29 April 2019
Joanna Elson is a lecturer in Mitochondrial Genetics at Newcastle University. She recently ran the London Marathon in aid of Nerve Tumours UK, and here she explains her thoughts on this and raising awareness about NF.
My father died suddenly last November, from a head injury. For years I had been talking with him about running the London Marathon on behalf of The Neuro Foundation – now, of course, called Nerve Tumours UK. My mother had NF1 – it was a contributing factor to her death of breast cancer at the age of 42.”
I thought: if not now, when? I did some research that suggested training for such an event can be done in twelve weeks – so twelve weeks before the marathon this year, I decided to sign up and start running, couch to marathon in 12 weeks.. I wasn’t expecting to challenge Paula Radcliffe’s record! In fact, I ran in a time of [6:31], which I'm more than happy with.
"I not only wanted to raise funds, but also awareness about Neurofibromatosis. There are 26,000 people who have NF in the UK, yet it is far less well known than conditions such as Cystic Fibrosis and Duchenne Muscular Dystrophy, even though far fewer people have those conditions. "
NF1 is complex as people are so different in terms of symptoms, even within a single family. An example is myself and my brother, Colin. We both have the same NF1 gene mutation, yet I do not have pronounced symptoms, while Colin has epilepsy and a complex set of learning disabilities.
I also had the opportunity to raise awareness as I work at the Institute for Genetic Medicine (IGM). The Genetics Matters event is one of IGM’s outreach events, and I decided to focus on nerve tumours at the event this year. I set up a stall with NF nurse Rebecca Rennison, and we had lots of good conversations with people at the event.”