Emily Owen: World NF2 Day

Emily Owen is an award winning author and speaker. She speaks on all sorts of topics, including faith, disability, communication, ethics. Diagnosed with NF2 - SWN as a teenager, Emily experienced the full force of the genetic condition. NF2 has caused Emily to lose her hearing, left her with facial weakness and with difficulty walking.

Supporting the NF and Rare Diseases Community, by being open about the realities of NF2, Emily uses her own experiences to encourage others and raised awareness for a widely unknown condition.  Emily was a trustee of Nerve Tumours UK for 12 years from 2012 to 2024 and we are proud to welcome Emily as our new charity ambassador.

Today is NF2 Day

I don’t believe it’s people’s fault that they don’t know about NF2

Will you be a bridge?

Will you help me do a bridge?

I recently saw a video of a football stadium

Today is NF2 Day

We are each the 1 in 35,000. And each one of us should be celebrated today. I’m sending everyone virtual chocolate! What is one thing you would like people to know about NF2? 

I don’t believe it’s people’s fault that they don’t know about NF2

I’d never heard of it until I was diagnosed. It is a rare condition. And if we, who live with NF2 - whether personally or through family/friends/patients - don’t advocate for it, who will?

As a charity ambassador, I am not suggesting I can reach 72000 people single handedly. But perhaps I can begin the conversation. Perhaps you can, too. And NF2 will become more widely known and supported.

Will you be a bridge

This is essentially what NTUK were asking me when they invited me to be an ambassador. ‘Acting as a bridge between the organisation and the community’ I had no hesitation in agreeing, and I look forward to advocating for NF2 in any way I can. NF2 throws us, in many ways, into a different place. We are no longer simply one of the crowd.

We become 1 in 35,00.

Will you help me do a bridge

My gymnast niece was asking for help to balance, bending over backwards, on her hands and feet. I helped her as best I could, and after a few attempts, she performed a ‘bridge’ by herself. Bending over backwards, balancing on hands and feet, is not a usual way for people to stand. I am not a gymnast, but I can relate to standing in an unusual way. My Nf2 has seen to that, leaving me with a limp and wonky stance.

I recently saw a video of a football stadium

The stadium was packed, 72000 people in it. The caption read ‘imagine having a medical disorder so rare that only 2 people in this crowd are affected by it’. Now imagine that those 2 people told the people beside them about NF2. And the people beside them told others. And so on. Imagine those 72000 people knowing about NF2.