. It was revitalising (and somewhat intimidating) to be able to communicate my research to the people who my work focuses upon, those affected by Aniridia rather than my usual audience of research scientists and clinicians. I certainly got a lot out of it, and I hope the audience appreciated it too!
From my day at the meeting, it is evident that a tight community is being formed around people that are or will face similar difficulties and challenges due to their eye condition. A lot of work is being done from the organisers to keep people informed and up to date with all the different aspects of Aniridia. And, maybe more importantly, form a network that provides emotional support and the chance to make new friends. If you are reading this as a patient I encourage you to check out the network (Aniridia.org.uk).
Coming back from a conference that is organised not by big pharmaceuticals or accademics but by the patients, and for the patients, helps put some things that I am doing into real-world perspective. Although the final aim of our work is to develop a therapeutic tool for AAK, speaking with patients also provides us with knowledge and ideas of how we can ease the burden of the people affected by Aniridia. Its easy to see our work as cells in a dish or even pieces of RNA but the implications on quality of life and what matters to the patient is key to our research going in the right direction. We can’t underestimate the ideas that we gain from these meetings, ideas that will soon start to put in motion.
A big thanks go to the organisers for a flawless conference throughout the day and to the people that showed an interest in our research and were really friendly throughout. This was my first time speaking at one of these meetings and I couldn’t have been made more welcome. It really was inspirational and informative to get a chance to interact with everyone.
I think my closing remark on my presentation is probably sums up the most important thing I took with from the conference.
“We, scientists, tend to lose ourselves in the labs, or with our faces stuck against our computer screens. It is nice to be reminded WHY we do WHAT we do, and for WHOM.”
Thanos is a Fight For Sight funded PhD student based in the Dept of Eye and Vision Science at the University of Liverpool.
His work is investigating the ocular development disorder, aniridia, and the aim of his project is to try and to develop a molecular therapy to combat this blinding and painful disorder.