Researching NF1
10 October 2019
Researching NF1
Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.
I got into the research as part of my undergraduate degree in medicine. I did a dissertation with Professor Walker's team looking into the use of chemotherapy/radiotherapy/observation as a line of treatment in paediatric patients with NF1 that had optic pathway gliomas.
Professor Walker is one of the UK’s leading experts in children’s brain tumours, and is co-director of the Children’s Brain Tumour Research Centre at the University of Nottingham.
In my research, MRI images and visual acuity as well as demographics of the patient were sent out to a panel of experts to obtain a consensus decision on best line of treatment.
The research has acted as a foundation that has been built on to assist with treatment decisions within the SIOPE community.

I recently have been back to visit the Nottingham team at Queen's Medical Centre and they are continuing their research into the treatment of children with NF1 and NF2.
Optic pathway glioma (OPG) are tumours that arise from the glial cells in the central nervous system. They form anywhere on the optic pathway but are commonest in the optic nerves in NF1. Most tumours are indolent and do not need treatment but some cause decreased vision in childhood and require chemotherapy.
Filter News
_1_800_600_s_c1.jpg)
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More_1_800_600_s_c1.jpg)
NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
Read More_3_800_600_s_c1.jpg)
Running for a Cure: Laura and Gonzalo Take on Half Marathons for NF1
Laura and Gonzalo; founders of CureAge Therapeutics, lace up for NF awareness.
Read More
Diet, fatigue and NF1
Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
Read More
Our Ambassadors
NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
Read More
London Marathon 2025 Team NTUK
Congratulations and a big THANK YOU to Team NTUK for their superb efforts
Read MoreIan’s Story
Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
Read More
London Marathon 2025
Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
Read More
Nerve Tumours UK Virtual Coffee Mornings
Chat and connect in our newly announced NTUK Virtual Coffee Mornings
Read More