🦶 One step and one pound closer to a cure. 🦶

Even if you can literally only donate £1, that is £1 closer to a cure. I don't mind if your donation is small, big, anonymous, or has a name on it — I just care that I'm raising money and 'doing something'.

On 23rd July 2026, my daughter, my world, Evelyn — was diagnosed with a rare disease called NF2. Like you, I thought, what is NF2? Well, fewer than 1,000 people in the UK have NF2 (which is why you don't know about it) — that's around 1 in 35,000 in the world. Suffering from something so rare means there is a lack of funding and research into this condition. This is where I come in: an average runner trying to raise money for Cure NF2, a patient-led charity that funds researchers at the University of Manchester to hopefully, one day, find a cure. Like any parent would, I've found this to be very difficult news to process. Evelyn is just 12. She is a much-loved daughter, granddaughter, big sister, niece, cousin and friend.

What is NF2? NF2 is a gene located on chromosome 22. Essentially, Evelyn has an error in her gene. This gene is responsible for making a protein called merlin, which acts as a brake system in healthy people. Merlin stops healthy people from developing tumours. Unfortunately, Evelyn's faulty gene doesn't make any merlin at all, which is why she has two brain tumours — one being very large — and spinal tumours. In NF2, people grow tumours on any nerves in their bodies. This can affect their ability to see, swallow, speak, move, hear — the list is endless. NF2 is ruthless; these tumours grow in tricky places, and Evelyn's large tumour is significantly compressing her brain stem and has left her deaf in her right ear. It's been said many times to me, but it was said once again today (29th October 2026): this surgery is "life-saving". Evelyn doesn't have a choice — she needs this surgery.

Other treatment options for NF2 are very limited. NF2 patients rely on a chemotherapy-based drug called Avastin, radiation treatments and, of course, surgery. All of these "buy patients time" while they search for a cure, but they aren't ideal treatments. We've been told Avastin will wreck her kidneys, and radiation isn't ideal for children (or adults) who develop tumours either, but this is all NF2 patients have to rely on at the moment.

At Evelyn's initial diagnosis, we were told her surgery would be done in 6-8 weeks due to the severity and size of the tumour. We've had to wait what feels like an eternity, I'm told, to ensure Evelyn has the very best team of surgeons in the operating theatre. We are very lucky that she does. In mid-November, Evelyn's life will be saved during a 12-hour surgery. If anyone has any tips to get me through this day, please let me know. We hope they can remove all of the tumour, but we've also been informed this might not be possible in Evelyn's case due to the size and location of it. This, and all of the other risks involved, is difficult to think about. One of the nurses said to me last week, "Emma, this is a marathon, not a sprint." Well, I've quite literally made it into a half marathon! Sorry, Nicola! My mum thinks I'm crazy too! Crazy, for sure, about my girl, Evelyn ❤️‍🩹.

Please join me on my mission to help find a cure for NF2. If you can't donate this time, I totally understand — times are hard. Maybe next time, as I won't give up, for Evelyn.

#forEvelyn