Emily Owen 

Emily Owen is an award winning author and speaker. She speaks on all sorts of topics, including disability, communication, ethics and faith.

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 raise awareness for a widely unknown condition. 

Emily was previously a trustee of Nerve Tumours UK for 12 years from 2012 to 2024.

May 2026

No Bell Prize by Emily Owen

May 22nd is NF2-related Schwannomatosis Day.I sat in an oncology waiting room.
A few weeks before, I’d been told that I had a growing brain tumour.
Not cancer, but NF2.
And, as the saying goes: ‘benign is not fine’.
My tumour would be treated with a drug called Avastin.
Treatment had not yet begun; this was my first appointment to discuss it.
On the wall in front of me was a bell.

 

The bell people ring if they are given the all clear.
I looked at it.
I will never ring that bell.
Avastin aims to halt tumour growth, not take the tumours away.
No Bell Prize for us.

“How long will your treatment last?” is a natural question.
My only answer? “I don’t know.”
Nf2 is a life sentence.
No Bell Prize.
And yet, the life sentence itself carries hope.

As an author, I love the beauty of a well-structured sentence.
As a patient, I value – immensely – those who structure the treatment part of my life
sentence.

The receptionist who greets me with a smile when I arrive for treatment, and keeps
me on track. He patiently reminds me where to go, and what to do.

The other people in the waiting room, where we chat or don’t chat, but where we
share a kind of bond.
The nurse who administers treatment. Despite the fact that she must be busy, she
has time for a chat. Who knew you could have a laugh while attached to a
chemotherapy machine?!
The care assistant who brings me a cup of tea. She’s the one who noted I am deaf,
right at the start, and was delighted to welcome me with a little bit of sign language.
The doctors I see in clinic. Their care, and expertise, and compassion, and time, is
reassuring and steadying.

May 22nd is NF2-related Schwannomatosis Day.
No Bell Prize.
But, as I look around the NF2 community – patients, family, friends, professionals – I
begin to think that a Nobel Prize is in order.
Not for an individual, but for the whole.
We are a community.
A community who live with NF2 every day.
Who share its challenges and its joys.
Who look for the day when we, too, can ring that bell.
Treatments are advancing all the time.
We hope, and we are here.
Hoping for a cure,
Here in the no-cure-yet.

May 22nd is NF2-related Schwannomatosis Day.
And the Nobel Prize goes to all of us.