Threads of Discovery – Seeking lived experience with neurodegeneration

We will be hosting an in-person introductory meeting on Wednesday 22nd April for lived experience partners and researchers. Find out more below.

In my lab, we study tiny fruit flies to learn more about rare brain diseases. We change their genes so we can see how their nerve cells work and what goes wrong in diseases like motor neuron disease. Even though fruit flies are small, their brains work in ways that are similar to ours. This makes them very helpful for understanding how brain cells get damaged over time. Our work is helping scientists learn how these diseases start and may one day lead to new ways to treat or prevent them.

We are also keen to explore how we might better communicate our research findings with families affected by rare disease and / or provide a resource for families receiving a diagnosis of these diseases.

This communication is part of a project funded by UCD STEM Challenge Fund called  “Threads of Discovery: Weaving Patients into Biomedical Research” driven by the Patient Voice in Health Research network in UCD Conway Institute. As part of this initiative, we are looking for partners with a lived experience of different disease areas to collaborate with researchers within UCD Conway Institute. 

We will be hosting an introductory meeting on 22nd April for lived experience partners and researchers. This will be in person, and will be a day to get to know each other, to learn a bit about public and patient involvement (PPI), to set expectations, and to have a chat. 

We hope through this initiative that long-term partnerships will be established. However, if at the end of the day you think this isn’t for you, that is absolutely fine. You won’t be locked into something you don’t want to be involved in! This is all exploratory.