I was born to work for the Nystagmus Network. It just took me a while to realise it. I had a gift for modern foreign languages at school, so I thought I’d be heading to Strasbourg to be an interpreter. And I did! For a while!
But then I got the teaching bug – teaching adults! I loved it.
Meanwhile my daughter was diagnosed at 6 weeks with nystagmus. What the heck is that?
Luckily for me, another Mum had already founded the Nystagmus Network, so I didn’t have to. The charity changed my life from that very first phone call.
I was no longer alone trying to find the way through for my girl.
I volunteered as a parent advisor at first and even served as a trustee for a while, making my way on to the staff team in 2015.
It’s been very busy!
In the past decade I’ve seen a total rebranding, a new website, digitisation of all our comms, 15,000 Facebook followers.
I’ve trained umpteen school and clinical staff, delivered workshops to hundreds of parents and written countless blog posts. And I’ve celebrated 10 Nystagmus Awareness Days!
In research we continue to inch towards a greater understanding of this hugely complex and misunderstood condition working alongside the UK’s leading experts.
But every time the phone rings and it’s a parent, I’m right back there, remembering what it was like to feel scared and alone. And that’s why I’m still here!